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Queensland University of Technology

SELF-MANAGEMENT PROGRAM FOR PEOPLE WITH CHRONIC KIDNEY

DISEASE IN VIETNAM: A PRAGMATIC RANDOMISED CONTROLLED TRIAL

Nguyet Thi Nguyen

RN, BN, MSN

Submitted in fulfilment of the requirements for the degree of

Doctor of Philosophy

Institute of Health and Biomedical Innovation

School of Nursing

Faculty of Health

Queensland University of Technology

2018
Abstract

Background: Globally, chronic kidney disease (CKD) is a major problem, and in

Vietnam it is increasing rapidly. Active involvement in self-management can prevent

further deterioration of kidney function and slow the progression of CKD. Self-

management education programs that focus on improving CKD knowledge and self-

efficacy have been shown to improve self-management behaviours and health-related

quality of life, although most of these studies have been conducted in end-stage kidney

disease. Few studies have been done in earlier, pre-dialysis stages of CKD. In Vietnam,

very little education is provided by healthcare providers to patients with a chronic

disease, and no previous studies of CKD self-management have been undertaken in this

country. This thesis reports on a three-phase study.

Aims: The aims of Phases 1 and 2 were to translate, validate, and psychometrically

evaluate two instruments (kidney disease knowledge survey [KiKS] and CKD self-

management [CKD-SM]) in Vietnamese prior to the main phase. Phase 3 sought to test

the effectiveness of a self-management intervention designed for pre-dialysis CKD

patients attending renal clinics in Vietnam.

Methods: Phase 1 involved forward and back-translation of the two instruments with

four independent translators and then the Vietnamese versions were tested for content

validity by an expert panel (n = 10). Phase 2 used a test/retest design to psychometrically

evaluate the Vietnamese versions of both instruments for measuring self-management and

knowledge of people with CKD. The retest was one to two weeks later. Analysis of the

first two phases involved assessment of content validity, reliability, and internal

consistency.

Self-management program for people with chronic kidney disease i


In Phase 3, a pragmatic randomised controlled trial (pRCT) was conducted in the

outpatient renal clinics at Bach Mai Hospital, Vietnam. Participants were diagnosed with

CKD (stages 3–5) and not yet receiving dialysis, ≥ 18 years old, able to communicate in

Vietnamese, and able to be contacted by phone. Exclusion criteria consisted of

participants who were unwilling to participate, had cognitive impairment, were seriously

unwell, were enrolled in another clinical trial, or were undertaking dialysis. Participants

were randomly allocated into either the intervention or control group. Social cognitive

theory informed the intervention, which was delivered over 16 weeks. The intervention

group received face-to-face education and telephone support provided by a nurse

researcher, in addition to usual care. The comparison group received usual care only.

Primary outcomes were knowledge and self-management behaviour measured by the

instruments translated and tested in the previous phases. Secondary outcomes were self-

efficacy, health-related quality of life, and blood pressure control. Vietnamese versions of

the self-efficacy for managing chronic disease (SECD) and health-related quality of life

(SF-36v2) instruments were used to measure self-efficacy and health-related quality of

life, respectively. Blood pressure data were extracted from hospital records. All outcome

data were collected for both groups by blinded outcome assessors at baseline, 8 weeks

and 16 weeks. An intention-to-treat analysis and linear mixed models were used to

evaluate the effectiveness of the intervention at each time point and treatment interactions

with time and group.

Results: Phase 1 found that the Vietnamese versions of both the knowledge and self-

management instruments (V.KiKS and V.CKD-SM, respectively) demonstrated good

content validity. Scale and item content validity average scores for the V.KiKS and

V.CKD-SM were .97 and .99, respectively. In Phase 2, 158 people (51.3% women) aged

between 18–84 years completed both instruments. Most had CKD stage 5 (68.3%). The

ii Self-management program for people with chronic kidney disease


reliability testing of the V.KiKS Kuder-Richardson-20 was .58 and the V.CKD-SM

Cronbach’s alpha was .93. Retesting found good intra-class correlation coefficients of .82

for the V.KiKS and .84 for the V.CKD-SM. The results from Phases 1 and 2 supported

the validity and reliability of these instruments.

A total of 135 participants were enrolled into the pRCT, with 68 receiving the

intervention and 67 receiving usual care. There were no significant differences in

demographic and renal data between the groups at baseline. The average age of

participants in the intervention group was 48.8 years (standard deviation [SD] = 13.7),

which was similar to the control group (48.9 years, SD = 13.9). Most participants (67%)

were in either CKD stage 3B or 4. Glomerulonephritis was the main cause of CKD in

both groups (60%). There were no significant differences in knowledge, self-management

behaviour, and self-efficacy between the intervention and control groups at baseline.

Linear mixed models showed treatment effects of time and group on participants’

knowledge, self-management behaviour, and self-efficacy were significant, with p values

< .01. At 8 weeks’ follow-up, compared to usual care, the intervention group showed

improvement in knowledge (mean change = 5.71, 95% confidence interval [CI] = 4.80,

6.62), self-management behaviour (mean change = 12.44, 95% CI = 7.48, 17.40), and

self-efficacy (mean change = 1.02, 95% CI = 0.49, 1.55). At 16 weeks, large effect sizes

for improved knowledge (mean change = 7.43, 95% CI = 6.50, 8.36), self-management

behaviour (mean change = 18.13, 95% CI = 13.14, 23.11), and self-efficacy (mean

change = 1.43, 95% CI = 0.90, 1.96) were detected. A small effect change was observed

for health-related quality of life in the intervention group [physical health component

summary (mean change = 6.91, 95% CI = 1.22, 12.60) and mental health component

summary (mean change = 7.83, 95% CI = 1.88, 13.78)]. There was no significant change

found between groups for blood pressure when the study concluded.

Self-management program for people with chronic kidney disease iii


Conclusion: The V.KiKS and V.CKD-SM are now validated patient-reported outcome

measures suitable for clinical practice and research in Vietnamese-speaking populations.

The findings of the main study, the first RCT in Vietnam to test a CKD self-management

program targeting pre-dialysis stages of CKD, found that the education program was

effective in improving patients’ knowledge, self-management, and self-efficacy.

However, further research of longer duration is needed to establish whether the program

preserves kidney function. Nurses in Vietnam could deliver this short patient education

program in hospital wards or outpatient clinics and also in the commune hospitals during

health promotion activities. Finally, this study contributes to nursing knowledge to

improve patient care in the earlier stages of CKD.

Keywords: blood pressure, chronic kidney disease, health-related quality of life,

knowledge, pragmatic randomised controlled trial, self-efficacy, self-management, social

cognitive theory

iv Self-management program for people with chronic kidney disease


Table of Contents

Abstract ........................................................................................................................ i

List of Figures ........................................................................................................... xii

List of Tables ........................................................................................................... xiii

List of Abbreviations ................................................................................................xv

Statement of Original Authorship ......................................................................... xvi

Acknowledgements ................................................................................................ xvii

Chapter 1: Introduction .......................................................................................1

1.1 Introduction .........................................................................................................1

1.2 Chronic Kidney Disease ......................................................................................2

1.2.1 Definition ...................................................................................................2

1.2.2 Prevalence ..................................................................................................3

1.2.3 Risk Factors and Causes ............................................................................5

1.2.4 Management and Treatment.......................................................................8

1.2.5 Healthcare in Vietnam .............................................................................10

1.3 Significance of the Research .............................................................................13

1.4 Research Aims ...................................................................................................13

1.5 Research Questions ...........................................................................................14

1.6 Thesis Overview ................................................................................................14

Chapter 2: Literature Review ............................................................................17

2.1 Introduction .......................................................................................................17

2.2 Impact of Chronic Kidney Disease....................................................................17

2.2.1 Physical Impact ........................................................................................17

2.2.2 Psychological Impact ...............................................................................19

2.2.3 Social Impact............................................................................................19

Self-management program for people with chronic kidney disease v


2.2.4 Health-Related Quality of Life ................................................................21

2.3 Self-Management and Self-Care in Chronic Disease ........................................22

2.3.1 Self-Care ..................................................................................................22

2.3.2 Self-Management .....................................................................................23

2.4 Chronic Kidney Disease Self-Management ......................................................29

2.4.1 Skills.........................................................................................................30

2.4.2 Components of Chronic Kidney Disease Self-Management ...................31

2.5 Chronic Kidney Disease Self-Management Research .......................................35

2.5.1 Critical Appraised of Chronic Kidney Disease Self-Management


Systematic Reviews .................................................................................35

2.5.2 Summary of Included Randomised Controlled Trials in Chronic Kidney


Disease Self-Management........................................................................45

2.5.3 Gaps in Chronic Kidney Disease Self-Management Research ................56

2.6 Chapter Summary ..............................................................................................57

Chapter 3: Theoretical Framework ..................................................................59

3.1 Introduction .......................................................................................................59

3.2 Social Cognitive Theory ....................................................................................61

3.2.1 Person, Behaviour, and Outcome .............................................................65

3.2.2 Self-Efficacy ............................................................................................66

3.2.3 Information Sources .................................................................................66

3.2.4 Outcome-Expectation...............................................................................70

3.2.5 Summary of Social Cognitive Theory .....................................................71

3.3 Social Cognitive Theory and Chronic Kidney Disease Self-Management .......71

3.4 Social Cognitive Theory Fit with Vietnam Context ..........................................73

3.5 Chapter Summary ..............................................................................................76

Chapter 4: Methods ............................................................................................77

4.1 Introduction .......................................................................................................77

4.1 Research Questions ...........................................................................................79

vi Self-management program for people with chronic kidney disease


4.2 Phase 1: Translation and Validation ..................................................................79

4.2.1 Instruments ...............................................................................................80

4.2.2 Process of Translation ..............................................................................81

4.2.3 Data Analysis ...........................................................................................83

4.3 Phase 2: Psychometric Evaluation.....................................................................84

4.3.1 Design ......................................................................................................84

4.3.2 Setting ......................................................................................................84

4.3.3 Sample ......................................................................................................84

4.3.4 Eligibility Criteria ....................................................................................85

4.3.5 Data Collection ........................................................................................85

4.3.6 Procedure .................................................................................................85

4.3.7 Data Analysis ...........................................................................................86

4.4 Phase 3: A Pragmatic Randomised Controlled Trial .........................................87

4.4.1 Design ......................................................................................................87

4.4.2 Participants ...............................................................................................88

4.4.3 Intervention ..............................................................................................89

4.4.4 Length of Follow-up ..............................................................................100

4.4.5 Outcomes ...............................................................................................100

4.4.6 Sample Size Estimation .........................................................................105

4.4.7 Randomisation .......................................................................................106

4.4.8 Sequence Generation..............................................................................106

4.4.9 Allocation Concealment .........................................................................106

4.4.10 Blinding ...............................................................................................107

4.4.11 Recruitment .........................................................................................107

4.4.12 Data Management and Analysis ..........................................................109

4.5 Research Ethics ...............................................................................................112

4.6 Chapter Summary ............................................................................................113

Self-management program for people with chronic kidney disease vii


Chapter 5: Results ............................................................................................115

5.1 Introduction .....................................................................................................115

5.2 Phase 1 Results ................................................................................................115

5.2.1 Translation .............................................................................................115

5.2.2 Translation Process ................................................................................116

5.2.3 Instrument Validation Results................................................................118

5.3 Phase 2 Results ................................................................................................120

5.3.1 Sample Characteristics ...........................................................................121

5.3.2 Renal Clinical Characteristics ................................................................124

5.3.3 Instrument Summary Results .................................................................127

5.3.4 Instrument Responses ............................................................................127

5.3.5 Instrument Reliability ............................................................................134

5.3.6 Test/Retest Reliability ............................................................................135

5.3.7 Pair Items Correlations...........................................................................136

5.3.8 Testing Normal Distribution of Outcome Variables ..............................140

5.3.9 Correlation between Test and Retest .....................................................140

5.3.10 Comparison of Outcome Variables Results by Demographic


Characteristics ........................................................................................141

5.3.11 Feasibility of Using Two Instruments .................................................145

5.4 Phase 3 Results ................................................................................................147

5.4.1 Participant Flow .....................................................................................147

5.4.2 Recruitment ............................................................................................151

5.4.3 Baseline Data .........................................................................................151

5.4.4 Test of Normality Continuous Variables ...............................................159

5.4.5 Baseline Associations between Socio-Demographic and Primary


Outcomes ...............................................................................................159

5.4.6 Effect of the Self-Management Program on Outcome Variables ..........163

5.4.7 Ancillary Analyses .................................................................................177

viii Self-management program for people with chronic kidney disease


5.4.8 Participant Evaluation of the Self-Management Program .....................181

5.4.9 Harms .....................................................................................................181

5.5 Chapter Summary ............................................................................................182

Chapter 6: Discussion .......................................................................................183

6.1 Introduction .....................................................................................................183

6.2 Theoretical Framework ...................................................................................183

6.2.1 Culture and Context ...............................................................................184

6.2.2 Mechanisms of Behaviour Change ........................................................187

6.3 Phase One: Translation and Validation of Instruments ...................................191

6.3.1 Vietnamese Kidney Disease Knowledge ...............................................192

6.3.2 Vietnamese Chronic Kidney Disease Self-Management .......................193

6.4 Phase Two: Psychometric Testing of Instruments ..........................................194

6.4.1 Vietnamese Kidney Disease Knowledge ...............................................194

6.4.2 Vietnamese Chronic Kidney Disease Self-Management .......................195

6.5 Phase Three: Effectiveness of a Chronic Kidney Disease Self-Management


Program .....................................................................................................................197

6.5.1 Knowledge .............................................................................................198

6.5.2 Self-Efficacy ..........................................................................................200

6.5.3 Self-Management Behaviour .................................................................201

6.5.4 Health Related Quality of Life ...............................................................203

6.5.5 Blood Pressure Control ..........................................................................205

6.6 Chapter Summary ............................................................................................207

Chapter 7: Conclusions ....................................................................................209

7.1 Introduction .....................................................................................................209

7.2 Strengths of the Study .....................................................................................209

7.3 Limitations of the Study ..................................................................................211

7.4 Implications of the Study.................................................................................213

Self-management program for people with chronic kidney disease ix


7.4.1 Implications in Clinical Practice ............................................................213

7.4.2 Implications in Nursing Education ........................................................214

7.4.3 Implications for Research ......................................................................215

7.4.4 Implications for Healthcare Organisations ............................................216

7.5 Thesis Conclusions ..........................................................................................218

References ................................................................................................................219

Appendices ...............................................................................................................254

Appendix 1. Author’s Permission for Using Original version of the KiKS .............254

Appendix 2. Author’s Permission for Using Original version of the CKD-SM .......255

Appendix 3. Original English Kidney Disease Knowledge Survey (E.KiKS) .........256

Appendix 4. English Version of the Chronic Kidney Disease Self-Management ....257

Appendix 5. Phase 1 and 2 − QUT Ethics Approval ................................................258

Appendix 6. Phase 1 and 2 − Bach Mai Hospital Approval .....................................259

Appendix 7. Phase 2 − Participant Demographic Information Questionnaire..........260

Appendix 8. Phase 2 − Kidney Disease Knowledge Survey ....................................262

Appendix 9. Phase 2 − Chronic Kidney Disease Self-Management Instrument ......266

Appendix 10. Phase 2 – Clinical Characteristics (from patients’ medical records) .270

Appendix 11. Permission to use the ‘Living with Reduced Kidney Function’ ........272

Appendix 12. Permission to use the ‘Living Well with Chronic Kidney Disease’ ..273

Appendix 13. Chronic Kidney Disease Booklet .......................................................274

Appendix 14. Agreement to use SF-36v2 .................................................................330

Appendix 15. Phase 3 − QUT Ethics Approval ........................................................331

Appendix 16. Phase 3 − Bach Mai Hospital Approval .............................................332

Appendix 17. Registration ANZCTR Number .........................................................333

Appendix 18. Phase 3 − Kidney Disease Knowledge Survey ..................................334

Appendix 19. Phase 3 − Chronic Kidney Disease Self-Management Instrument ....338

Appendix 20. Phase 3 − Self-Efficacy for Managing Chronic Disease Instrument .343

x Self-management program for people with chronic kidney disease


Appendix 21. Phase 3 − Health Related Quality of Life (SF-36v2) .........................345

Appendix 22. Phase 3 − Participant Demographic Information Questionnaire .......360

Appendix 23. Phase 3 – Renal Clinical Characteristics (Patients’ Medical Records)362

Appendix 24. Phase 3 − Patients’ Comorbidity ........................................................364

Appendix 25. Phase 3 − Scoring of Patients’ Comorbidities ...................................366

Appendix 26. Phase 3 − Evaluation of the Intervention Program ............................367

Appendix 27. Problematic words and phrases from Forward Translation of KiKS .369

Appendix 28. Problematic words and phrases from Forward Translation of CKD-SM373

Appendix 29. Comparison of English and Back-Translated of Vietnamese KiKS ..381

Appendix 30. Comparison of English and Back-Translated of Vietnamese CKD-SM387

Appendix 31. Assessment Tool for Panel .................................................................392

Appendix 32. Revision made for items that the Suggested by Panellists .................407

Appendix 33. Histograms, Normal Q-Q plots, and Box plots of Variables .............411

Appendix 34. Normality testing of Outcome Variables at each time point ..............421

Appendix 35. Participant Evaluation of Self-Management Program .......................422

Self-management program for people with chronic kidney disease xi


List of Figures

Figure 2.1. PRISMA flow diagram of included systematic reviews. .........................37


Figure 3.1. Triadic reciprocal causation (Bandura, 1989, 1997, 2004b, 2012). .........62
Figure 3.2. Social cognitive theory (Bandura, 1977, 2002; Lenz & Shortridge-
Baggett, 2002; Shortridge-Baggett & van der Bijl, 1996). ...........................64
Figure 4.1. Study phases. ............................................................................................78
Figure 4.2. Translation process adapted from Sousa and Rojjanasrirat (2011)..........83
Figure 4.3. Framework of the self-management intervention program. .....................90
Figure 5.1. Phase 2 research process. .......................................................................120
Figure 5.2. Consolidated standards of reporting trials 2010 participant flow
diagram. ......................................................................................................150
Figure 5.3. Mean [95% CI] of knowledge scores over time for the control and
intervention groups. ....................................................................................165
Figure 5.4. Mean [95% CI] self-management scores over time for the control and
intervention groups. ....................................................................................168
Figure 5.5. Mean [95% CI] self-efficacy scores over time for the control and
intervention groups. ....................................................................................172
Figure 5.6. Mean [95% CI] PCS scores at baseline and week 16 for the control and
intervention groups. ....................................................................................173
Figure 5.7. Mean [95% CI] MCS scores at baseline and week 16 for the control and
intervention groups. ....................................................................................174
Figure 5.8. Mean [95% CI] SBP at baseline and week 16 for the control and
intervention groups. ....................................................................................175
Figure 5.9. Mean [95% CI] DBP at baseline and week 16 for the control and
intervention groups. ....................................................................................175

xii Self-management program for people with chronic kidney disease


List of Tables

Table 1.1. Chronic Kidney Disease Classification .......................................................3


Table 1.2. Risk Factors for Chronic Kidney Disease ...................................................5
Table 2.1. Systematic Reviews of Chronic Kidney Disease Self-Management
Research .......................................................................................................41
Table 4.1. Face-to-Face Self-Management Education Program................................95
Table 4.2. Follow-up Self-Management Education Program .....................................98
Table 5.1. Demographic Characteristics of Expert Panel ........................................118
Table 5.2. Scale and Item Content Validity Average of Instrument Variables for
Content Validity and Readability................................................................119
Table 5.3. Demographic Characteristics of Participants .........................................122
Table 5.4. Renal Clinical Characteristics.................................................................125
Table 5.5. Means and Standard Deviations for two Instruments .............................127
Table 5.6. Vietnamese Kidney Disease Knowledge Correct Results ........................129
Table 5.7. Vietnamese Chronic Kidney Disease Self-Management Responses
Results .........................................................................................................131
Table 5.8. Summary of Internal Reliability for Instrument Variables and Subscale
Variables .....................................................................................................135
Table 5.9. Intra-class Correlation Coefficients for Instrument Variables................136
Table 5.10. Paired Samples Correlations for Vietnamese Kidney Disease
Knowledge ..................................................................................................137
Table 5.11. Paired Samples Correlations for Vietnamese Chronic Kidney Disease
Self-Management ........................................................................................138
Table 5.12. Testing Normal Distribution of Instrument Variables ...........................140
Table 5.13. Results of Mann-Whitney U Test for Vietnamese Kidney Knowledge
Variable by Demographic Characteristics .................................................142
Table 5.14. Results of t–tests for Vietnamese Chronic Kidney Disease Self-
Management Variables by Demographic Characteristics .........................144
Table 5.15. Information Required to Document the Flow of Participants through
each Stage of the Main Study......................................................................148
Table 5.16. Baseline Sociodemographic Characteristics .........................................152
Table 5.17. Baseline Related Renal Characteristics ................................................154

Self-management program for people with chronic kidney disease xiii


Table 5.18. Baseline Renal Clinical Test Results .....................................................155
Table 5.19. Baseline Characteristics of Participants Lost to Follow-Up ................157
Table 5.20. Baseline Internal Reliability for Instrument Variables and Subscale
Variables .....................................................................................................158
Table 5.21. Baseline Association of Socio-demographic Characteristics on Primary
Outcomes Variables ....................................................................................161
Table 5.22. Mean Scores of Knowledge Subgroups between two Groups at Each
Time Point ...................................................................................................166
Table 5.23. Comparison of Primary Outcomes Variables at Each Time Point
Showing Post-hoc Test for Control and Intervention Groups ....................169
Table 5.24. Mean Scores of Self-management Subscales between two Groups at
Each Time Point .........................................................................................170
Table 5.25. Comparison of Secondary Outcome Variables at Each Time Point
Showing Post-hoc Test for Control and Intervention Groups ....................176
Table 5.26. Comparison of Knowledge Mean Scores between Unadjusted and
Adjusted Baseline Socio-demographic Variables in the Intervention Group178
Table 5.27. Comparison of Self-management Mean Scores between Unadjusted and
Adjusted Baseline Socio-demographic Variables in the Intervention Group180

xiv Self-management program for people with chronic kidney disease


List of Abbreviations

BMI Body mass index


BP Blood pressure
CCM Chronic care model
CI Confidence interval
CKD Chronic kidney disease
CKD-SM Chronic kidney disease self-management
d Cohen’s d
DBP Diastolic blood pressure
eGFR Estimated glomerular filtration rate
ESKD End stage kidney disease
HD Haemodialysis
HRQoL Health related quality of life
IQR Interquartile range
KiKS Kidney disease knowledge survey
KRT Kidney replacement therapy
LMM Linear mixed models
M Mean
MCS Mental health component summary
Mdn Median
PCS Physical health component summary
PD Peritoneal dialysis
pRCT Pragmatic randomised controlled trial
ps p values
RCTs Randomised controlled trials
SBP Systolic blood pressure
SCT Social cognitive theory
S-CVI Scale content validity index
SD Standard deviation
SECDS Self-efficacy for managing chronic disease scale
V.CKD-SM Vietnamese Chronic kidney disease self-management
V.KiKS Vietnamese Kidney disease knowledge
V.SECD Vietnamese Self-efficacy for managing chronic disease
V.SF-36v2 Vietnamese Health-related quality of life

Self-management program for people with chronic kidney disease xv


Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet requirements
for an award at this or any other higher education institution. To the best of my
knowledge and belief, the thesis contains no material previously published or written by
another person except where due reference is made.

QUT Verified Signature


Signature:

Date: 15/06/2018

xvi Self-management program for people with chronic kidney disease


Acknowledgements

First, I would like to express my gratitude to my respectful supervisory team, Prof Ann

Bonner and Assoc Prof Clint Douglas, for their high-quality supervision. Special thanks

to Prof Bonner for her unwavering support, guidance, and encouragement from the

inception of this thesis to its completion. Her significant contribution to chronic kidney

disease nursing, nationally and internationally, has also inspired me in a number of

different ways. I also thank Ann for her enormous patience and support in reading and

editing this thesis. Without her support, I could not have completed this thesis.

Second, I would like to give my greatest thanks and appreciation to Prof Genevieve Gray

for helping me to receive a scholarship to start my research journey, and her ongoing

encouragement and support throughout my PhD. Her significant contribution to

developing nurse teachers in Vietnam has inspired me in working and learning. My

thanks also go to Assoc Prof Tuyen Do and the staff in the Nephro-Urology Department

at Bach Mai Hospital, Hanoi, Vietnam, for their support of this study. I would also like to

thank all of the patients who agreed to participate in this research, which made an

enormous contribution to the completion of the research findings.

Tremendous thanks are extended to my parents, parents-in-law, sisters and brothers for

their love and encouragement. Special thanks to my Mom and Dad, thank you for all of

your sacrifices. Without your support, I could not have completed this thesis. Above all

my special thanks to my husband Dr Minh Pham, for his enormous and unwavering

support over these years, and to my daughter Michelle Pham, who was born in Australia

during my PhD and my son Vu Pham who has lived and breathed my studying. I hope

that I will inspire you in learning and your success in the near future.

Self-management program for people with chronic kidney disease xvii


Thank you to my friends, Assoc Prof Peter Lewis and his wife Christine Lewis, Colette

Wembenyui, and Huong Tran, who have been a great source of support throughout this

PhD. My thanks also to my director Assoc Prof Binh Ta and colleagues at Hanoi Medical

College for their support and encouragement.

Other thanks to: Lee Jones, Research Methods Group, for her statistics support and advice

which solved my statistical puzzles; Emma Kirkland in the Health Research Services

Team for her ongoing support; and Dr Martin Reese, for his academic language support,

as this thesis is written in my second language.

Lastly, thanks to the professional editor, Dr Gillian Ray-Barruel, who provided

copyediting and proofreading services according to university-endorsed guidelines and

the Australian Standards for editing research theses.

My dream of undertaking a PhD degree abroad would not be possible without generous

financial support of Australia Awards Scholarships (AAS).

I dedicate my success to all of you.

xviii Self-management program for people with chronic kidney disease


Chapter 1: Introduction

1.1 Introduction

The global burden of chronic disease is increasing, with chronic disease-related mortality

growing from 60% (31 million) in 2000 to 68% (38 million) in 2012 (WHO, 2015). Chronic

kidney disease (CKD) is a significant contributor to this burden in both developed and

developing nations, with approximately 80% of people with CKD living in low to middle

income countries (Mills et al., 2015). The disease is classified into stages according to the

estimated glomerular filtration rate (eGFR) with stage five also termed end-stage kidney

disease (ESKD) when kidney replacement therapy (KRT) is required to sustain life

(Webster, Nagler, Morton, & Masson, 2017). Recognised as one of the worldwide public

health problems, CKD is burdensome on individuals and families because of its effects on

daily life and the extensive and long-term healthcare required. For individuals, managing

CKD is a complex task that requires day-to-day self-management through adherence to

medication, blood pressure (BP) management, healthy eating, and exercise. Improved CKD

self-management is known to slow the progression of the disease and to improve health

outcomes (Bonner et al., 2014; Lee, Wu, Hsieh, & Tsai, 2016; Lin, Liu, Hsu, & Tsai, 2017;

Lopez-Vargas, Tong, Howell, & Craig, 2016; Welch et al., 2014). However, in developing

countries such as Vietnam, where health resources are stretched and almost non-existent

primary healthcare service provided by general practitioners care available, effective

strategies are needed to better support people to engage in CKD self-management.

This chapter first describes CKD: its definition, prevalence, risk factors, causes, and

management. This is followed by a discussion about the healthcare system in Vietnam, the

Chapter 1: Introduction 1
significance of this research, research aims, and research questions. Lastly, an overview of

this thesis is presented.

1.2 Chronic Kidney Disease

1.2.1 Definition

Chronic kidney disease (CKD) is defined globally as either kidney damage with urine,

imaging, and histologic abnormalities, or a low estimated glomerular filtration rate (eGFR) ≤

60 mL/min/1.73m² for 3 months or longer (Johnson et al., 2013; Webster et al., 2017). The

impairment of kidney function in CKD is irreversible (Johnson et al., 2013; Webster et al.,

2017), and the reduction in kidney function is classified into five stages based on eGFR (see

Table 1.1). The first stage is when eGFR is normal or increased to equal or greater than 90

mL/min/1.73m². Stage 2 refers to normal or slightly decreased eGFR, with ranges from 60 to

89 mL/min/1.73m². Stage 3 is sub-divided into 3A, mild-moderate decrease, and 3B,

moderate-severe decreased (range in eGFR 45–59 mL/min/1.73m² and 30–44

mL/min/1.73m², respectively). In stage 4, eGFR is severely reduced (15–29

mL/min/1.73m²), and stage 5 is when eGFR is less than 15 mL/min/1.73m². This stage is

also called end-stage kidney disease (ESKD) (Johnson et al., 2013; Webster et al., 2017).

2 Chapter 1: Introduction
Table 1.1. Chronic Kidney Disease Classification

Classification eGFR (mL/min/1.73 m²) Descriptions

Stage 1 ≥ 90 Normal or increased eGFR

Stage 2 60−89 Slightly decreased eGFR

Stage 3A 45−59 Mild-moderately decreased eGFR

Stage 3B 30−44 Moderate-severe decrease eGFR

Stage 4 15−29 Severely reduced eGFR

Stage 5 < 15 ESKD-nondialysis

Stage 5D and 5T ESKD-dialysis and Kidney transplantation

(Johnson et al., 2013; Webster et al., 2017)


Abbreviation: eGFR, estimated glomerular filtration rate; ESKD, end-stage kidney disease;
D, dialysis, T, transplantation

1.2.2 Prevalence

Global

As previously identified, CKD is a public health concern of both developed and developing

nations because of its serious consequences, such as premature death and poor quality of life.

The global prevalence of CKD in all adults is estimated at between 10% to 16% (Dienemann

et al., 2016), with the majority of people in stages 3–5 (10.6%) (Hill et al., 2016). The

estimated prevalence of CKD varies considerably and this may be due to whether the disease

has been diagnosed and also the methods for collecting national data for reporting in

registries.

In the United States (U.S.), the number of people with ESKD has more than tripled from

209,000 in 1991 to 660,000 patients in 2015 (National Kidney Foundation, 2016). The U.S.

Centers for Disease Control and Prevention recently estimated that about 30 million adults or

Chapter 1: Introduction 3
15% of U.S. adults were likely to have CKD (CDC, 2017). There are similar estimates of

CKD for England and Canada (Arora et al., 2013; Roderick, Roth, & Mindell, 2011).

In Australia, the problem of CKD is also on the rise, which is reflected in the number of

people progressing to ESKD and requiring kidney replacement therapy including dialysis

and transplant (ANZDATA Registry, 2016). In 2014, there were estimates of 2,600 new

patients of treated ESKD, with seven new treated patients per day (AIHW, 2016b).

Australian Institute of Health and Welfare (2016b) also reported that the estimated number

of dialysis-treated ESKD and transplant-treated people was 22,100, with 55% on dialysis and

45% living with a functioning transplant. According to ANZDATA Registry (2016), this

increased to 23,012 in 2015.

Asia

The prevalence of CKD is also increasing in Asian nations (Abraham et al., 2016; Wild,

Roglic, Green, Sicree, & King, 2004). For example, the prevalence of CKD was 17.5% in

Thailand, 13.3% in North India (Delhi), 13% in Japan, 13% in China (Beijing), 12.5% in

Indonesia, and 12% in Taiwan (Li et al., 2011; Nasution, Sulaiman, & Shafie, 2013). In

Korea, according to the Korean National Health and Nutritional Examination Survey from

2011 to 2013, an estimated 8.2% of adults were living with CKD, with the majority in stages

1–3 (8.0%) and stages 4–5 (0.2%) (Park, Baek, & Jung, 2016). According to the Singapore

Renal Registry (2018), an estimated 2.3% of the adult population have CKD, and five people

are newly diagnosed with CKD each day.

Vietnam

In Vietnam, the number of people with CKD is increasing rapidly. According to Tuyen

(2011), it is estimated that there are 100 to 150 new patients with CKD per million of

4 Chapter 1: Introduction
population per annum, and about 10,000 patients with ESKD are on haemodialysis. Hyodo et

al. (2017) estimated that six million people have CKD, which is about 6% of the total

Vietnamese population. Moreover, in 2013, Hyodo et al. (2017) estimated that 80,000 people

had ESKD (although many do not receive dialysis), and each year a further 8,000 people are

newly diagnosed with ESKD. The growing number of people with CKD has led to an

increased need for healthcare services.

1.2.3 Risk Factors and Causes

Risk factors

Globally the major risk factors for CKD are diabetes (particularly type 2 diabetes),

cardiovascular disease, hypertension, smoking, and obesity (AIHW, 2009, 2016a; CDC,

2017). The risk factors for CKD can be grouped into three main categories: namely, non-

modifiable, modifiable behavioural, and biomedical (AIHW, 2009, 2016a; CDC, 2017) (see

Table 1.2).

Table 1.2. Risk Factors for Chronic Kidney Disease

Non-modifiable Modifiable Behavioural Biomedical

Family history and genetics Tobacco smoking Diabetes

Increasing age Physical inactivity High blood pressure

Previous kidney disease or injury Poor nutrition Cardiovascular disease

Low birth weight Overweight and obesity Systemic kidney


inflammation

Male gender

(AIHW, 2009, 2016a; CDC, 2017)

In addition, socio-economic factors, such as income, education, and environmental factors

may also affect the incidence, prevalence, and progression of CKD. Researchers in the

Chapter 1: Introduction 5
United Kingdom (U.K.), the U.S., India, and Taiwan have found that having a low income

has a considerable effect on the development of CKD compared to a high income (Drey,

Roderick, Mullee, & Rogerson, 2003; Singh et al., 2013; Wen et al., 2008; White et al.,

2008).

In Vietnam, risk factors for CKD are known to be increasing due to the ageing population,

increasing prevalence of hypertension and obesity, and the high rates of tobacco and alcohol

use (Ito et al., 2008). In addition, the preferential consumption of foods that are high in

sodium and/or in saturated and partially hydrogenated fats (Hoy, Rao, Nhung, Marks, &

Hoa, 2013; Nguyen, 2009) is also contributing to the growing problem of CKD.

Understanding the risk factors could help healthcare providers (nurses and medical

practitioners) to assist patients to reduce the risk for developing CKD, and once it is

established, to more effectively self-manage CKD.

Causes

Diabetes and hypertension are both risk factors for and causes of CKD. Diabetes is the

leading cause of CKD in most countries (Abboud & Henrich, 2010; Hung et al., 2017; Jha,

Wang, & Wang, 2012; Orantes-Navarro et al., 2017). Diabetes causes structural and

functional changes in the kidneys, mostly due to glomerulosclerosis (Lim, 2014) that directly

increases glomerular permeability and worsening albuminuria (Toth-Manikowski & Atta,

2015). Diabetic nephropathy accounts for about 30% to 45% of ESKD cases worldwide,

with 44% in the U.S. (CDC, 2017) and 37% in 2015 in Australia (ANZDATA Registry,

2017).

Hypertension is another common cause of CKD, as high BP causes damage to the kidney’s

arterial blood vessels (Huan, Cohen, & Townsend, 2015). Hypertension can also be a

complication of CKD (Thomas, Kanso, & Sedor, 2008). The kidneys have a vital role in BP

6 Chapter 1: Introduction
homeostasis, so that when kidney function deteriorates, the kidneys are less able to help

regulate BP. Therefore, as the prevalence of hypertension increases in both developed and

developing countries, so does the prevalence of CKD. For example, in the U.S., hypertension

accounts for 29% of new cases of ESKD (CDC, 2017). In Australia, hypertension is

estimated to cause 13% of ESKD (ANZDATA Registry, 2017).

Glomerulonephritis (GN) is another major cause of CKD (Abraham et al., 2016; Jha et al.,

2013). Glomerulonephritis results from infections, autoimmune responses, and exposure to

drugs and toxins (Jha et al., 2013; Levey & Coresh, 2012). In Asian countries, nephrotoxic

herbal medications, environmental toxins (e.g., some pesticides, inadequate water supply),

infectious diseases (HIV or IgA nephropathy), and the use of unregulated food additives can

result in renal impairment (Imai & Matsuo, 2008; Jha et al., 2013). It should be noted that

GN is no longer the leading cause of CKD in developed nations, although it is cited as a

common cause in many countries in Asia and South Asia. For instance, the results from

several studies indicate that GN is the significant leading cause of ESKD in China,

Bangladesh, Taiwan, Japan, and the Philippines with 47.3%, 25.5%, 25%, 21%, and 20%,

respectively (Abraham et al., 2016; Iseki, 2008; Jha et al., 2013; Nakai et al., 2004; Zhang et

al., 2008).

In Vietnam, where access to healthcare is limited (see also section 1.3) and accurate data

collection is problematic, the prevalence and causes of CKD are likely to be highly

underestimated (Nguyen, 2013; Nguyen, 2014). As both diabetes and hypertension have

increased dramatically in Vietnam, there will be a rise in CKD. In one study conducted in a

large hospital in Hanoi (Bach Mai Hospital), glomerular diseases accounted for 26.1% of

people with CKD (Vuong & Tran, 2013). Hyodo et al. (2017) found that the main causes of

ESKD in patients receiving haemodialysis were diabetic nephropathy (74%) and chronic GN

Chapter 1: Introduction 7
(9%). The prevalence of GN is high because Vietnamese people rely on traditional medicines

that can be toxic to the kidneys (Duong, Olszyna, Nguyen, & McLaws, 2015). Other risk

factors such as inadequate water supply, use of pesticides, and labouring in hot, humid

conditions are also likely to cause renal failure, which is often not diagnosed or treated.

These risk factors are causing a CKD epidemic in other countries where the disease is

classified as CKD of unknown origin (Orantes-Navarro et al., 2017).

1.2.4 Management and Treatment

Early intervention to manage CKD by using appropriate therapies is extremely important to

reduce the impact and progression of the disease (Johnson et al., 2013; Sharaf El Din, Salem,

& Abdulazim, 2016). There are two main methods to manage the early stages of CKD: non-

pharmacological and pharmacological (Johnson et al., 2013). However, when the eGFR

decreases to less than 15 mL/min/1.73m², kidney replacement therapy (KRT) (including

haemodialysis, peritoneal dialysis, and kidney transplantation) is essential.

Non-pharmacological therapy is used for managing the early stages of CKD, and includes

dietary changes and lifestyle modifications (Johnson et al., 2013; Turner, Bauer,

Abramowitz, Melamed, & Hostetter, 2012). Dietary changes include adopting a healthy

eating plan that involves sodium and fat reduction. Lifestyle modifications are weight

reduction, increased physical activity (i.e., exercise and brisk walking), moderation of

alcohol consumption, and smoking cessation (Tuot, Plantinga, et al., 2013; Welch et al.,

2014). These interventions are known to delay the progression and prevent the consequences

of CKD (Johnson & Mathew, 2007), particularly through controlling BP, cholesterol and

blood glucose (Johnson et al., 2013). Moreover, lifestyle modifications, discussed in Chapter

2 (see section 2.4.2), are important even if medication interventions are also implemented.

8 Chapter 1: Introduction
Pharmacological treatment is used to control BP, blood glucose and cholesterol levels as

crucial interventions to slow the progression of CKD and avoid cardiovascular morbidity and

mortality (Nicholas, Vaziri, & Norris, 2013; Norris & Nicholas, 2015). The goal of

pharmacological treatment is to work towards achieving clinical targets for BP less than

140/90 mmHg, or if albuminuria is present BP should be less than 130/80 mmHg (Nicholas

et al., 2013; Norris & Nicholas, 2015). Targets for glycosylated haemoglobin (HbA1c) and

serum cholesterol are less than 7.0% and less than 4.0 mmol/L, respectively (Kidney Health

Australia, 2015).

The focus of this thesis is on people with CKD stages 3–5 who are not receiving KRT, and

therefore lifestyle modifications as well as adherence to medications are very important to

slow the progression of kidney disease. Lack of awareness of having a kidney problem in

people with CKD is high in many countries. Plantinga et al. (2008) found that less than 6%

of patients with CKD stage 3 and less than 30% with CKD stages 4–5 reported never seeing

a renal medical practitioner. Vassalotti, Li, McCullough, and Bakris (2010) in a national

screening study in the U.S. of 90,000 adults at high risk of CKD found that being aware of

having CKD was very low in all ethnic groups. For instance, only 6.3% of African

Americans, 6.8% of Native Americans, 8.6% of Caucasians, 11.1% of Hispanics, and 11.9%

of Asians and Pacific Islanders were aware that they had CKD (Vassalotti et al., 2010). In

Asian countries, awareness is also low. For instance, Hwang, Tsai, and Chen (2010)

indicated that 3.5% to 9.7% of Taiwanese with CKD were aware that they had the disease. In

a study of 2,576 adults in China, awareness of CKD was only 1.0% (Lu et al., 2010). This

highlights the need to improve awareness of CKD and kidney disease-specific knowledge in

those at risk for or who do have CKD.

Chapter 1: Introduction 9
1.2.5 Healthcare in Vietnam

Healthcare services

Vietnam has a population of about 90 million people (Shillabeer, 2016; Tuan, 2015) and up

to 80% of the population live in rural areas (Hyodo et al., 2017). The changing disease

pattern towards greater mortality due to chronic diseases and an increase in the older

population is creating more pressure on the Vietnamese healthcare system (Tuan, 2015;

Tuyen, 2011). For instance, hospital admissions due to chronic disease increased from 39%

in 1986 to 68% in 2002 (Minh, Huong, & Giang, 2008). The Vietnamese health

infrastructure is overwhelmed with overcrowded hospitals, where it is common that hospital

beds accommodate two or more patients in the same bed (Tuan, 2015).

The healthcare system in Vietnam is complicated by the administrative structure, regulations,

and a lack of coordination among different sectors. The Vietnamese health service comprises

four tiers. The lowest level are commune health centres in local communities, then

polyclinics and general hospitals, provincial hospitals, and national hospitals (Shillabeer,

2016). People usually seek primary health care at commune-level healthcare centres and are

then referred up through the tiers until they reach a national hospital (Shillabeer, 2016),

although there is great reluctance to use the lower tiers as these services are poorly equipped

and the staff have very little training. General practitioners (family doctors) are rare in

Vietnam and are just beginning to emerge. National hospitals, such as Bach Mai Hospital,

are specialised centres, although most people bypass lower level services to be seen by a

medical practitioner working in a more prestigious hospital.

The complicated healthcare system contributes to the fact that more than 70% of all sick

people do not seek care from any formal healthcare source (Ha, Berman, & Larsen, 2002).

They often wait for the illness to go away, or purchase medication for self-treatment from

10 Chapter 1: Introduction
private pharmacies or drug sellers who do not have any medical qualifications, or they

follow the advice of family members (Giang & Allebeck, 2003). Self-medication is highly

prevalent in Vietnam (Ha et al., 2002), as most medications can be purchased without a

medical practitioner’s prescription. However, self-medication can lead to the risk of

developing serious complications, such as adverse effects on kidney function, risk of

cardiovascular events, and hepatic injury (Berardi, 2005).

One of the main reasons for avoiding healthcare services is that about 28 million people are

too poor to pay hospital fees. Vulnerable groups (such as the poor, the elderly, and those in

rural areas) will generally choose to ignore their illness or undertake self-treatment (Thuan,

Lofgren, Lindholm, & Chuc, 2008), delaying seeking medical advice until the disease is in

an advanced stage.

The cost of CKD treatment is an example, and the cost of haemodialysis is very expensive.

Currently, the average income per person is US$1,730 per annum, but the average cost for

thrice-weekly haemodialysis per year is US$3,600 (US$25 per session) (Duong et al., 2015).

The Vietnamese government does provide a national health insurance system and will pay

80% of the dialysis treatment cost or up to 100% for certain patient groups (i.e., determined

on being below the poverty line, revolutionary contributors, and social protection group)

(Duong et al., 2015); however, all patients need to find the money to pay for 20% or more of

the treatment fee as well as other costs. For instance, transportation, food, and

accommodation after each treatment session are also a financial burden on patients. For these

reasons, haemodialysis treatment is too expensive for most people (Bui, 2007). There is also

a lack of specialist renal medical practitioners, and dietitians as a discipline are just

beginning to emerge in Vietnam. It is not until 2020 when hospitals will be required to have

Chapter 1: Introduction 11
a kitchen and provide meals to patients. Consequently, there is very little support for patients

to adhere to a management plan to slow the progression of CKD.

Nursing care

In Vietnam, nursing care in hospitals is mainly focused on technical nursing care, which is

often not centred on the needs of patients and families (Ha & Nuntaboot, 2016; Harvey,

Calleja, & Phan, 2013). Nurses are still viewed as medical assistants and are not permitted to

make independent nursing decisions (Pron, Zygmont, Bender, & Black, 2008), even though

they may have completed a 3- or 4-year Bachelor of Nursing qualification. These courses,

however, are mainly taught by medical practitioners using a medical model, with the nursing

content largely provided as teaching a limited range of skills. Medical practitioners’ orders

direct nursing interventions (Gallagher, Partridge, Tran, Lubran, & Macrae, 2017). One

example is that medication dosages are calculated by medical practitioners rather than nurses

prior to administering to patients (Pron et al., 2008). Family members have a vital role in

delivering direct nursing care to patients, such as attending to the hygiene needs of the

patient and bringing food (Khuu, 1999; Pron et al., 2008). Discharge planning is not

provided, and patient education is provided only by medical practitioners (Pron et al., 2008).

These examples illustrate the low social status and current practice of nurses in Vietnam.

However, a recent study examined how nurses provided health promotion to patients with

diabetes and CKD (Pham & Ziegert, 2016). This study found that nurses do have an

important role in health promotion, and they do this by creating positive relationships with

patients, supporting patients to make lifestyle modifications, and also educating patients and

families on health, disease, and self-care (Pham & Ziegert, 2016). The study findings further

highlight that nurses can provide patient education in clinical settings to help patients to

better manage their chronic disease.

12 Chapter 1: Introduction
1.3 Significance of the Research

This research is significant for three main reasons. First, CKD is rising globally and is a

major problem in developing countries such as Vietnam (Hyodo et al., 2017). It is a disease

that progresses to a point where very costly KRT is required to sustain life, thus increasing

the burden on individuals, families, and societies. Slowing the progression of CKD to avoid

needing dialysis and to reduce the risk of death due to cardiovascular complications requires

urgent attention in Vietnam due to the already overstretched healthcare system. Second, there

is increasing evidence that supporting patients to undertake self-management is an effective

approach to managing CKD and to slow the disease progression. Self-management is about

getting a person to be actively involved in looking after their disease. Providing patient

education to engage in self-management behaviour is therefore warranted to reduce the

disease burden and improve quality of life. Third, a number of studies have occurred in

ESKD for those receiving HD regarding improving adherence to treatment including that of

self-management, but less research has been undertaken for those with earlier stages of

CKD. Finally, this is the first randomised controlled trial (RCT) of a CKD self-management

intervention conducted in Vietnam.

1.4 Research Aims

This research aims to address the gap in knowledge and self-management for people with

CKD stages 3–5 (i.e., non-dialysis CKD). This research has three phases. The aims of Phase

1 and 2 are to translate, validate, and psychometrically evaluate two instruments in the

Vietnamese language. The instruments are needed to measure key outcomes (knowledge and

self-management) in Phase 3. The final phase aims to test the effectiveness of a self-

management intervention designed for pre-dialysis CKD patients attending renal clinics in

Vietnam.

Chapter 1: Introduction 13
1.5 Research Questions

The research questions are as follows:

Phase 1 and 2

1. Is the Vietnamese version of the kidney disease knowledge instrument reliable and

valid to measure knowledge of people with CKD?

2. Is the Vietnamese version of the CKD self-management instrument a reliable and

valid measure of self-management behaviour among people with CKD?

Phase 3:

3. Among Vietnamese people with CKD stages 3–5, does a self-management

intervention improve knowledge, self-efficacy, and self-management behaviour

compared to standard care in a hospital renal clinic?

4. Among Vietnamese people with CKD stages 3–5, does a self-management

intervention improve blood pressure control and health-related quality of life

compared to standard care in a hospital renal clinic?

1.6 Thesis Overview

This thesis comprises seven chapters. The first chapter has examined CKD, healthcare in

Vietnam, significance of the research, research aims and questions. The next chapter

provides a literature review of the impact of CKD, self-management and self-care in chronic

disease, particularly CKD self-management, and research of CKD self-management, and

significant gaps in CKD self-management research. Chapter 3 critically examines social

cognitive theory (SCT) as the theoretical foundation for a CKD self-management

14 Chapter 1: Introduction
intervention. Chapter 4 presents the research methods to address the research questions and

is divided into three phases. Phase 1 involves translation and validation of the CKD

knowledge (KiKS) and self-management (CKD-SM) instruments into Vietnamese. Phase 2

is a test/retest of these instruments in people with CKD in Vietnam. Phase 3 is a pragmatic

randomised controlled clinical trial (pRCT) of a self-management intervention. The results of

these phases are presented together in Chapter 5. Chapter 6 then discusses and compares the

study findings with the current literature. The final chapter reviews the strengths, limitations,

implications, and the main conclusions of the research.

Chapter 1: Introduction 15
Chapter 2: Literature Review

2.1 Introduction

This chapter will begin with a review of the literature related to the impact of CKD on

physical, psychological, and social domains. This chapter will then review the literature

developing the argument for differences in self-care and self-management. This is

followed by a critical appraisal of existing systematic reviews that included randomised

controlled trials of CKD self-management interventions. The chapter then concludes with

an argument for the significant gaps in knowledge and why this research is warranted.

2.2 Impact of Chronic Kidney Disease

The following section describes the physical, psychological, and social impact of CKD.

These three domains are associated with an individual’s health-related quality of life

(HRQoL). Therefore, these three domains are interconnected, and CKD-related

symptoms or problems in one domain will impact on the other domains.

2.2.1 Physical Impact

Chronic kidney disease significantly increases the risk of morbidity and mortality and

also decreases a person’s quality of life (AIHW, 2016b; Chin et al., 2008). Chronic

kidney disease is associated with a reduction in physical functioning and can cause

several complications, including cardiovascular disease, anaemia, metabolic imbalances,

and malnutrition (Almutary, Bonner, & Douglas, 2013; Almutary, Douglas, & Bonner,

2016; Bonner & Douglas, 2014; Thomas, Kanso, et al., 2008; Wright & Hutchison,

2009).

Chapter 2: Literature review 17


A range of physical CKD symptoms seem to impact substantially on people. For

example, two systematic reviews indicated that people with CKD, particularly in the later

stages, experience symptoms such as fatigue/tiredness, pain, pruritus, dry skin,

constipation, nausea, sleep disturbance, dyspnoea and restless legs (Almutary et al., 2013;

Murtagh, Addington-Hall, & Higginson, 2007). Fatigue is one of the most prevalent and

distressing symptoms in people with CKD (Almutary, Bonner, & Douglas, 2016). It has

been reported as affecting up to 90% of people (Almutary et al., 2013). Fatigue can

influence everyday life due to tiredness and reduced energy levels to undertake daily

activities (Finnegan-John & Thomas, 2013). A number of studies have shown that fatigue

has major repercussions on functioning and HRQoL (Bonner, Caltabiano, & Berlund,

2013; Jhamb et al., 2013; Picariello, Moss-Morris, Macdougall, & Chilcot, 2017b). Those

with higher fatigue levels have lower physical health and mental well-being (Bonner et

al., 2013). In a recent study in which individual symptoms were shown to cluster

together, fatigue was strongly connected to all five symptom clusters (Almutary, Douglas,

et al., 2016). This highlights the need for increased support for people with CKD to

reduce their levels of fatigue.

However, CKD is usually asymptomatic and often unrecognised until an advanced stage

of kidney failure. The lack of debilitating symptoms may mean that people are less

inclined to believe that they have CKD (Braun, Sood, Hogue, Lieberman, & Copley-

Merriman, 2012; Picariello, Moss-Morris, Macdougall, & Chilcot, 2017a), and could

reduce their engagement in self-management behaviours, particularly those related to

lifestyle modifications. Providing support is therefore essential to assist people in

knowing what CKD is, how to identify early symptoms, and how to take steps to manage

their disease.

18 Chapter 2: Literature review


2.2.2 Psychological Impact

Chronic kidney disease also has a significant impact on the psychological well-being of

people because of the decline in kidney function and the burden of long-term treatment

(White & McDonnell, 2014). In a systematic review, Almutary et al. (2013) found that

people with CKD stage 4 reported having more psychological problems in comparison to

those with stage 5. Psychological problems include feeling anxious, worrying, feeling

sad, depression, denial, loss of control, and fear of death (Almutary, Bonner, et al., 2016;

Bonner & Douglas, 2014). The psychological problems influence an individual’s life and

impact on other roles such as maintaining employment and sustaining social relationships

(Renkema et al., 2011). Thus, providing patient education may also assist psychological

well-being.

2.2.3 Social Impact

The social consequences of CKD are enormous due to the effects on individuals, family

members, and the government. The consequences include role changes within the family,

employment status, financial status, ability to continue education, reduced social network

and activities, change in residential location, and holiday and recreation (Bonner &

Douglas, 2014; Jansen, Rijken, Heijmans, Kaptein, & Groenewegen, 2012; Kidney

Health Australia, 2009). Having poor health, fatigue, anaemia, and pain are some reasons

why having CKD also impacts on social aspects of a person’s life. People with CKD have

difficulties taking part in other activities because of the burden of time spent visiting

medical practitioners, and adhering to medications and dialysis treatment schedules

(Jansen et al., 2012; Kidney Health Australia, 2009). People with CKD are involved in a

life-long commitment to treatment in order to delay CKD progression, as this disease

cannot be cured. Consequently, the families of people with CKD may experience

Chapter 2: Literature review 19


financial difficulties as a consequence of reduced work leading to a loss of income to care

for a family member, and other health costs (Ramachandran & Jha, 2013). People often

live with their family members or significant others; therefore, entire families also feel

the impact of CKD (Hoang, Green, & Bonner, 2018).

Chronic kidney disease causes a significant economic burden on health and social care

services (Mills et al., 2015). The cost of treatment and caring for people with CKD and

the associated consequences are increasing every year. According to World Kidney Day

(2015), treatment of CKD in the U.S. was estimated at $48 billion per year. In England,

the cost of CKD in 2009 and 2010 was estimated to be £1.44 to £1.45 billion, and costs

related to the consequences of CKD are also rising, estimated at £174 to £178 million

(Kerr, Bray, Medcalf, O'Donoghue, & Matthews, 2012). A recent study conducted with

data from Europe, North America, and Australasia reported that the annual hospital costs

for people with CKD ranges from £403 (stages 1 to 3B) to £525 (stage 5 but not on

dialysis) (Kent et al., 2015). However, the annual hospital cost is significantly increased

for those receiving dialysis and it also depends on how long they are receiving it. For

example, it ranges from £18,986 for those in the year of initiation to £23,326 for the

following years (Kent et al., 2015). A recent systematic review indicates that effective

interventions to slow the decline in renal function would have saved US$33 billion

between 2000 to 2010, and the amount saved would be even higher if interventions were

initiated in those with earlier stages of CKD (Vanholder et al., 2017).

In summary, the impact of CKD on the physical, psychological, and social domains of

life contributes to the reduced HRQoL of those with CKD (Almutary, Douglas, &

Bonner, 2017). There is, however, limited research on the impact of CKD on people in

Vietnam. The impact of haemodialysis does create a significant economic burden for

20 Chapter 2: Literature review


Vietnamese households due to the gap in costs for haemodialysis and medications

(Duong et al., 2015). The family may need to spend all of their savings, borrow from

neighbours, or sell family possessions to seek health care treatment at the hospital (Minh,

Huong, Giang, & Byass, 2009; Pron et al., 2008). This leads to patients reducing the

amount of dialysis they receive (Duong et al., 2015). Thus, slowing the progression of

CKD and improving the care needed to sustain life for people living with CKD is crucial

in countries such as Vietnam. Providing patients with self-management education is

therefore important to prevent further deterioration of kidney function and reduce the

disease’s impact on their health-related quality of life.

2.2.4 Health-Related Quality of Life

Health-related quality of life is one indicator of the overall well-being of an individual. It

refers to the person’s quality of life impacted by health-related problems, and it can

provide important information concerning how the individual is coping with their CKD

(Ibrahim, Teo, Che Din, Abdul Gafor, & Ismail, 2015; Pagels, Söderkvist, Medin,

Hylander, & Heiwe, 2012). Being diagnosed with CKD affects all the aspects of life

reviewed in the previous section, and HRQoL is known to be compromised not only in

advanced CKD stages but also in earlier stages of the disease (Aggarwal, Jain, Pawar, &

Yadav, 2016; Cruz et al., 2011; Pagels et al., 2012). For instance, Ibrahim et al. (2015)

found that a lower HRQoL was associated with a higher risk of kidney function

reduction, and the consequences were increasing mortality and need for hospitalisation.

Improving HRQoL in people with CKD is essential to prevent the negative impact of the

disease on physical, psychological, and social domains (Aggarwal et al., 2016). Self-

monitoring and managing the disease, adhering to treatment, and responding to changes is

likely to maintain an individual’s HRQoL (Barlow, Wright, Sheasby, Turner, &

Chapter 2: Literature review 21


Hainsworth, 2002). Jordan and Osborne (2007) suggest that the purpose of chronic

disease self-management education programs is to empower people through providing

information and teaching of skills to better self-manage their condition, which is then

likely to affect their overall health and wellbeing. Hence, providing self-management

education could reduce the burden of symptoms and improve HRQoL in the earlier stages

of CKD.

2.3 Self-Management and Self-Care in Chronic Disease

In chronic disease, the goal is to keep the illness under the best possible control,

preventing deterioration and complications of the disease on physical, psychological, and

social functioning (Clark, 2003). In order to achieve this goal, people need to have skills

to perform health-related tasks to manage their illness, which includes self-care and self-

management. The concepts of self-care and self-management are often used

interchangeably in the existing literature although there are differences in meaning

(Kralik, Price, & Telford, 2010; Wilde & Garvin, 2007). The following sections discuss

the concepts of self-care and self-management.

2.3.1 Self-Care

Self-care refers to the everyday activities that an individual undertakes to maintain their

physical and mental health. These activities are focused on maintaining good health by

preventing illness rather than managing an existing illness (Barlow et al., 2002; Clark et

al., 1991; Ryan & Sawin, 2009). Daily activities include eating, drinking, sleeping,

personal hygiene, and other activities that can be considered relevant in daily life (i.e.,

working, meeting with friends). Self-care is therefore something that all people do (or

ought to do).

22 Chapter 2: Literature review


2.3.2 Self-Management

Self-management in chronic disease refers to the positive efforts of individuals to manage

and to be actively involved in their healthcare in order to optimise health, prevent

complications, control symptoms, and follow treatment regimens (Novak, Costantini,

Schneider, & Beanlands, 2013; Von Korff, Gruman, Schaefer, Curry, & Wagner, 1997).

In other words, self-management is about activities that are needed in addition to self-care

to control an existing chronic disease. For the remainder of this thesis, the term self-

management is used.

Chronic disease self-management has been discussed for over four decades in the

literature (Corbin & Strauss, 1985; Lorig & Holman, 2003; Novak et al., 2013). Corbin

and Strauss (1985; 1988) explain that self-management is: (1) work to care for the disease

(taking medication, medical appointments, exercising or eating a special diet), (2) work to

maintain a normal life (e.g., chores, social contacts, hobbies), and (3) emotional work

required to deal with feelings (such as frustration, anger, depression). People with chronic

disease need to be responsible for their disease management in order to improve clinical

symptoms and HRQoL (Grady & Gough, 2014; Lorig & Holman, 2003; Novak et al.,

2013). The following sections discuss skills and required components in self-

management.

Skills

While early research in chronic disease self-management focused on adherence to

medical treatments, the research has moved towards a much broader understanding of

skills required to improve an individual’s ability to self-manage their chronic disease

(Grady & Gough, 2014; Lorig, 2002; Lorig & Holman, 2003; Novak et al., 2013). These

Chapter 2: Literature review 23


skills are confidence and knowledge (Lorig, 2002; Mackey, Doody, Werner, & Fullen,

2016).

First, confidence is the ability to engage in necessary actions to manage a chronic disease.

Several authors (Lorig, 2002; Lorig & Holman, 2003; Riegel & Dickson, 2008) describe

this as a person who is an active participant in their treatment, and who is able to deal

with problems, make decisions, and maintain their own health. Individuals’ confidence in

identifying problems related to their illness and seeking solutions is important in

developing self-management skills to maintain their health (Mackey et al., 2016). It is

because a person knows themselves better than others do, and they are also the best judge

of what are achievable goals (Lorig, 2002). Lorig (2002) also suggested that individuals

need confidence to be able to make an action plan that works best for them to achieve

their goals. Schwarzer (2014) has shown that when patients are confident in their ability

to manage their disease, they achieve better health outcomes.

Living with chronic disease, people need to have a strong belief in their ability (self-

efficacy) to be confident in certain behaviours needed to manage their disease (Freund,

Gensichen, Goetz, Szecsenyi, & Mahler, 2013; Lorig & Holman, 2003; Ludman et al.,

2013). In other words, improvements in self-efficacy could therefore lead to improved

confidence to figure out solutions when new problems arise while living with chronic

disease (Lorig & Holman, 2003; Ludman et al., 2013). What is crucial is that healthcare

providers are instrumental in supporting patients to acquire that confidence (Lorig, 2002).

Self-management education can build confidence in patients to maintain their health by

supporting them to engage in activities such as managing their medical treatment and

psychological well-being (Lorig, 2002; Lorig & Holman, 2003).

24 Chapter 2: Literature review


Knowledge, particularly disease-related knowledge, is the second skill needed for

effective self-management. Having knowledge to manage symptoms or select and/or

adhere to an appropriate treatment is essential to reduce the impact of disease and to

improve HRQoL (Lorig & Holman, 2003; Novak et al., 2013). A recent review (Mackey

et al., 2016) indicates that disease-related knowledge is integral to self-management

because having adequate knowledge is needed for active engagement in making

decisions. Two further systematic reviews indicate that providing self-management

education is vital in improving patients’ knowledge of their disease, which helps to

prevent complications and improve their quality of life (Bhurji, Javer, Gasevic, & Khan,

2016; Dinh, Bonner, Clark, Ramsbotham, & Hines, 2016). However, two recent studies

indicate that many people with chronic disease have inadequate knowledge about their

disease, medications they take, medicine side effects, and required activities to manage

their disease and promote their health (Gallagher, Warwick, Chenoweth, Stein-Parbury,

& Milton-Wildey, 2011; Song et al., 2013). For example, in a study conducted in China

with a sample of people known to have a chronic disease (n = 925), Song et al. (2013)

found that few were aware that they had a chronic disease. In another study conducted in

Australia of 118 participants with chronic illnesses who were assessed on their

medication knowledge found that participants’ medication knowledge was low [(mean =

47.61, SD = 18.73) out of a potential 100] (Gallagher et al., 2011).

In summary, improving self-management skills, namely confidence and knowledge, in

those with a chronic disease is needed to help individuals maintain their health, which in

turn may slow disease progression (Lorig & Holman, 2003), result in less symptom

burden and complications (Cramm & Nieboer, 2012), and lead to a better quality of life

(Ludman et al., 2013). Education is one strategy to improve chronic disease knowledge

and to improve confidence in self-managing that disease.

Chapter 2: Literature review 25


Components

The successful management of chronic disease is when people have self-management

skills to be actively involved in taking activities needed to promote their health (Lorig,

2002; Lorig & Holman, 2003). However, self-management skills are not sufficient to lead

to better chronic disease self-management. Seminal researchers in chronic disease argue

that other required components including communication, partnership in healthcare, and

adherence (Grady & Gough, 2014; Holman & Lorig, 2000; Lorig, 2002) also contribute

to the success in self-managing chronic disease. In addition, self-integration, problem-

solving, social support, and taking action are also required to assist people to effectively

manage chronic illness (Audulv, Asplund, & Norbergh, 2012; Brooks, Andrade,

Middleton, & Wallen, 2014; Hill-Briggs, 2003; Lin, Anderson, Chang, Hagerty, &

Loveland-Cherry, 2008; Lorig & Holman, 2003; Whittemore, 2005).

First, communication is important component that enables individuals with chronic

disease to work effectively together with their healthcare providers (Beverly, Worley,

Court, Prokopakis, & Ivanov, 2016; Lorig, 2002; Schulman-Green, Jaser, Park, &

Whittemore, 2016). In other words, those with a chronic disease must feel able to report

symptoms, problems or any concerns to healthcare providers and, in turn, healthcare

providers need to listen and provide information, support, answers, and guidance to assist

the patients. Good communication that is appropriate for an individual patient’s needs and

circumstances is likely to assist with supporting self-management behaviours (Beverly et

al., 2016; Stuckey et al., 2015).

Second, partnership in healthcare is when patients and healthcare providers work together

in planning chronic disease treatments and making decisions (Grady & Gough, 2014;

Holman & Lorig, 2000; Lorig, 2002). A healthcare partnership works better when there is

26 Chapter 2: Literature review


effective communication between both patients and healthcare providers. However, in the

Vietnam context, the medical practitioner is still the dominant person in the partnership

and the patients defer to them. At this time, the Western view of partnership in healthcare

is not yet appropriate for Vietnam.

Adherence is another component of self-management. Adherence refers to patients’

behaviours which coincide with medical or health advice, including taking medication,

following a diet, lifestyle modifications, and attending clinics (McDonald, Garg, &

Haynes, 2002). Adherence is more likely if communication is effective and partnership in

care with healthcare providers is in place (Beverly et al., 2016). In Vietnam, if

information is provided by a medical practitioner or with support from a medical

practitioner, patients do try to adhere to treatment regimens.

Fourth, self-integration is a process in which self-management activities are assimilated

into daily life (Audulv et al., 2012; Lin et al., 2008). For example, it is about how a

person maintains and integrates a suitable diet, taking medications, participating in other

lifestyle modifications, and adhering to other treatments in everyday life. An analysis of

the literature indicates that integration is necessary for self-management (Whittemore,

2005). Nursing interventions such as providing education, symptom recognition and

management, alleviating uncertainty, promoting self-management, providing assistance

with daily living activities, and developing community resources assist patients to

integrate chronic disease treatment into their lives (Whittemore, 2005).

Problem-solving, which refers to the process of using the self-management skills and

activities needed to problem-solve (Hill-Briggs, 2003; Lorig & Holman, 2003). In other

words, a person is able to identify problems and generate possible solutions to maintain

behaviours to manage their disease. People with chronic disease can be taught to identify

Chapter 2: Literature review 27


problems related to their disease, be provided with possible solutions based on their

problems, and should be assisted with selecting the most suitable solution and with the

evaluation of results (Lorig & Holman, 2003). Abazarian, Baboli, Abazarian, and

Ghashghaei (2015) suggest that providing education about problem-solving skills will

result in reducing symptom burden in people with chronic disease.

Social support refers to the support that a person receives from family members, friends,

significant others, and healthcare providers in order to manage their chronic disease

(Brooks et al., 2014; Gallant, 2003; Langford, Bowsher, Maloney, & Lillis, 1997).

Reviews from literature have shown that social support affects people’s health behaviours

and their health outcomes (Gallant, 2003; Holt-Lunstad, Smith, & Layton, 2010). Social

support can help to reinforce people to maintain their confidence to adhere to their

treatment plans and to perform healthy behaviours (DiMatteo, 2004; Gopinath, Harris,

Burlutsky, & Mitchell, 2013). However, inadequate social supports, including poor

communication with medical practitioners, low family support, and financial problems

have often been recognised as barriers to active self-management among people with

chronic disease (Jerant, Friederichs-Fitzwater, & Moore, 2005).

Taking action is also an important component whereby individuals learn how to integrate

changes in behaviour to care for themselves (Lorig & Holman, 2003; Novak et al., 2013).

For instance, learning how to incorporate healthy eating into everyday life, remembering

to take medications, stopping smoking, and being more active are all behaviours

important in preventing complications and improving quality of life in people with

chronic conditions. Education programs that support people to take action are required. In

Vietnam, as previously described in Chapter 1, nurses work under the direction of

medical practitioners (Pron et al., 2008) and consequently are restricted to providing very

28 Chapter 2: Literature review


little chronic disease education in either inpatient wards or outpatient clinics. Moreover,

medical practitioners are only able to provide limited patient education (Pham & Ziegert,

2016). In addition, patients may see different healthcare providers each hospital visit,

which makes it more difficult for patients to manage their disease. This is because

different providers may provide conflicting advice (Riegel & Carlson, 2002). Thus, it is

difficult for patients with chronic disease to take action and to engage in effective self-

management. Simple, easy-to-deliver, self-management education in Vietnam could be

effective in supporting patients to take action in managing their chronic disease.

In conclusion, successful self-management requires the integration of skills and required

components to manage the work of living with chronic health conditions in everyday life

and to deal with the psychosocial aspects of the conditions (Lorig, Sobel, & Gonzalez,

2012). When people believe in their ability to take action to overcome daily challenges in

managing their chronic disease, they are more likely to perform it frequently, and this in

turn is likely to achieve better health outcomes. People with chronic disease could master

self-management with guidance and support from healthcare providers, particularly

nurses helping patients learn skills to be active in care, acquire confidence in seeking

support and utilising resources to master problems, making decisions about their care, and

adhering to recommended treatment regimens. In the following section, the skills and

relevance components of self-management are specifically described in the context of

CKD.

2.4 Chronic Kidney Disease Self-Management

Chronic kidney disease self-management has a substantial number of daily tasks that a

person needs to perform to manage the impact of the disease and to slow its progression

(Curtin, Mapes, & Thomas-Hawkins, 2001; Lin, Wu, Wu, Chen, & Chang, 2012; Ong,

Chapter 2: Literature review 29


Jassal, Porter, Logan, & Miller, 2013). The following sections review the previously

described skills in the context of the CKD self-management. Finally, a review of

relevance required components of self-management for people with CKD is discussed

including communication, partnership in healthcare, adherence, self-integration, problem

solving, social support, and taking action.

2.4.1 Skills

Self-management skills requires both a better understanding of kidney disease and

confidence to take steps to manage the disease. Confidence is one of the important skills

in self-management of CKD. Three recent studies of CKD self-management have

examined people’s confidence through self-efficacy (Joboshi & Oka, 2016; Kazawa &

Moriyama, 2013; Lin, Tsai, Lin, Hwang, & Chen, 2013). The main focus of using self-

efficacy in these studies was to enhance participants’ confidence in improving their

lifestyle, such as maintaining a healthy weight and BP. When people have confidence in

their ability to achieve goals, they are more likely to maintain their lifestyle to manage

CKD (Kazawa & Moriyama, 2013). Education therefore can assist the improvement of

self-efficacy (confidence).

Knowledge in CKD refers to information about kidney disease, treatment options,

medications, diet, and lifestyle modifications. Previous research indicates that in earlier

stages CKD, prior to starting KRT, people have a lack of understanding of CKD and its

treatment (Finkelstein et al., 2008; Wright, Wallston, Elasy, Ikizler, & Cavanaugh, 2011).

For example, Finkelstein et al. (2008) measured perceived knowledge among people with

CKD stages 3–5 (n = 676) and found that more than a third (35%) of participants reported

that they had very limited or no understanding of their CKD and their treatment options.

Another study of 399 patients with CKD, all of whom were pre-dialysis, found that more

30 Chapter 2: Literature review


than half reported having little or no knowledge related to medications that helped the

kidneys (72%), medications that hurt the kidneys (63%), foods they should avoid when

their kidney function was low (61%), symptoms of CKD (61%), and the functions of the

kidney (51%) (Wright Nunes et al., 2011).

Studies have also shown that people with CKD want and need more CKD-specific

knowledge to support their self-management behaviours (Costantini et al., 2008; Havas,

Douglas, & Bonner, 2017; Lewis, Stabler, & Welch, 2010). Thus, improving people’s

kidney disease-related knowledge is important for early symptoms, taking prescribed

medications, and adhering to other management strategies. Patient education has been

shown to be extremely important in improving CKD knowledge in five recent systematic

reviews in CKD self-management (Bonner et al., 2014; Lee et al., 2016; Lin et al., 2017;

Lopez-Vargas et al., 2016; Welch et al., 2014). A more detailed examination of these

systematic reviews occurs in section 2.5.

In conclusion, previous research has shown that people with higher self-efficacy and

adequate kidney knowledge have better self-management of adherence to medication

regimens, partnership in health care, open communication, and kidney function compared

to those with lower self-efficacy and inadequate kidney knowledge (Curtin et al., 2008;

Devraj et al., 2015). Increased CKD self-management skills requires both a better

understanding of kidney disease and confidence to manage the disease, which in turn,

may prevent further deterioration of kidney function, and also to maintain their overall

health and well-being.

2.4.2 Components of Chronic Kidney Disease Self-Management

Seminal research in CKD have indicated that the required components to contribute to the

success in self-managing kidney disease. The components include communication,

Chapter 2: Literature review 31


partnership in healthcare and adherence have been identified in the initial research in

ESKD for those receiving dialysis (Curtin, Mapes, Schatell, & Burrows-Hudson, 2005).

First, communication is a respectful, two-way, meaningful conversation between patients

and healthcare providers (Curtin et al., 2005). Several studies have examined

communication in CKD (Lederer et al., 2015; Walker et al., 2017; Washington,

Zimmerman, & Browne, 2016). These studies have found that there are minimal

discussions of CKD. For instance, Lederer et al. (2015) in a study conducted in the U.S.

(n = 32) found that 38% of participants relied on their medical practitioners to provide

kidney disease information. This finding highlights that participants perceived their role

as a listener, a passive partner in the communication process. By being passive, CKD

knowledge and understanding of medical practitioners’ explanations may not improve

(Lederer et al., 2015). Thus, effective communication between patients and healthcare

providers is crucial to help patients with self-management activities such as home BP

monitoring, weight management, and dietary changes (Lederer et al., 2015; Lopez‐Vargas

et al., 2014) to slow the disease progression and improve HRQoL.

Second, using partnership in healthcare was reported in a number of studies of CKD self-

management (Byrne, Khunti, Stone, Farooqi, & Carr, 2011; Choi & Lee, 2012; Kazawa

& Moriyama, 2013; Walker, Marshall, & Polaschek, 2013; Williams, Manias, Walker, &

Gorelik, 2012). In these studies, the main focus of partnership is on building a good

relationship between patients and healthcare providers. Thereby, patients can share their

experiences and concerns with healthcare providers. In turn, healthcare providers

encourage and support patients to enhance their engagement in daily activities to manage

their disease. Lifestyle modifications of diet (avoiding added salt, eating high salt foods,

avoid high-fat food), taking regular physical activity, limiting alcohol consumption,

32 Chapter 2: Literature review


controlling body weight, and cessation of smoking are all important daily activities (see

also Chapter 1, section 1.2.4). Previous research in CKD self-management integrates

lifestyle modifications as part of various interventions. To avoid repetition, this research

is reviewed in the following section.

Third, adherence is important to CKD self-management, as for other chronic disease

previously discussed in section 2.3.2. However, adherence, particularly medication

adherence, remains a challenge in CKD with some studies suggesting the prevalence of

low adherence to prescribed medications is 30% or higher (Burnier, Pruijm, Wuerzner, &

Santschi, 2015; Sontakke, Budania, Bajait, Jaiswal, & Pimpalkhute, 2015). In addition, a

recent narrative review indicates that levels of adherence to diet, medication, and

treatment ranges from 20% to 70% (Beto, Schury, & Bansal, 2016). In Vietnam,

adherence with CKD treatment is unknown; however, it has been reported in people with

ESKD for those receiving haemodialysis. For example, 27% miss medications, 39%

struggle to adhere to renal diets, and 42% miss one or more haemodialysis sessions

(Duong et al., 2015). Similar to lifestyle modification, adherence is a common outcome in

CKD self-management research, which is reviewed in the following section.

In addition, Lin et al. (2012) and Ong et al. (2013) have indicated other components also

needed in self-management in people with CKD. Lin et al. (2012) used Lorig and Holman

(2003) components of self-integration, problem solving, social support, and taking action.

Ong et al. (2013) described the components as food management, BP management, blood

results management, and medication management. Ong et al. (2013) is in fact describing

what daily activities need to be done, and these have already been examined above.

Self-integration in CKD self-management reflects a person’s ability to integrate treatment

regimens and daily activities to manage their disease (Lin et al., 2012). Previous studies

Chapter 2: Literature review 33


of CKD self-management integration have examined nutrition (i.e., label reading,

identification of food containing salt or protein) (Campbell, Ash, & Bauer, 2008; Chen et

al., 2011; Kazawa & Moriyama, 2013), lifestyle modifications (Chen et al., 2011; Joboshi

& Oka, 2016; Kazawa & Moriyama, 2013), self-monitoring (Kazawa & Moriyama, 2013;

Lin et al., 2013), and making efforts to adjust to living with CKD (Blakeman et al., 2014).

The main focus in these studies is providing self-management education to enhance

participants’ integration to learn to maintain lifestyle modifications. In these studies,

participants have integrated monitoring their BP at home, physical activity and cooking

healthy meals. Thereby, participants’ integration in daily lifestyle which leads to their

decision to take action is discussed below.

Problem-solving in CKD self-management is the ability to seek a variety of resources and

actively learn knowledge of CKD in order to manage their kidney disease (Lin et al.,

2012). Several CKD self-management studies have used problem-solving skills to assist

patients (Blakeman et al., 2014; Joboshi & Oka, 2016; Lin et al., 2013; Teng, Yen, Fetzer,

Sung, & Hung, 2013; Williams et al., 2012). In these studies, problem-solving was part of

the patient education to assist patients to select appropriate food, remember to take

medication, or list ways of overcoming their problems to change their behaviour to

manage their disease. For example, Lin et al. (2013) in a study conducted in Taiwan

involving those with early stages of CKD (n = 37), participants were instructed to identify

possible problems in their daily activities, such as the overconsumption of high-fat foods

and salty foods, and how it impacted on their kidney function. The problems were then

discussed during the education program, and participants developed skills/strategies to

use to solve problems (Lin et al., 2013).

34 Chapter 2: Literature review


Social support is also important in CKD self-management. For example, Ibrahim et al.

(2015) in study conducted in Malaysia (N = 200) examined the influence of social support

on HRQoL, finding that higher social support was associated with improved medication

adherence, reduced hospitalisations, and a better HRQoL. Self-management education

may also be important for family members of those with CKD.

Taking action is when people believe in their capacity for self-managing, and they start

setting realistic goals for themselves and developing strategies to achieve their goals.

Taking action has been previously studied in CKD self-management (Byrne et al., 2011;

Joboshi & Oka, 2016; Kazawa & Moriyama, 2013; Lin et al., 2013). In these studies,

goals were typically about controlling BP and maintaining lifestyle modifications, and the

provision of education helped with developing an action plan. Taking action is based on

self-efficacy theory, which will be discussed in Chapter 3.

In summary, the literature shows that the skills and required components of self-

management have been used in the context of CKD to slow the progression of the disease

and to contribute to better health outcomes. What follows is a critique of the CKD self-

management research.

2.5 Chronic Kidney Disease Self-Management Research

This section critically appraises exisiting systematic reviews of CKD self-management

research. It then identifies the gaps in CKD self-management research.

2.5.1 Critical Appraised of Chronic Kidney Disease Self-Management Systematic

Reviews

Normally a systematic review is needed to search for existing studies in the substantive

area however as two existing systematice reviews had already been found (Bonner et al.,

Chapter 2: Literature review 35


2014; Welch et al., 2014), a search was performed to find if there had been any other

systematic reviews of CKD self-management studies. First MEDLINE, CINAHL,

ScienceDirect, ProQuest, and EbscoHost databases were searched by using the keywords

‘self-management’; ‘education’; ‘intervention’; ‘programme’; ‘chronic kidney disease’;

‘systematic review’; ‘meta-analysis’; ‘literature review’ for the period 2010−2017 in

English or Vietnamese language. A PRISMA flow diagram is provided as Figure 2.1.

36 Chapter 2: Literature review


Identification Records identified through database
searching (n = 2,164)
- MEDLINE (n = 75)
- CINAHL (n = 776)
- ScienceDirect (n = 1,176) Additional records identified
- ProQuest (n = 35) through other sources
- EbscoHost (n = 102) (n = 1)

Records after duplicates removed


(n = 630)
Screening

Records screened Records excluded


(n = 1,535) (n = 1,530)
Eligibility

Full-text Full-text
systematic reviews systematic reviews
assessed for eligibility excluded
(n = 5) (n = 0)
Included

Systematic reviews
included in quantitative
synthesis
(n = 5)

Figure 2.1. PRISMA flow diagram of included systematic reviews.

Chapter 2: Literature review 37


The search found five recent systematic reviews of quantitative studies (Bonner et al.,

2014; Lee et al., 2016; Lin et al., 2017; Lopez-Vargas et al., 2016; Welch et al., 2014).

Table 2.1 summarises the key findings of the systematic reviews. Two systematic reviews

included studies only in the pre-dialysis stages of CKD (i.e., stages 1–4), published in

English regardless of quantitative design (Bonner et al., 2014; Welch et al., 2014). Both

systematic reviews identified similar studies of which five were randomised controlled

trials (RCTs) (Byrne et al., 2011; Campbell et al., 2008; Chen et al., 2011; Flesher et al.,

2011; Williams et al., 2012). The other three systematic reviews (Lee et al., 2016; Lin et

al., 2017; Lopez-Vargas et al., 2016) included only RCTs of CKD self-management

interventions in either pre-dialysis patients or in those already receiving dialysis. Lee et

al. (2016) included two RCTs involving pre-dialysis patients (Campbell et al., 2008; Chen

et al., 2011), both of which were also reported by Bonner et al. (2014) and Welch et al.

(2014) in their systematic reviews. Lopez-Vargas et al. (2016) included 11 RCTs,

although only six were relevant to this thesis (Campbell et al., 2008; Chen et al., 2011;

Flesher et al., 2011; Paes-Barreto et al., 2013; Teng et al., 2013; Williams et al., 2012).

However, of these six studies, four had already been included in the other systematic

reviews (Bonner et al., 2014; Welch et al., 2014), leaving only two RCTs relevant to this

thesis (Paes-Barreto et al., 2013; Teng et al., 2013). The fifth systematic review (Lin et

al., 2017) included two pre-dialysis studies, of which one was published in Chinese,

leaving only Blakeman et al. (2014) suitable for inclusion in this literature review.

Additional search of included studies in the five systematic reviews was performed in

Google Scholar and the Queensland University of Technology library to obtain the

articles in full texts. From these five systematic reviews involving 1,011 patients with

CKD who were not on dialysis, eight RCTs examined CKD self-management

interventions (Blakeman et al., 2014; Byrne et al., 2011; Campbell et al., 2008; Chen et

38 Chapter 2: Literature review


al., 2011; Flesher et al., 2011; Paes-Barreto et al., 2013; Teng et al., 2013; Williams et al.,

2012). Since the systematic reviews have been published there has been one further RCT

(Joboshi & Oka, 2016), included in Table 2.1. What follows is a synthesis of the nine

previous RCTs that have reported on a CKD self-management intervention with a total of

1,076 participants.

Chapter 2: Literature review 39


Table 2.1. Systematic Reviews of Chronic Kidney Disease Self-Management Research
Systematic Years of Number of Study design Country Theoretical Intervention Outcomes Gaps in research
reviews and included studies RCT or Non (number) frameworks content/format/ assessed
new study studies (total RCT delivery/length
and year participants (number of
of new [n]) studies
study involving CKD
stages 3–5
participants
[non-dialysis])
Bonner et al. 2003 – 5 (n = 274)  3 RCTs  Australia  American  SM education on kidney  CKD  Lack of theory-
(2014) 2013 (stages 3–5)  Canada Dietetic knowledge, nutrition, knowledge base to inform
 2 non RCTs  Taiwan (2) Association cooking, exercise  SM the intervention
(stages 3–4)  Korea framework  Face-to-face, telephone  HRQoL  Varied strategies
 Nurses, medical  Nutritional to improve SM
practitioners, dietitian, status  Inconsistency in
cook educator, certified  eGFR the delivery,
exercise physiologist  BP duration, format
 12 weeks to 12 months  Cholesterol of the SM
 Urinary sodium education
 Urinary  Varied
protein assessment of
outcomes
Welch et al. 2010 – 7 (n = 376)  3 RCTs  Australia  Social cognitive  SM education on kidney  CKD  Theories were
(2014) 2013 (stages 1–4)  New Zealand theory knowledge, lifestyle, knowledge used in 4 studies
 4 non RCTs  Canada  Self-regulation exercise  SM to inform the
(stages 2–4)  U.K. theory  Face-to-face, telephone,  Self-efficacy intervention
 Taiwan  Health belief home visit, email  HRQoL  Varied strategies
 Korea model  Nurses, medical  Exercise to improve SM
 Japan practitioners, dietitian,  Nutritional  Inconsistency in
cook educator, certified status the delivery,
exercise physiologist  Medication duration, format

Chapter 2: Literature review 41


Systematic Years of Number of Study design Country Theoretical Intervention Outcomes Gaps in research
reviews and included studies RCT or Non (number) frameworks content/format/ assessed
new study studies (total RCT delivery/length
and year participants (number of
of new [n]) studies
study involving CKD
stages 3–5
participants
[non-dialysis])
 8 weeks to 12 months adherence of the SM
 eGFR education
 Creatinine  Varied
 BP assessment of
 Cholesterol outcomes
 Biochemistry  Flaws in
 Hb reporting
 HbA1c
Lee et al. 2002 – 7 (n = 423)  2 RCTs  Australia  Cognitive  SM education on kidney  eGFR  Theories were
(2016) 2014 (stages 3–5)  Brazil behavioural knowledge, nutrition,  BMI used in 3 studies
 1 non RCT  Taiwan (4) therapy skills to better self-  HRQoL to inform the
(stages 3–4)  Korea  Self-efficacy management intervention
 4 RCTs theory  Face-to-face, telephone  Varied strategies
(ESKD-  Nurses, medical to improve SM
dialysis) practitioners, dietitian  Limited outcome
 8 weeks to 12 months measures
Lin et al. 2003 – 18  18 RCTs (only  U.K. (5)  Cognitive  SM education on  Medical  Lack of theory-
(2017) 2017 (n = 1,647) 2 included  Brazil behavioural medical, role, and management base to inform
CKD non-  Iran therapy emotional management,  Self-efficacy the intervention
dialysis  India  Self-efficacy and quality of life  Anxiety in a number of
participants  Taiwan (4) theory  Face-to-face, telephone,  Depression studies
[stages 1–4]; 1  Hong Kong (2)  Four-Cs interactive website  HRQoL  Varied strategies
article in  China (4) model of  Delivery was not to improve SM
English and 1 chronic care reported  Limited

42 Chapter 2: Literature review


Systematic Years of Number of Study design Country Theoretical Intervention Outcomes Gaps in research
reviews and included studies RCT or Non (number) frameworks content/format/ assessed
new study studies (total RCT delivery/length
and year participants (number of
of new [n]) studies
study involving CKD
stages 3–5
participants
[non-dialysis])
in Chinese,  Health belief  4 weeks to 6 months outcomes
therefore only model assessed
1 RCT
included)
Lopez- 1996 – 26  11 RCTs  Australia (3)  Social cognitive  Education on kidney  CKD  Lack of theory-
Vargas et al. 2015 (n = 5,403) (stages 2–5,  Canada (4) theory knowledge, nutrition, knowledge base to inform
(2016) although only  Brazil  Self-regulation exercise, lifestyle  SM the intervention
6 studies  New Zealand theory modification, dietary  Self-efficacy in a number of
focused on  The  Health belief skills, skills to better  HRQoL studies
stages 3–5) Netherlands model SM  Medication  Varied strategies
 15 non RCTs  Sweden  Trans-  Face-to-face, telephone, adherence to improve SM
(stages 1–5)  Spain (3) theoretical home visit, email  Hospital-  Inconsistency in
 U.S. (2) model  Nurses, medical isations the delivery,
 Korea practitioners, dietitian  Exercise duration, format
 Japan  8 weeks to 24 months  Diet of the SM
education
 China modification
 eGFR  Varied
 Taiwan (7)
 Creatinine assessment of
 Biochemistry outcomes
 Glucose
 BP
 Weight
 BMI

Chapter 2: Literature review 43


Systematic Years of Number of Study design Country Theoretical Intervention Outcomes Gaps in research
reviews and included studies RCT or Non (number) frameworks content/format/ assessed
new study studies (total RCT delivery/length
and year participants (number of
of new [n]) studies
study involving CKD
stages 3–5
participants
[non-dialysis])
Joboshi and 2009 – − RCT with 1:1  Japan  Self-efficacy  SM education on  SM  Theories used but
Oka (2016) 2011 allocation into 2  Health treatment plan, lifestyle,  Self-efficacy not clearly
groups (n = 65) promotion skills for better SM,  BP explained why 3
model setting goals to foster  Creatinine theories were
 An interaction self-efficacy  eGFR needed to
model of  Face-to-face, telephone,  Serum improve SM
client health email, outpatient visit potassium  Limited
behaviour  Nurses  Hb outcomes
 12 weeks assessed
 Lack of using
standardised
instruments
 Example
instrument items
not provided
Abbreviation: CKD, chronic kidney disease; RCT, Randomised controlled trial; non RCT, Non-randomised controlled trial; SM, Self-management; BP, Blood pressure;
HRQoL, Health-related quality of life; eGFR, estimated glomerular filtration rate; BMI, Body mass index; Hb, Haemoglobin; U.K., United Kingdom; U.S., United States.

44 Chapter 2: Literature review


2.5.2 Summary of Included Randomised Controlled Trials in Chronic Kidney Disease

Self-Management

Of the nine studies, two were conducted in Australia (Campbell et al., 2008; Williams et

al., 2012), two in the U.K. (Blakeman et al., 2014; Byrne et al., 2011), two in Taiwan

(Chen et al., 2011; Teng et al., 2013), and one each in Canada (Flesher et al., 2011),

Brazil (Paes-Barreto et al., 2013) and Japan (Joboshi & Oka, 2016). Five of the studies

used a theory to inform the development of the intervention. These were: Social cognitive

theory (SCT) (Byrne et al., 2011), the Health belief model (Williams et al., 2012),

American Dietetic Association framework (Campbell et al., 2008), Transtheoretical

model (Teng et al., 2013), and the fifth study by Joboshi and Oka (2016) used a

combination of self-efficacy, an interaction model of client health behaviour, and a health

promotion model, although it was unclear how these three theories conceptually linked to

the study. Of these, only SCT was used in more than one study (Byrne et al., 2011;

Joboshi & Oka, 2016) although it was unclear how this theory informed the intervention.

The remaining four studies (Blakeman et al., 2014; Chen et al., 2011; Flesher et al., 2011;

Paes-Barreto et al., 2013) did not report using a theoretical framework to guide the

research.

As the interventions across the nine studies differed in terms of CKD content area,

format, delivery, and duration of the intervention, as well as outcomes measured, these

will be examined in more detail below.

Content of self-management interventions

The content of the interventions across the nine studies varied considerably. The content

included education about kidney knowledge (Blakeman et al., 2014; Byrne et al., 2011;

Chapter 2: Literature review 45


Chen et al., 2011), nutrition and a healthy diet (Campbell et al., 2008; Chen et al., 2011;

Flesher et al., 2011), physical activity (Flesher et al., 2011), medication (Blakeman et al.,

2014; Byrne et al., 2011; Chen et al., 2011; Williams et al., 2012), ways to measure and

control BP (Byrne et al., 2011; Williams et al., 2012), lifestyle modifications (Flesher et

al., 2011; Joboshi & Oka, 2016), and planning and self-management techniques to

achieve goals (Joboshi & Oka, 2016).

Format of self-management interventions

The format of the self-management interventions also varied in a number of ways. Face-

to-face education was the most frequently used format (Byrne et al., 2011; Campbell et

al., 2008; Chen et al., 2011; Flesher et al., 2011; Joboshi & Oka, 2016; Paes-Barreto et

al., 2013; Teng et al., 2013). Other formats used were telephone support (Blakeman et al.,

2014; Campbell et al., 2008; Chen et al., 2011; Paes-Barreto et al., 2013; Teng et al.,

2013), group discussion (Byrne et al., 2011; Chen et al., 2011), home visit (Williams et

al., 2012), clinic visit (Joboshi & Oka, 2016; Teng et al., 2013), emails (Joboshi & Oka,

2016), and interactive website (Blakeman et al., 2014). Williams et al. (2012) also

reported the use of Digital Versatile Disc (DVD) to enhance people’s confidence in

taking medications by focusing on their beliefs that when they took medication, they

would be able to control their BP and improve their health. Only Byrne et al. (2011)

reported that a friend or relative could also attend for support.

The majority of studies used written resources during the education intervention. The

resources were learning modules (Byrne et al., 2011), kidney information guidebook

(Blakeman et al., 2014), CKD cookbook (Flesher et al., 2011) or recipes to replace salt

(Paes-Barreto et al., 2013), and a BP booklet (Williams et al., 2012). However, the

provision of written education resources was not reported in three studies (Campbell et

46 Chapter 2: Literature review


al., 2008; Chen et al., 2011; Joboshi & Oka, 2016). By providing easily useable resources

such as printed materials, patients can review the material at home or they can read and

discuss it together with their family, which may in turn improve the effect of the CKD

self-management program.

Delivery of self-management interventions

Across the studies, the interventions were mostly delivered by nurses (Byrne et al., 2011;

Chen et al., 2011; Flesher et al., 2011; Joboshi & Oka, 2016; Williams et al., 2012). Other

studies used dietitians (Campbell et al., 2008; Chen et al., 2011; Flesher et al., 2011;

Paes-Barreto et al., 2013), cook educator (Flesher et al., 2011), staff and students at a

university (Blakeman et al., 2014), peers and volunteers (Chen et al., 2011), or trained

research assistants (Teng et al., 2013). In the clinical setting, these studies indicate that

nurses have a vital role in providing self-management education.

Duration of self-management interventions

The duration of the interventions in studies varied from 3 months (Campbell et al., 2008;

Joboshi & Oka, 2016), 5 months (Paes-Barreto et al., 2013), 6 months (Blakeman et al.,

2014; Byrne et al., 2011), to 12 months (Chen et al., 2011; Flesher et al., 2011; Teng et

al., 2013; Williams et al., 2012). Due to the heterogeneity of the studies, it is not possible

to identify the ideal duration of a CKD self-management education program. One study

reported that the investigators experienced difficulty with recruitment and retention of

people with CKD during a 6-month follow-up (Byrne et al., 2011).

In conclusion, previous research shows that self-management interventions vary widely,

and there is no consistency in the program content, format, and duration.

Chapter 2: Literature review 47


Outcomes assessed of self-management interventions

The effectiveness of CKD self-management interventions has been assessed in terms of

patient-reported and clinical outcomes, which are examined below.

Patient-reported outcomes

Knowledge

Knowledge was the most frequently assessed outcome, although only in three of the

studies (Blakeman et al., 2014; Chen et al., 2011; Teng et al., 2013). Chen et al. (2011)

measured knowledge and found that patients received the intervention had improved their

knowledge regarding kidney function, diet, treatment, and medication compared with the

control group when the study completed at 12 months. Knowledge was assessed at only

two time points (baseline and 12 months) although overall effect change of the

intervention on improved knowledge was not reported. In addition, it is unknown whether

knowledge improved during the first few weeks or months or only at the end of the study.

Teng et al. (2013) assessed knowledge at five time points—baseline, 3, 6, 9 and 12

months—using the Renal Protection Knowledge (RPK) checklist, which measures

participants’ knowledge of renal function protection, knowledge of using Chinese herbs

related to renal function, and CKD diet (Yen, Huang, & Teng, 2008). However, the

checklist is not available in English. The study measured knowledge at three repeated

time points at months 6, 9 and 12 when the study completed. The results indicated that

participants’ knowledge had improved over time. However, it is unclear how much

improvement between groups as overall knowledge scores of the two groups were

presented in a graph and no accurate numbers such as effect size of the overall

48 Chapter 2: Literature review


intervention on knowledge, mean scores, and standard deviation for each group at each

time point were reported in the publication.

The third study measured medication knowledge at 6 months by using the Medication

Knowledge and Medication Motivation subscales from the Modified Morisky Medication

Adherence Scale (Blakeman et al., 2014). This instrument was developed by Morisky,

Green, and Levine (1986) to test knowledge of hypertension medication. Blakeman et al.

(2014) found that medication knowledge of participants was not different between groups

at 6 months (study completion) in the intervention group versus control group. This result

may be due to the limitations of the intervention format and delivery as previously

discussed.

Participant knowledge was not measured in the other six studies (Byrne et al., 2011;

Campbell et al., 2008; Flesher et al., 2011; Joboshi & Oka, 2016; Paes-Barreto et al.,

2013; Williams et al., 2012). Lack of measuring knowledge in these studies may be due

to different study designs, as two studies tested the feasibility of the intervention (Byrne

et al., 2011; Williams et al., 2012), while the other four studies focused on different

intervention topics. Knowledge is an important skill in self-management behaviour as

previously argued in this chapter. Measuring knowledge is therefore crucial to assessing

how much people understand about their kidney disease; however, having sufficient

understanding does not indicate that a person can or will put this knowledge into practice.

Hence, measuring other outcomes such as self-efficacy and self-management behaviour at

the same time may help to explain that acquisition of disease-specific knowledge

improves confidence and that knowledge has been transferred into routine CKD self-

management behaviours.

Chapter 2: Literature review 49


Self-efficacy

Self-efficacy, or confidence in the ability to do something, is one of the most important

skills in CKD self-management. Byrne et al. (2011) described evaluating self-efficacy

although no instrument was identified, and neither were any results reported. Only

Joboshi and Oka (2016) measured self-efficacy as a primary outcome. This study

measured participants’ self-efficacy at baseline and at 3 months when the study ended.

Efforts to foster self-efficacy were included in the study, such as encouragement from

nurses to clarify lifestyle issues and determine self-management skills needed for a

healthier lifestyle. In addition, this intervention group was provided with further support

through outpatient visits, telephone calls, or emails. Joboshi and Oka (2016) found that

there was an increase in self-efficacy in the intervention group as they have improved

confidence in taking healthy actions to self-maintain health compared to the control

group. The confidence that participants gained from the intervention is crucial to improve

their lifestyle practice, which helps to self-manage CKD and prevent further deterioration

of kidney function. However, the self-efficacy instrument used in this study had been

developed by Kim, Shimada, and Sakano (1996) and was in Japanese. Joboshi and Oka

(2016) did not provide information regarding how this instrument assessed self-efficacy.

In the remaining seven studies (Blakeman et al., 2014; Campbell et al., 2008; Chen et al.,

2011; Flesher et al., 2011; Paes-Barreto et al., 2013; Teng et al., 2013; Williams et al.,

2012), self-efficacy was not an outcome. Self-efficacy is an important aspect of

improving self-management behaviour that will be explored further in the next chapter.

Self-management

Improvement in CKD self-management was the aim of all nine studies although

surprisingly it was measured in only six studies, using six different instruments. Flesher et

50 Chapter 2: Literature review


al. (2011) used the chronic disease self-management instrument developed by Stanford

School of Medicine Patient Education Research Centre to assess self-management at

baseline, 6 months, and 12 months. However, only participants’ answers at baseline and

12 months were used to compare and report for the effect of the intervention program.

Flesher et al. (2011) found that participants who received the self-management program

showed improvement in their exercise frequency, concern over their health condition, and

frequency of visits to healthcare providers and hospitalisation; however, unclear in

reporting how much improvement in the intervention compared to the control group were

provided in the publication.

Williams et al. (2012) assessed participants’ self-management by using a therapeutic level

of medication adherence instrument. Change in medication adherence was measured

using the four Item Morisky Medication Adherence Scale (Morisky et al., 1986),

however, there is an inconsistency in their findings regarding medication adherence.

Participants in both groups reported that they did not have any problem remembering to

take prescribed medications, but at the same time they forgot to take medication

(Williams et al., 2012). Although these authors found that an average of 87% of the

intervention group adhered in recording their BP daily; however, no result from the

control group was reported. Williams et al. (2012) also found that participants in the

intervention group (30.6%) did not routinely check their blood pressure although they

reported that they already owned self-monitoring blood pressure machines. These

findings indicate the important of measuring self-management behaviour and knowledge

at the same time to have better demonstration of whether participants’ knowledge is

transferred into daily activities to manage CKD.

Chapter 2: Literature review 51


The Health Promoting Lifestyle Profile-II Chinese version (HPLP-IIC) instrument was

used to measure diet and exercise self-management behaviours in the study by Teng et al.

(2013). This study found that physical activity in the intervention group had improved

over time, compared to the control group. This study also found a large increased (60%)

in being action or maintenance stage of dietary behaviour in the intervention group,

whereas only a small increased (13%) was found in the control group. This finding

highlights that participants who received the education have begun adhering to a healthy

diet to self-manage their kidney disease and maintain health such as they had steeper

decline in nutrition scores, although no difference between groups was found.

Paes-Barreto et al. (2013) measured participants’ self-management through a checklist of

protein intake using a 24-hour food method at four visit time points [first visit (4–6

weeks), second visit (8–10 weeks), third visit (12–14 weeks), and fourth visit (16–20

weeks)]. The study found that participants who received the intervention had decreased

protein intake values between baseline and fourth visit (Paes-Barreto et al., 2013). This

finding indicates that those received the intervention have turned their understanding into

action to reduce the consumption of protein to manage CKD.

Blakeman et al. (2014) measured CKD self-management as a secondary outcome using

the Summary of Diabetes Self-Care Activities (SDSCA) instrument, which was

developed to measure self-management behaviour in people with type 2 diabetes

(Toobert, Hampson, & Glasgow, 2000). Self-management was assessed at baseline and at

the study end (6 months later). Blakeman et al. (2014) found that participants in the

intervention group showed an improvement in self-management activities compared to

the control group, although no theory was used to demonstrate the intervention effects on

improving self-management in the intervention group.

52 Chapter 2: Literature review


Joboshi and Oka (2016) measured CKD self-management through an instrument the

authors created, based on the CKD Medical Practice Guide of the Japanese Society of

Nephrology. The instrument, written in Japanese, had been validated prior to this study.

The instrument assessed medication adherence, BP, body weight, test data management,

drinking and smoking, nutrition, exercise, and infection prevention (Joboshi & Oka,

2016). Self-management was measured at baseline and at the completion of the study (12

weeks later), and found that participants who received the self-management intervention

had improved self-management behaviour compared to those who did not. The result has

been demonstrated that the intervention is effective in improving participants’ self-

management behaviour as those received the self-management support indicated more

confidence in taking action to achieve their goals or adjust their behaviours to manage

CKD.

Participants’ self-management was not measured in the remaining three studies (Byrne et

al., 2011; Campbell et al., 2008; Chen et al., 2011), although all studies aimed to examine

the impact of self-management program on people with CKD.

Health-related quality of life

Improvement in HRQoL is one indicator of the beneficial effects of improved self-

management, although HRQoL was only assessed in two studies (Blakeman et al., 2014;

Campbell et al., 2008). Blakeman et al. (2014) used the EuroQoL to measure HRQoL in

both groups, finding that the intervention group showed improved in HRQoL, compared

to the control group. Although unclear in reporting of the finding was found regarding the

effect change of the overall intervention on HRQoL, which therefore limited the ability to

explain the effects of the intervention and compare with other studies. Campbell et al.

(2008) used the Kidney Disease Quality of Life Short Form version 1.3 (KDQoL-SF

Chapter 2: Literature review 53


v1.3) found that compared to the control group, the intervention group showed improved

symptoms, cognitive functioning, and vitality. However, participants’ health-related

behaviours and knowledge related to information given in the intervention program were

not assessed in the study by Campbell et al. (2008), which may be limited the

demonstration of how the intervention improve their HRQoL. The other seven studies

(Byrne et al., 2011; Chen et al., 2011; Flesher et al., 2011; Joboshi & Oka, 2016; Paes-

Barreto et al., 2013; Teng et al., 2013; Williams et al., 2012) did not assess this outcome.

Clinical outcomes

The purpose of CKD self-management is to assist people to have better health and to slow

the progression of CKD. The most frequently assessed outcomes have been kidney

function (eGFR) and BP control. Other renal clinical tests and health-related outcomes

such as potassium, cholesterol, haemoglobin, urinary protein, urinary sodium, body

weight, and body mass index (BMI) were less frequently assessed. Smoking status was

not measured in any of the nine studies.

Evaluation of eGFR was reported in five studies (Chen et al., 2011; Flesher et al., 2011;

Joboshi & Oka, 2016; Paes-Barreto et al., 2013; Williams et al., 2012); however, there

were mixed findings across the studies. Chen et al. (2011) found that eGFR had improved

over time in the intervention group, compared to those in the control group. By contrast,

eGFR of participants in the intervention group did not improve compared to those who in

the control group in the other three studies (Flesher et al., 2011; Joboshi & Oka, 2016;

Paes-Barreto et al., 2013). One further study, Williams et al. (2012), did attempt to

measure eGFR as an outcome, but due to missing data they were unable to report this

result. In two studies, Campbell et al. (2008) and Teng et al. (2013), eGFR was only

measured at baseline and was not a study outcome. The remaining two studies did not

54 Chapter 2: Literature review


measure eGFR (Blakeman et al., 2014; Byrne et al., 2011). As self-management programs

are designed to assist people to improve or maintain their kidney function, assessing

whether eGFR changes overtime is a useful outcome; however, as change in eGFR is

likely to take a long time (months or years) and could also be affected by other factors

(e.g., cause of CKD, comorbid diseases, etc.), a long study duration over serveral years is

required.

Blood pressure control (BP) was another clinical outcome measured in four studies

(Blakeman et al., 2014; Flesher et al., 2011; Joboshi & Oka, 2016; Williams et al., 2012);

however, equivocal findings of BP were found. Only Blakeman et al. (2014) found an

improved in BP at the end of the study between the intervention and control groups,

whereas other studies did not (Flesher et al., 2011; Joboshi & Oka, 2016; Williams et al.,

2012). Three studies did not measure BP (Byrne et al., 2011; Campbell et al., 2008; Chen

et al., 2011). Byrne et al. (2011) did attempt to measure BP; however, there were no

results provided in the publication.

Other outcomes such as serum creatinine, potassium, cholesterol, haemoglobin, urinary

protein, urinary sodium, body weight, and BMI varied across the nine studies. Serum

creatinine was reported in four studies, and no difference was found in Joboshi and Oka

(2016), Chen et al. (2011), and Paes-Barreto et al. (2013), while Williams et al. (2012)

found improvement in the intervention group but they were unable to compare to the

control group. Joboshi and Oka (2016) and Paes-Barreto et al. (2013) also reported

unchanged in serum creatinine between the intervention and control groups at the end of

their respective studies. Cholesterol, urinary protein, urinary sodium were measured by

Flesher et al. (2011), who found that only urinary sodium had changed between groups at

the study end. Potassium was measured in two studies (Joboshi & Oka, 2016; Paes-

Chapter 2: Literature review 55


Barreto et al., 2013), and no difference was detected in either study. Haemoglobin (Hb)

was only assessed by Joboshi and Oka (2016) who found no difference between groups.

Urea, glucose, phosphorus, albumin, body weight and BMI were assessed by Paes-

Barreto et al. (2013), and no differences between groups were found for any of these

outcomes. However, Paes-Barreto et al. (2013) found that at the fourth visit compared to

baseline, the intervention group had decreased in albumin, urea, body weight, and BMI.

The other two studies did not report any of these clinical outcomes in their respective

results (Blakeman et al., 2014; Byrne et al., 2011).

In conclusion, self-management education is to support people to understand kidney

disease and improve confidence in making behaviour change to manage their disease in

everyday life. Knowledge is an integral part of self-management as people need to

understand what CKD is, how to identify early symptoms, and how to take steps to

manage their disease. Knowledge and self-management behaviour are therefore important

outcomes and ought to be measured in behavioural studies. In addition, measuring self-

efficacy, HRQoL, and clinical outcomes such as BP control are also needed to evaluate

the effects of the self-management education on enhancing patients’ confidence in taking

actions to manage the disease and reduce the impacts of CKD on HRQoL and health

outcomes.

2.5.3 Gaps in Chronic Kidney Disease Self-Management Research

Even though there have been nine previous RCTs, there are several gaps in CKD self-

management research. First, no studies have been undertaken in Vietnam. Second, due to

the small number and heterogeneity of studies conducted thus far, further research

informed by behavioural theories is warranted to test whether self-management

interventions work in different contexts. Third, strategies to improve self-management

56 Chapter 2: Literature review


have varied according to content, format, delivery, and resources used. Fourth, there is

little consistency in the type of outcomes assessed. Self-management behaviour has been

measured using different instruments and culturally relevant instruments need to be used.

In addition, given the focus on improving self-management both patient-reported and

clinical outcomes ought to be measured. It seems obvious that, at a minimum, a person’s

knowledge of CKD and whether they believe they are self-managing should be primary

outcomes for this type of intervention study. Lastly, flaws in reporting were found, and

only three studies adhered to the CONSORT guidelines. Given these gaps, a study in

Vietnam where minimal CKD patient education is provided is clearly warranted.

2.6 Chapter Summary

Chronic kidney disease is a major problem globally and creates a number of impacts on

the physical, psychological and social aspects of a person’s life. Providing self-

management education is essential to assisting people to understand what CKD is, how to

identify early symptoms, and how to take steps to self-manage their disease. Effective

self-management behaviours are known to slow the progression of CKD and improve

people’s HRQoL although the findings from nine previous RCTs indicate a gap in

knowledge. These previous studies have: limitations with methodology; substantial

variations in the content, format, delivery, and duration of the intervention; measure a

variety of outcome using inconsistent methods so as to preclude a meta-analysis; and are

inconsistently report. In the next chapter, social cognitive theory (SCT) as the theoretical

framework to guide this study is described, and this is followed by a detailed description

of the three phases for this study in Chapter 4.

Chapter 2: Literature review 57


Chapter 3: Theoretical Framework

3.1 Introduction

There are a number of theories identified in the literature which have been used to explain

health behaviour, such as the Theory of Planned Behaviour (Ajzen, 1991), the

Transtheoretical Model (Prochaska, DiClemente, & Norcross, 1992), the Health Belief

Model (Pender, Murdaugh, & Parsons, 2015), and Social Cognitive Theory (SCT)

(Bandura, 1989). The Theory of Planned Behaviour is used to predict the occurrence of a

specific behaviour through four components such as attitude toward behaviour, subjective

norms, perceived behavioural control, and intention (Ahmad et al., 2014); however, the

gap between intensions and behaviour are difficult to classify (Munro, Lewin, Swart, &

Volmink, 2007; Rich, Brandes, Mullan, & Hagger, 2015). The Transtheoretical Model

explains how individuals make and internalise behaviour change through five stages;

namely the pre-contemplation, contemplation, preparation, action, and maintenance

stages (Cassidy, 1999; Prochaska et al., 1992). However, the Transtheoretical Model is

limited because it does not demonstrate how individuals change their behaviour and why

only few individuals succeed (Munro et al., 2007). The Health Belief Model consists of

six key constructs, perceived susceptibility, perceived severity, perceived benefits,

perceived barriers, cues to action, and self-efficacy, to explain how individuals change

their health behaviours (Sadeghi, Tol, Moradi, Baikpour, & Hossaini, 2015). This model

has similarities to SCT although it is unclear these constructs combine to explain

behaviour change (Munro et al., 2007). Among these theories, SCT provides the most

comprehensive understanding of why and how individuals change their health behaviour

Chapter 3: Theoretical framework 59


and the factors that influence them (McAlister, Perry, & Parcel, 2008; Munro et al.,

2007).

Social cognitive theory emphasises the interaction between people and their

environments, and their capacities for learning and adaptation to perform the desired

behaviour (Bandura, 2004b, 2012; McAlister et al., 2008). Behaviour is a result of

individual learning experiences within particular environmental situations and utilising

intellectual and physical capacities (Bandura, 2004b, 2012; McAlister et al., 2008). Thus,

an individual’s behaviour can be changed through new learning experiences, their

perception of the environment, and their motivation for the development of capacities

(McAlister et al., 2008).

Increasing self-efficacy is commonly seen as the most effective way of changing

individual behaviour (Bandura & Adams, 1977; Koopman-van den Berg & van der Bijl,

2001; Tsay, 2003; Wierdsma, van Zuilen, & van der Bijl, 2011; Wu et al., 2011).

Moreover, at least one additional contribution made by SCT, compared with other health

behavioural theories, is the use of four major sources of information to enhance

confidence (self-efficacy) in the process of changing behaviour (McAlister et al., 2008;

Rosenstock, Strecher, & Becker, 1988). Social cognitive theory also provides a structure

and processes to inform the development of an intervention that can improve the level of

self-efficacy in an individual (Lenz & Shortridge-Baggett, 2002; van de Laar & van der

Bijl, 2001). Hence, SCT is recognised as one of the most frequently used theories in

studying health behaviour in people with chronic disease (Dang, Deoisres,

Keeratiyutawong, & Baumann, 2013; Dao, 2012; Ha, Hu, Petrini, & McCoy, 2014; Wu et

al., 2007; Yoo, Kim, Jang, & You, 2011), including those with CKD (Balaga, 2012;

60 Chapter 3: Theoretical framework


Byrne et al., 2011; Kazawa & Moriyama, 2013; Tsay, 2003; Weng, Dai, Huang, &

Chiang, 2010; Wierdsma et al., 2011).

This chapter justifies the theoretical framework used to guide this study. First, SCT and

its components are explained. Second, existing research among people with CKD,

informed by SCT, is reviewed. Third, how SCT is a good fit with the context of Vietnam

is discussed.

3.2 Social Cognitive Theory

Social cognitive theory is based on the principles of social learning theory, which

explains that people learn certain behaviours from vicarious learning experiences, such as

imitation and recognition (Bandura, 1989, 1997, 2004b; Price & Archbold, 1995).

According to Bandura (1989, 1997, 2004b, 2012), human behaviour is understood as a

product of the interaction between personal factors (P), environmental factors (E), and the

attribution of the behaviour itself (B). Bandura terms this as triadic reciprocal causation

(see Figure 3.1). Personal factors are an individual’s attitudes, knowledge, and

expectations; environmental factors are social norms, access to community, and influence

on others; and behavioural factors are skills and practice (Bandura, 1989, 1997, 2004b,

2012). In addition, Bandura (1989) states that “people are both products and producers of

their environment” (p. 4). A change in one element will create an impact on other

elements, as shown in Figure 3.1. Thus, SCT attempts to explain individuals’ behaviour

and how this is influenced by the environment around them, as well as by their own

personal circumstances.

Chapter 3: Theoretical framework 61


Personal (P)

Behavioural (B) Environmental (E)

Figure 3.1. Triadic reciprocal causation (Bandura, 1989, 1997, 2004b, 2012).

Person and Behaviour

Personal factors and behaviour reflect the interaction between thought, affect, and action

(Bandura, 1989, 2004b). People’s thinking, beliefs, and feelings all affect their

behaviours (Bandura, 1986, 2004b). For instance, people think that they may not be able

to overcome difficult situations, so they do not feel competent to take action, while those

who judge themselves competent to successfully overcome challenges are more likely to

perform a new behaviour. In those with CKD, their thoughts may affect their behaviour,

for example, when they avoid doing exercise because they think they are unable to

perform it regularly. However, those who believe in their abilities to perform it could do

so regularly. Furthermore, not only people’s thoughts but also their physical and

psychological attributes affect behaviour (Bandura, 1989, 2004b). In other words,

individual characteristics, including age, gender, race, and health conditions can also

influence behaviour and quality of life.

Behaviour and Environment

The two-way interaction between behaviour and the environment is presented in the

construct of SCT (see Figure 3.1). Bandura (2004b) asserts that people’s behaviour can

alter environmental conditions and environmental conditions can alter behaviour.

Environmental factors provide a wide range of conditions that can have a reciprocal effect

62 Chapter 3: Theoretical framework


on people’s behaviour. For example, if individuals with CKD ought to exercise regularly,

they need a suitable environment that is conducive to do so. In Vietnam, exercise is more

commonly seen in urban areas than in rural areas. People often engage in exercise, often

tai chi, in the streets or nearby parks with their friends or relatives.

Environment and Person

The environment and the person also interact (Bandura, 1997). Environmental factors

such as temperature or rainfall could affect a person. For example, Bui et al. (2015)

reported that in Vietnam people are more likely to more exercise in the dry season than in

the wet season.

Since SCT was developed, Bandura and his colleagues have continued to develop this

theory further by explaining components that influence changing behaviour (see Figure

3.2). These components are person, behaviour, efficacy-expectations (self-efficacy) and

four information sources, outcome-expectations, and outcome. According to SCT,

providing sufficient and appropriate self-efficacy is a crucial way to influence human

behaviour, and by increasing self-efficacy, a person can be assisted to change certain

behaviours. The following section explains the components of SCT.

Chapter 3: Theoretical framework 63


Person Behaviour
Characteristics: age,  Start
 Energy Outcome
gender, race, education
 Frequently

Efficacy-expectations Outcome-expectation
 Difficulty  Physical
 Conviction  Social
 Generality  Self-evaluative

Information sources
 Performance accomplishment
 Vicarious experience
 Verbal persuasion
 Self-appraisal

Environment

Figure 3.2. Social cognitive theory (Bandura, 1977, 2002; Lenz & Shortridge-Baggett,
2002; Shortridge-Baggett & van der Bijl, 1996).

64 Chapter 3: Theoretical framework


3.2.1 Person, Behaviour, and Outcome

Person

A person is an individual, who they are, and their characteristics. These characteristics

can include age, gender, race, current relationship, education, employment status, and

health conditions (Bandura, 1989).

Behaviour

Behaviour are the sorts of actions (or activities) that a person does all of the time or most

of the time. Some of these behaviours could be described as good (or appropriate)

behaviours, such as healthy eating, exercise, weight control, smoking cessation (Tuot,

Plantinga, et al., 2013; Welch et al., 2014). Other behaviours which are not appropriate

are unhealthy behaviours, particularly when it comes to maintaining good health. These

behaviours could be, for example, drinking alcohol or smoking cigarettes (Kidney Health

Australia, 2015). In Vietnam, particularly in men, unhealthy behaviours are common,

such as smoking, consuming a lot of alcohol, having unhealthy diets, and being

physically inactive (Minh et al., 2009). These unhealthy behaviours could affect chronic

disease self-management, including CKD.

Outcome

Outcome is a result from the changed behaviour. Lenz and Shortridge-Baggett (2002)

suggest that when individuals are motivated to perform certain behaviours, it is often

related to the belief that they will produce better outcomes. When a person achieves a

positive health outcome that in turn affects the environment (i.e., family around them),

the person is convinced to keep up that behaviour. For example, an individual with CKD

Chapter 3: Theoretical framework 65


adheres to a diet plan to reduce sodium intake as they know it is good for their kidney

function. Their confidence (self-efficacy) convinces the families to avoid adding salt

while preparing and cooking food for them. Thus, outcomes such as better BP or stable

kidney function could come through a feedback loop (see Figure 3.2), and this in turn

reinforces confidence to continue with that behaviour (adhere to diet plan) to promote

their HRQoL.

3.2.2 Self-Efficacy

Social cognitive theory uses the concept of self-efficacy to get a person to change their

behaviour. Self-efficacy is an individual’s belief in their ability to perform certain

behaviour (Bandura, 1997, 2012). Self-efficacy influences a person’s ability to learn and

perform a task, and it reinforces their belief that they will maintain that behaviour

(Lunenburg, 2011; McAlister et al., 2008). For instance, if someone needs to lose weight,

then their confidence must be high for them to follow a weight-reduction diet. Higher

levels of self-efficacy will overcome barriers to follow a diet to reduce weight. A person

with CKD who has a low level of self-efficacy towards implementing lifestyle changes,

such as adhering to a low salt diet, is unlikely to change their behaviour and may worsen

their kidney function through continued hypertension. On the other hand, those with high

self-efficacy who believe they can reduce their salt intake are likely to perform that

behaviour. In CKD, when a person believes in their capacity to change or improve certain

behaviour, they are more likely to continue to do it.

3.2.3 Information Sources

According to Bandura (1997, 2004a, 2012), people acquire confidence in changing

behaviour from four information sources. These are performance accomplishment,

66 Chapter 3: Theoretical framework


vicarious experience, verbal persuasion, and self-appraisal. The four information sources

of self-efficacy are discussed below.

Performance accomplishment

Performance accomplishment is the confidence that comes from within a person when

they feel a sense of success, particularly if they believe that they have mastered that

behaviour (or experience) (Bandura, 1997, 2012; Benight & Bandura, 2004; Hayden,

2009; Luszczynska & Schwarzer, 2005). An experience such as learning a new skill may

increase or decrease a sense of self-efficacy, and this depends on whether the experience

was a success or failure (Bandura, 2012; Lenz & Shortridge-Baggett, 2002). If an

individual is able to establish high levels of self-efficacy early, then she or he will be able

to generalise that experience to another one. Thus, experience of success and failure in

managing behaviour are vital to enhancing self-efficacy levels. When an individual with

CKD is doing an activity, such as following a diet, taking medication, or doing some

exercise, and they feel that is helping their health, then they feel a sense of personal

accomplishment, which further increases their confidence in self-managing their kidney

disease.

Vicarious experience

Vicarious experience refers to the observation of others as another source of acquiring

self-efficacy (Bandura, 1997, 2012; Lenz & Shortridge-Baggett, 2002). Observing people

similar to themselves who successfully perform a task can influence another person’s

self-efficacy (Bandura, 1997, 2012; Hayden, 2009; Holloway & Watson, 2002; Lenz &

Shortridge-Baggett, 2002). By contrast, if people observe someone similar to themselves

fail, this could diminish their self-efficacy (Bandura, 1997; Hayden, 2009; Holloway &

Watson, 2002; Lenz & Shortridge-Baggett, 2002; Luszczynska & Schwarzer, 2005).

Chapter 3: Theoretical framework 67


Observing a role-model who is able to perform a difficult behaviour can enhance another

person’s level of self-efficacy through vicariously experiencing that behaviour.

According to Lenz and Shortridge-Baggett (2002), individuals do learn through the

experiences of others, which they can then use to modify their own behaviour. For

example, if a person with CKD observes others with CKD succeed in managing their

adherence to a low-salt diet, this could influence their confidence to also reduce salt in

their diet. However, in Vietnam, people are often reticent with sharing experiences with

each other, thus learning through vicarious experience in a CKD outpatient clinic is

problematic and alternative methods will be needed.

Verbal persuasion

Verbal persuasion refers to verbally giving instructions, suggestions, and advice to

individuals to convince them to perform new (or modified) behaviours (Bandura, 1997,

2012; Hayden, 2009; Lenz & Shortridge-Baggett, 2002). Self-efficacy derived from

verbal persuasion is the most often used information source because it is easy to use,

although it is less effective than the information sources of performance accomplishment

or vicarious experience (Bandura, 1997, 2012; Lenz & Shortridge-Baggett, 2002). This

may in part explain why it may not work when healthcare providers try to convince

patients that they can change their behaviours to manage their kidney disease. If verbal

persuasion is used in a positive way, it may be more likely to assist individuals to make

more effort (i.e., have greater confidence) to achieve certain actions or behaviours. For

example, if nurses or medical practitioners encourage patients with CKD to manage their

dietary behaviour and inform them about how to choose appropriate food, patients are

likely to put more effort into following their diet. However, if verbal persuasion is

68 Chapter 3: Theoretical framework


provided in a negative way, it may lead patients to doubt their own capabilities and will

therefore lower chances of success (Bandura, 1997; Lenz & Shortridge-Baggett, 2002).

In Vietnam, difficulties with overcrowding and a lack of staff and health resources occurs

in most hospitals (Pron et al., 2008), which is likely to impact on the ability of healthcare

providers to provide further support in chronic disease management. This is particularly

the situation when nurses are focused mainly on administering medications and technical

skills rather than providing patient education (Pham & Ziegert, 2016). So, it is important

therefore to develop suitable verbal persuasion strategies for Vietnam.

Self-appraisal

Self-appraisal is the final information source of self-efficacy. Self-appraisal refers to self-

evaluation of one’s own physiological and emotional states (Bandura, 1997; Hayden,

2009; Lenz & Shortridge-Baggett, 2002; Luszczynska & Schwarzer, 2005). Confidence

derived from self-appraisal is often used to support the other information sources

(Bandura, 1997; Lenz & Shortridge-Baggett, 2002). People rely on information from their

physical and emotional states to judge their abilities to desire or avoid performing a

particular behaviour (Bandura, 1997, 2012; Lenz & Shortridge-Baggett, 2002). Self-

appraisal is necessary so that physical and emotional well-being is improved and negative

emotional states are lowered.

Vietnamese people are reluctant to reveal to others when something is difficult to do, as

they want to appear as having a strong character (Shanahan & Brayshaw, 1995). They are

also unlikely to express their concerns or difficulties in changing behaviour, such as

struggling with adjusting their diet or barriers to treatment adherence. Hence, providing

support that could involve patients in expressing and sharing their concerns or difficulties

is crucial for the success in enhancing their self-efficacy to manage CKD. Providing a

Chapter 3: Theoretical framework 69


supportive environment in which it becomes normal and comfortable to verbalise CKD

self-management difficulties is important in developing self-appraisal skills. Patients may

feel less anxious or confronted to discuss their situation, which may in turn have a

positive effect on self-efficacy.

Among the four information sources of self-efficacy, performance accomplishment is the

most powerful source, as it is based on direct information obtained by individuals as they

learn something new (Lenz & Shortridge-Baggett, 2002). However, Bandura (1997)

recommends that all four information sources should be used together to enhance self-

efficacy because each of the sources have a vital role in the process of changing health

behaviour in a person, as explained above.

3.2.4 Outcome-Expectation

The other factor influencing a person’s behaviour is outcome-expectation. Outcome-

expectation is a person’s beliefs about the possible outcomes that could result from a

given behaviour (Bandura, 1977, 1997; Luszczynska & Schwarzer, 2005). Outcome-

expectation can be physical, social, and self-evaluative (Bandura, 1977, 1997;

Luszczynska & Schwarzer, 2005). Positive or negative expectations can be incentives or

disincentives, respectively. For instance, some physical outcome-expectations of people

with CKD might be breathlessness, pruritus (itching), or trouble sleeping, and these might

provide the motivation to change behaviour (e.g., reducing salt, adhering to medications).

Social and self-evaluative outcome expectations act in a similar way as physical ones

(Bandura, 1997; Luszczynska & Schwarzer, 2005). Therefore, in order to perform an

optimal behaviour for a long period, people have to overcome their physical, social, and

self-evaluative expectations of that behaviour.

70 Chapter 3: Theoretical framework


3.2.5 Summary of Social Cognitive Theory

Social cognitive theory accounts for different people, their personal characteristics, and

behaviour. In SCT, human behaviour can be altered when a person starts doing a new

action; it may generate positive thoughts or even physical energy to continue to perform

that action, which in turn may become regular behaviour (Bandura, 1986). Self-efficacy

and information sources are the central components of SCT (Bandura, 2004a, 2006). Self-

efficacy is a belief in the ability to successfully perform a behaviour, and the four

information sources are strategies to enhance a person’s self-efficacy.

3.3 Social Cognitive Theory and Chronic Kidney Disease Self-Management

A systematic searching process was used to identify if any previous studies in CKD had

been guided by SCT. The searching process involved MEDLINE, CINAHL,

ScienceDirect, ProQuest, and EbscoHost databases using the keywords ‘social cognitive

theory’; ‘self-efficacy model’; ‘self-management’; ‘chronic kidney disease’; ‘chronic

kidney failure’; ‘earlier stages of kidney disease’; ‘pre-dialysis stages of kidney disease’;

‘end-stage kidney disease’; ‘dialysis’; ‘haemodialysis’; ‘kidney transplant’. In the CKD

literature, there have been 14 studies informed by SCT. These studies have been

conducted in the U.S. (Curtin et al., 2008; Patterson, Umstattd Meyer, Beaujean, &

Bowden, 2014; Wells & Anderson, 2011), Netherlands (Wierdsma et al., 2011), U.K.

(Boothby & Salmon, 2013; Byrne et al., 2011; Clarke et al., 2015), Philippines (Balaga,

2012), Japan (Joboshi & Oka, 2016; Kazawa & Moriyama, 2013), Taiwan (Tsay &

Healstead, 2002; Tsay, 2003; Weng et al., 2010), and Iran (Moattari, Ebrahimi, Sharifi, &

Rouzbeh, 2012). Six studies involved an intervention and the remaining studies were

descriptive studies. Of those, three were intervention studies of CKD self-management in

earlier stages of CKD (Byrne et al., 2011; Joboshi & Oka, 2016; Kazawa & Moriyama,

Chapter 3: Theoretical framework 71


2013), while the intervention studies involved dialysis and kidney transplant patients

(Moattari et al., 2012; Tsay, 2003; Wierdsma et al., 2011).

In the three studies involving people in the earlier stages of CKD, one study was a quasi-

experimental one-group design (Kazawa & Moriyama, 2013) and two were RCTs (Byrne

et al., 2011; Joboshi & Oka, 2016). While the two RCTs were reviewed in the previous

chapter, SCT is examined in more detail below.

Kazawa and Moriyama (2013) examined the effects of a self-management skills-

acquisition program to improve self-efficacy and quality of life in people with CKD

stages 3–4 (N = 30) in Japan. The study used SCT to guide the development of the self-

management program, with the main focus being on the approaches for improving

participants’ self-efficacy and required knowledge to foster good communication between

participants and nurses to engage in self-management of kidney disease. The study

provided goals and structure of the self-management program with approaches to

improved self-efficacy. However, how and when the four information sources were used

to enhance self-efficacy were not described.

Byrne et al. (2011) in an RCT (control group = 41, intervention group = 40) purported

using SCT to inform a structured educational intervention designed to improve

knowledge and self-management skills. However, it was unclear how SCT had been

applied in this study. In addition, the use of the self-efficacy and four information sources

were not described.

In a recent RCT, Joboshi and Oka (2016) evaluated the effectiveness of the Encourage

Autonomous Self-Enrichment program for people with CKD (stages 1–5) not receiving

dialysis. In the study, only self-efficacy was selected from SCT as one of the core

concepts of the self-management program. Action plans and specific goal setting were

72 Chapter 3: Theoretical framework


used in the study to foster self-efficacy. The study, like other previously discussed CKD

self-management studies, claimed using SCT, but the study did not use any of the four

information sources to enhance self-efficacy.

The concept of self-efficacy of SCT and its relationships with self-management

behaviours in people with CKD has also been reported in eight descriptive studies

(Balaga, 2012; Boothby & Salmon, 2013; Clarke et al., 2015; Curtin et al., 2008;

Patterson et al., 2014; Tsay & Healstead, 2002; Wells & Anderson, 2011; Weng et al.,

2010). However, seven studies involved people with ESKD receiving dialysis and/or who

had a kidney transplant. Only Clarke et al. (2015), who used qualitative methods

involving people with CKD stages 1–5 (N = 36), sought to understand the barriers,

motivators, and beliefs held by participants towards exercise. The study suggested that

clear goal setting and guidance from healthcare providers were important to support

people with CKD to overcome barriers and improve confidence in exercising (Clarke et

al., 2015). The analysis identified three themes compatible with the triadic reciprocal

causation of SCT, including personal factors, behavioural factors, and environmental

factors. Clarke et al. (2015) found that when participants perceived that previous exercise

had improved their health, they appeared more confident in their ability to exercise

regularly and expressed greater confidence in achieving exercise goals.

Overall, previous CKD self-management studies have used SCT or self-efficacy to

inform an education intervention, although the reporting of how SCT was used and the

benefits of using SCT requires further research.

3.4 Social Cognitive Theory Fit with Vietnam Context

There are several reasons to explain why SCT is a good fit with the context of Vietnam.

First, there have been a number of studies that used SCT as the conceptual model to

Chapter 3: Theoretical framework 73


understand CKD self-management behaviours. These studies have occurred in Western

countries (Boothby & Salmon, 2013; Byrne et al., 2011; Clarke et al., 2015; Curtin et al.,

2008; Patterson et al., 2014; Wells & Anderson, 2011; Wierdsma et al., 2011) and in non-

Western countries (Balaga, 2012; Joboshi & Oka, 2016; Kazawa & Moriyama, 2013;

Moattari et al., 2012; Tsay & Healstead, 2002; Tsay, 2003; Weng et al., 2010),

demonstrating the suitability of the constructs of SCT to differing cultures. These studies

indicate the positive relationship between self-efficacy and self-management behaviours.

Second, two Vietnamese studies have been informed by SCT (Dang et al., 2013; Dao,

2012). Dao (2012) conducted a descriptive study to examine the factors influencing self-

management behaviours of people with type 2 diabetes (N = 198). This study has shown

that diabetes knowledge, belief in treatment effectiveness, healthcare providers’ support,

and diabetes management self-efficacy affected self-management behaviours. Dang et al.

(2013) also conducted an intervention study to evaluate the effectiveness of a self-

management education for people with type 2 diabetes in Vietnam (control group = 44,

intervention group = 42). Self-efficacy was used to guide the development of the study

intervention. The findings showed that participants who received the self-management

intervention had significant improvement in diabetes self-care behaviours and diabetes

self-efficacy when compared to those who did not (p values < .01). Dang et al. (2013)

found that participants in the intervention group showed significantly improved self-care

behaviours compared to the control group at 3 months and 6 months (Ms = 4.78 and 5.20,

SDs = 0.69 and 0.55 versus Ms = 4.15 and 4.02, SDs = 0.79 and 0.88), respectively.

Participants in the intervention group also showed significant improvement in self-

efficacy compared to the control group at 3 months (M = 4.15, SD = 0.40 versus M =

3.70, SD = 0.28) and at 6 months (M = 4.44, SD = 0.62 versus M = 3.70, SD = 0.28)

74 Chapter 3: Theoretical framework


(Dang et al., 2013). Findings of these two studies highlight that SCT fits with people who

have chronic disease in Vietnam.

Third, self-efficacy is a core concept in SCT and is used to improve a person’s

confidence. Confidence is a person’s belief in their ability to succeed, and people all want

to have confidence to do their work, take care of others, and to take care themselves. Self-

efficacy should fit with all people regardless of location or type of chronic disease.

Fourth, a systematic review indicated that behavioural interventions using sources of

information as learning strategies can effectively assist people with chronic disease to

acquire knowledge of the disease, and to become more confident in their ability to better

self-manage their disease (Jang & Yoo, 2012). Welch et al. (2014) in another systematic

review of CKD studies also concluded that information assists with self-management

behaviours. Thus, information sources to enhance self-efficacy could meaningfully fit

with people living in Vietnam.

Despite several strengths to indicate that SCT can be used in the Vietnamese context, the

healthcare context in Vietnam may also be a challenge to using SCT. As previously

discussed in Chapter 1, patient education is not valued and rarely provided by nurses. In

addition, SCT largely focuses on a person’s belief in their ability and confidence to

change behaviour. However, in Vietnam, behaviour is influenced by many cultural

practices. One practice involves everyone sharing meals together, often as a big group, so

reducing salt and avoiding fried foods will be a challenge for a self-management

intervention.

The strengths of using SCT, however, far outweigh the limitations. Thus, SCT is

recognised as a useful theory to guide the intervention to improve health outcomes of

people with CKD in Vietnam. In this study, the individual’s health outcome, such as

Chapter 3: Theoretical framework 75


better BP control, could through a feedback loop provide more confidence to a person to

continue with certain behaviours.

3.5 Chapter Summary

Social cognitive theory has been widely used to inform studies of changing behaviour in

people with chronic disease. This theory provides a framework for researchers to create

robust interventions to enhance the self-efficacy of people with chronic disease to engage

in self-management behaviour. In this research, SCT was used in Phase 3: an intervention

to improve self-management behaviour of people with CKD stages 3–5 who were not

receiving dialysis. The self-efficacy information sources in the intervention program are

described in more detail in Chapter 4. The next chapter explains the research methods for

all three phases.

76 Chapter 3: Theoretical framework


Chapter 4: Methods

4.1 Introduction

In this chapter, the methods for conducting each phase are described. Phase 1 was

undertaken to translate and validate the Kidney Disease Knowledge Survey (KiKS) and

Chronic Kidney Disease Self-Management (CKD-SM) instrument from English into

Vietnamese according to the process of Brislin (1970). Phase 2 psychometrically

evaluated these two instruments using a test/retest design in Vietnam. The aim of Phases

1 and 2 was to prepare instruments for the main study, Phase 3, a pragmatic randomised

controlled trial (pRCT) of a self-management intervention to support people with CKD

(stages 3–5) in Vietnam. The phases are presented in Figure 4.1 and the methods for each

are presented below. In this thesis, the term “the researcher” refers to the PhD candidate.

If other personnel were involved in recruitment or data collection, these are identified by

their role.

Chapter 4: Methods 77
Phase 1: Translation and validation of Phase 2: A psychometric evaluation of
instruments includes the KiKS and CKD-SM the instruments in Vietnamese context

Phase 3: Pragmatic RCT of a self-management intervention program

Increase: knowledge and self-efficacy

Improve: self-management behaviour

Outcomes
 Better blood pressure control
 Better health-related quality of life

Figure 4.1. Study phases.

78 Chapter 4: Methods
4.1 Research Questions

The research questions are:

Phase 1 and 2 research questions:

1. Is the Vietnamese version of the kidney disease knowledge instrument reliable

and valid to measure knowledge of people with CKD?

2. Is the Vietnamese version of the CKD Self-Management instrument reliable and

valid measure of self-management behaviour among people with CKD?

Phase 3 research questions:

3. Among Vietnamese people with CKD stages 3–5, does a self-management

intervention improve knowledge, self-efficacy, and self-management behaviour

compared to standard care in a hospital renal clinic?

4. Among Vietnamese people with CKD stages 3–5, does a self-management

intervention improve blood pressure control and health-related quality of life

compared to standard care in a hospital renal clinic?

4.2 Phase 1: Translation and Validation

Using valid instruments is crucial to measuring outcomes of research. Translation and

validation of instruments are often required when a study uses instruments that have been

developed in another language. In this study, these instruments are the Kidney Disease

Knowledge Survey (KiKS) and the Chronic Kidney Disease Self-Management (CKD-

SM). The KiKS (Wright et al., 2011) is available in English and had not been translated

into Vietnamese. The CKD-SM instrument was developed by Taiwanese researchers (Lin

et al., 2012) and had been used to measure self-management behaviours in people with

Chapter 4: Methods 79
early stages of CKD in Taiwan. The CKD-SM instrument also had not been translated

into Vietnamese. In this phase, the two instruments were translated according to the

Brislin’s (1970) translation model.

Brislin’s translation model has been globally recognised as one of the most reliable

methods for translating research instruments for use in cross-cultural research

environments (Sousa & Rojjanasrirat, 2011). It is a process of forward and backward

translation of the instrument to ensure equivalent meaning to the original version (Sousa

& Rojjanasrirat, 2011). The differences in linguistic use, such as sentence structure, word

phrases, colloquialisms or idioms, and culture are commonly distorted in the translation

of the instrument process (Yu, Lee, & Woo, 2004). Thus, after the translation process, it

is necessary to test the validity and reliability in the context where the instrument will be

used (Yu et al., 2004).

4.2.1 Instruments

Prior to translating both instruments, permission to translate and adapt these instruments

was provided by the instrument developers (see Appendices 1 and 2).

Kidney disease knowledge survey

The KiKS was developed to assess the knowledge related to kidney disease management,

such as kidney functions, treatment options for kidney failure, signs and symptoms of

disease progression, potential medications that harm or benefit the kidney, BP targets, and

other information related to preserving kidney function (Wright et al., 2011). This

instrument contains 28 items, with 23 items requiring a dichotomous Yes/No answer and

five multiple choice items (see Appendix 3). According to Wright et al. (2011), this

80 Chapter 4: Methods
instrument has good reliability with a Kuder-Richardson-20 coefficient of .72. This

instrument also has been tested in Australia (Wembenyui, 2017).

Chronic kidney disease self-management instrument

The CKD-SM instrument includes 29 items divided into four factors: self-integration,

problem-solving, seeking social support, and adherence to recommended treatment

regimen (Lin et al., 2012). These factors align with Lorig and Holman (2003) (see

Chapter 2, p. 33). Participants indicate how often they perform each behavioural

statement on a scale of 1 to 4 (1 = never, 2 = sometimes, 3 = usually, 4 = always) (see

Appendix 4). Cronbach’s alphas range from .77 to .92 (Lin et al., 2012). Three items were

added for this study, including one item about medication [item 30: I take my medications

even when I am not at home] and two items about problem-solving [item 31: I take action

when my early warning signs and symptoms get worse; item 32: When I have questions

about my kidney disease, I discuss what to do with my doctors or nurses]. These three

items were added with permission from the instrument developer because the original

CKD-SM instrument did not include these aspects of self-management. Therefore, a 32-

item CKD-SM instrument was used in Phases 1 and 2. This instrument has been tested in

an English-speaking country [Australia, Wembenyui (2017)].

4.2.2 Process of Translation

The purpose of the translation process in this study is to convert the KiKS and CKD-SM

instruments from English into Vietnamese; however, the meaning of the instrument items

in the Vietnamese culture should be maintained.

While there are no standard guidelines for instrument translation from the source

language to the target language (Maneesriwongul & Dixon, 2004), the most frequently

Chapter 4: Methods 81
used method in cross-cultural studies is one-way translation (Weeks, Swerissen, &

Belfrage, 2007). However, using this method often results in low level of validity and

reliability of the study instruments (Erkut, Alarcón, Coll, Tropp, & García, 1999; Sperber,

Devellis, & Boehlecke, 1994). Hence, the preferred and recommended approach should

involve at least forward translation, back-translation, and testing among target language

subjects (Maneesriwongul & Dixon, 2004).

Among the translation methods, Brislin’s model (1970) is a well-known method for

translating and back-translating instruments (Jones, Lee, Phillips, Zhang, & Jaceldo,

2001). A disadvantage of Brislin’s translation model is that it requires many independent

bilingual translators to blindly translate an instrument from the source language to the

target language, and conversely from the target language to the source language until

content equivalence is achieved between the source and the translated versions. As a

result, it is difficult for researchers to estimate how many independent bilingual

translators are needed to satisfy the above process (Cha, Kim, & Erlen, 2007). Moreover,

several factors may influence the selection of the translation methods, such as the study

objectives, availability of translators, budget, and time (Maneesriwongul & Dixon, 2004).

Thus, an adaptation of the translation method is warranted. Sousa and Rojjanasrirat

(2011) recommend a 4-step process.

The first step was the forward translation of the KiKS and CKD-SM from English (source

language [SL]) into Vietnamese (translated language [TL]) by two bilingual healthcare

professionals. Step 2 was the blind back-translation (BT) of the instruments into English

by two bilingual healthcare professionals. Step 3 was the comparison of the original

version and the back-translated version of the KiKS and CKD-SM. The final step was the

review of the instruments by an expert panel. The expert panel comprised a renal medical

82 Chapter 4: Methods
practitioner, two renal nurses, a general medical practitioner, and two general nurses to

assess the content validity of the instruments. The panel also included two primary school

level teachers to assess whether the level of language was appropriate, and two older

adults to assess whether the language could be understood by an older population who are

often less literate. The translation process is summarised in Figure 4.2.

Step 1 Step 2 Step 3 Step 4

TL1 BT1

Compare Modify as TL for


Compare Compare
SL BT1 and per the expert
TL1 and TL2 with SL
BT2 comments panel

TL2 BT2

Figure 4.2. Translation process adapted from Sousa and Rojjanasrirat (2011).

Notes. SL refers to source language; TL refers to translated language; BT refers to back translation

4.2.3 Data Analysis

Data was entered into and analysed using Microsoft Excel 2010. To assess the validity of

the Vietnamese version of the two instruments, the data generated from the panel review

of both instruments (V.KiKS and V.CKD-SM) was used to calculate the scale and item

content validity average scores (S-CVI/Ave), which is calculated as an average of the

item-level content validity (I-CVI) by summing the rating and dividing the number of

items (Polit & Yang, 2016).

Chapter 4: Methods 83
4.3 Phase 2: Psychometric Evaluation

4.3.1 Design

The design of Phase 2 was a test/retest of study instruments using a convenience sample

of patients with CKD in Hanoi, Vietnam.

4.3.2 Setting

The study was conducted in the Department of Nephro-Urology, Bach Mai Hospital.

Bach Mai Hospital is located in the centre of Hanoi and is one of the largest hospitals in

Vietnam. The hospital was established in 1911 during the French colonial rule. It plays an

important role in the healthcare system of Vietnam and is one of three highly specialised

hospitals for internal medicine. Currently, Bach Mai Hospital has nearly 2,000 beds,

although it typically has 3,000 inpatients (i.e., in Vietnam there are often 2–3 patients per

bed). Many people with CKD from Hanoi or surrounding provinces attend this hospital

for treatment.

4.3.3 Sample

According to Kline (2013), the sample size for test and retest reliability and to measure

the internal consistency reliability should contain at least 100 participants to minimise

statistical error. In this phase, 158 adults with CKD completed both instruments. In the

retest, it is recommended that the study should include at least 20% of the sample (Sousa

& Rojjanasrirat, 2011). Thus, 52 participants from the initial sample (33%) were retested.

A period of one to two weeks is also recommended (EMGO+ Institute for Health and

Care Research, 2010). In addition, due to time constraints for this PhD, the retesting was

conducted one to two weeks after the initial testing.

84 Chapter 4: Methods
4.3.4 Eligibility Criteria

This study recruited 158 participants who had been diagnosed with CKD (any stage),

aged ≥ 18 years, and able to speak, read and understand Vietnamese language. Exclusion

criteria consisted of participants who were unwilling to participate, had cognitive

impairment, serious illness (e.g., cancer, stroke, and dementia) determined by treating

medical practitioner.

4.3.5 Data Collection

Data was collected from participants and medical records. Participants completed three

self-report instruments: i) Demographic data was collected on age, gender, marital status,

individual and household incomes, level of education, and occupation using a researcher-

developed questionnaire (see Appendix 7); ii) V.KiKS, and iii) V.CKD-SM (see

Appendices 8 and 9, respectively). Data was extracted from medical records for current

medications and renal clinical characteristics (see Appendix 10).

4.3.6 Procedure

First, Queensland University of Technology ethics approval was obtained, which

included permission from the Director of Bach Mai Hospital (see Appendices 5 and 6).

Second, internal approval was received from the Head of Department of Nephro-Urology

in this hospital. Third, potential participants with CKD were selected by convenience

sampling. The researcher explained the purpose and method of the study, explained their

right to participate or withdraw from the study, and sought written informed consent if

they were willing to participate in the study. For the testing of instruments, data was

collected in the waiting area at the Department of Nephro-Urology. The instruments were

evaluated in person for the initial testing while the participant was in the renal

Chapter 4: Methods 85
department, and the retest instruments were administered by post. In the retest,

participants indicated on their consent form whether or not they agreed to complete both

instruments. For those who indicated their willingness to do the retest, instruments were

distributed by post one to two weeks after the completion of the first survey. Instruments

were completed at home and sent back, using another pre-paid envelope to the researcher

(her office at Hanoi Medical College, Hanoi). These instruments took approximately 20–

30 minutes to complete on each occasion. Clinical data was collected by the researcher.

4.3.7 Data Analysis

Data was entered into and analysed using IBM SPSS version 22 (IBM Corporation, NY,

USA). To measure the psychometric properties, internal consistency, and test/retest

reliability were calculated using Kuder-Richardson-20 coefficient (KR20), Cronbach’s

alpha (Cronbach’s α), and Pearson/Spearman’s rho correlation coefficients, intra-class

correlation coefficient, and paired sample t-test. The Mann-Whitney U Test and

independent sample t–tests were used to compare the results of outcome variables for

demographic characteristics and results. The analysis was divided into four steps:

Step 1: Descriptive statistics including means (Ms), standard deviations (SDs), number (n)

and percentage (%) distribution were calculated to describe demographic characteristics,

renal clinical characteristics of the participants and individual item scores of the two

instruments.

Step 2: The data quality, internal consistency and correlations between items and the sum

of the other items were assessed. Data quality was assessed in terms of mean for each

item with standard deviation, median, percentage of missing data. Internal consistency of

the V.CKD-SM instrument was assessed by using Cronbach’s alpha and

86 Chapter 4: Methods
Pearson/Spearman’s rho correlation coefficients. For the V.KiKS, the internal consistency

was assessed by using KR20.

Step 3: Test/retest reliability of 52 participants was assessed using intra-class correlation

coefficient and paired sample t-test.

Step 4: Comparison of the V.KiKS and V.CKD-SM scores by demographic

characteristics were assessed by using Mann-Whitney U Test and independent-samples t–

tests, respectively.

4.4 Phase 3: A Pragmatic Randomised Controlled Trial

4.4.1 Design

Randomised controlled trials (RCTs) are generally recognised to be the “gold standard”

for evaluating an intervention program on measured outcomes (Relton, Torgerson,

O'Cathain, & Nicholl, 2010; Saturni et al., 2014). However, using the “gold standard” has

limitations in everyday clinical practice (Concato, Shah, & Horwitz, 2000; Herland,

Akselsen, Skjønsberg, & Bjermer, 2005; Saturni et al., 2014; Ware & Hamel, 2011). For

example, the use of rigorous patient selection based on inclusion and exclusion criteria

could result in a study population that differs from the actual patient population (Ware &

Hamel, 2011). A pragmatic RCT (pRCT) design is useful to evaluate interventions in

routine clinical care (Saturni et al., 2014). In CKD, using a pRCT enables a broader range

of patients to be included to test an intervention applicable to patient care and to measure

relevant patient-centred outcomes, thus enhancing external validity and the translation of

results into clinical care (de Boer et al., 2016). The design of this phase was, therefore, a

single-blind pRCT with 1:1 allocation into control and intervention groups. This trial

consisted of a self-management education program provided to the intervention group of

Chapter 4: Methods 87
people with CKD stages 3–5 who were not yet receiving dialysis. The control group

received standard care.

4.4.2 Participants

Patients with CKD attended outpatient hospital clinics for regular appointments with

renal medical practitioners. Participants in this phase were not involved in Phase 2.

Inclusion criteria

Participants were diagnosed with CKD (stages 3–5) and not expected to start dialysis

during the study, aged ≥ 18 years, able to speak, read, and understand Vietnamese

language. They also had to be contactable via telephone for follow-up.

Exclusion criteria

Participants were excluded if they were enrolled in other clinical trials, unable or

unwilling to provide informed consent, undertaking peritoneal dialysis or haemodialysis,

had cognitive impairment, or were seriously unwell.

Settings and Locations

The study was conducted in the department of Nephro-Urology, Bach Mai Hospital. The

hospital provides treatment for people who live in Hanoi City, as well as other provinces

in the north of Vietnam.

The Nephro-Urology Department comprises an 80-bed inpatient ward (over 3,563

patients per year) and outpatient clinics (approximately 18,000 patients visit per year)

(Tuyen, 2011). Typically, 50 people attend the Nephro-Urology outpatient clinics or are

admitted to the hospital each day. There are two areas where outpatient clinics are based:

88 Chapter 4: Methods
the Nephro-Urology Department and general Outpatient Department. Both departments

are standard places for patients to receive blood test results and a completed record made

by the medical practitioners. The patient takes these documents home and brings them

back at subsequent clinic appointments. There are no hospital records for outpatient

clinics.

4.4.3 Intervention

Control group

Participants randomised to the control group in this study received standard CKD care

from their healthcare providers, which is focused on taking medications and receiving

basic healthcare advice. Participants attend outpatient appointments every 1–3 months,

although this depends on the level of renal function. The participants in the control group

were provided with a CKD booklet at the completion of the study.

Intervention group

Participants randomised to the intervention group received both the standard CKD care

from their healthcare providers, and a 12-week self-management intervention guided by

SCT delivered by this researcher who is a nurse. Participants received a CKD booklet and

a handout that summarised the intervention topics before participating in an individual

face-to-face educational session and two follow-up phone calls. The four information

sources of self-efficacy were used to guide the delivery of the face-to-face session and

follow-up phone calls (see below). The flow chart of the intervention group in this study

is presented in Figure 4.3.

Chapter 4: Methods 89
Self-management intervention program

Face-to-face session by using the Follow up phone calls of 20 to 30


four information sources (60 mins
minutes)  Follow up two priorities goals
 Planning and suggestions: health by using verbal persuasion and
diet, food labels, salt intake, renal self-appraisal together with
clinical test results, and exercise performance accomplishment
 Identify two main goals related to and vicarious experience
self-management

Increase knowledge and self-efficacy levels

Improve self-management behaviour

 Better blood pressure control


 Improve health-related quality of life

Figure 4.3. Framework of the self-management intervention program.

90 Chapter 4: Methods
Chronic kidney disease booklet

The CKD booklet was adapted (with permission) from Kidney Health Australia’s (2008)

Living with Reduced Kidney Function handbook (see Appendix 11) and American Kidney

Fund’s (2010) Living Well with Chronic Kidney Disease handbook (see Appendix 12).

The topics included in the English version of the CKD booklet were discussed by the

researcher with her supervisory team to make the content culturally relevant and at a

suitable level of Vietnamese speaking patients with CKD. The English CKD booklet was

then translated into Vietnamese by the researcher. The Vietnamese version was sent to a

graphic designer to design the booklet for patients. The Vietnamese CKD booklet

explains the functions of the kidneys, the early signs and symptoms of CKD, and

strategies for managing or delaying the progression of CKD, such as the benefits of

maintaining a healthy lifestyle and adherence to medications. It also contained a diary for

participants to record medication side effects, monitor their clinical data, treatment plan,

and questions for medical appointments. The handout summarised the main points in the

CKD booklet and important self-management skills, such as taking medications, nutrition

and exercise, smoking cessation, understanding renal clinical results, and using available

resources to self-manage CKD. All intervention materials were prepared for a primary

school reading level (see Appendix 13).

Face-to-face education session

The intervention started with a 1-hour face-to-face session, focused on improving CKD

knowledge and self-management by utilising the four self-efficacy information sources

(see Table 4.1). As knowledge is vital in improving self-management behaviour (Curtin,

Sitter, Schatell, & Chewning, 2004), and other studies have found that people with CKD

have little or no knowledge related to medication, foods, and symptoms of CKD

Chapter 4: Methods 91
(Finkelstein et al., 2008; Wright Nunes et al., 2011), the content of the face-to-face

session focused on explaining these topics. The four information sources of self-efficacy,

performance accomplishment, vicarious experience, verbal persuasion, and self-appraisal

(Bandura, 1997; Lenz & Shortridge-Baggett, 2002) were used. The following sections

explain how each self-efficacy information source was used in the face-to-face session.

Performance accomplishment is the confidence when individuals believe that they have

mastered that behaviour and it is the most important strategy to assist participants to

actually engage in performing self-management behaviour (Bandura, 1997). Participants

were asked to identify CKD-related problems and set two realistic achievable goals based

on their priorities. These goals were recorded in their CKD booklet and monitored at each

follow-up. By doing that, the researcher assisted participants to review problems or issues

related to their kidney disease management and to improve their self-management skills

to overcome it.

Vicarious experience can increase self-efficacy through observation of people similar to

oneself successfully performing a task (Bandura, 1997). In Vietnam peer learning through

vicarious experience in renal clinics is not common. Hence, local images and pictures

throughout the CKD booklet were used to show food labels, healthy foods to eat, and

unhealthy foods to avoid. In addition, two written scenarios of people who successfully

overcome challenges to self-manage their kidney problems were developed to assist

participants to learn about other people’s experience of managing CKD.

Verbal persuasion was also used to enhance participants’ self-efficacy. Verbal

suggestions and advice were provided to each individual to promote understanding about

their kidneys and to self-manage their disease. Although knowledge alone does not

change behaviour, the goal was to increase individual self-efficacy levels and support

92 Chapter 4: Methods
participants to start taking action. The researcher used the CKD booklet and

encouragement to help individuals develop achievable goals and identify strategies to

have better self-management of kidney disease.

Self-appraisal, the final information source, was used to encourage participants to

identify where they were succeeding with self-management such as adhering to

medications, and also to express their concerns or difficulties in managing CKD, for

instance struggling with reducing salt in their diet. Participants were then supported to

identify possible solutions to achieve their goals.

Follow-up education sessions

Participants received two follow-up phone calls of 20−30 minutes at weeks 4 and 12 by

the nurse researcher to reinforce the self-management action plan and to review progress

towards goals. The focus was to identify improvements and to encourage participants to

continue behaviour change through positive reinforcement. Structured around the CKD

booklet topics, the discussion supported participants to build on small changes and to use

problem-solving skills to overcome daily challenges. For instance, the researcher asked

participants to read and self-monitor their renal clinical test report after seeing the renal

medical practitioners. Participants were asked to continue to use the CKD booklet at

home and encouraged to seek family and social support for long-term behavioural

change. Performance accomplishment was also used in follow-up phone calls to assist

participants to monitor their goals. The first goal was reviewed at the first follow-up

(week 4). If participants achieved the first goal, they were asked to start working on the

second goal. However, those who did not succeed in the first goal would then be

encouraged to re-adjust the first goal, and the researcher re-assessed that goal at the next

follow-up 12 weeks later. Participants were also asked to review the two scenarios and

Chapter 4: Methods 93
discuss with the researcher via telephone call follow-up. The phone call follow-up also

allowed time for participants to ask any questions they may have (see Table 4.2).

94 Chapter 4: Methods
Table 4.1. Face-to-Face Self-Management Education Program
(Week 0: 60 mins)
Topics SCT Information Mins Contents Goals for Methods Main focus
sources participants
Pre-intervention 5 Review current disease condition of Comfort and  Face-to-face Understanding
participant ready for a face- communication participant
to-face session
Identifying  Performance 5–7 Identify one major problem/issue of Be able to Progressive goal Focusing on
problems/issues accomplishment concern for: identify the setting: problems/issues
 CKD knowledge problem/issue  Invite participant related to disease-
for CKD to identify specific
 CKD self-management
knowledge and problem/issue knowledge and
CKD self- CKD self-
 Prioritise 1 to 2
management management
main goals to
deal with 1 to 2
major
problems/issues
Understanding of  Verbal persuasion 20 Summary of the CKD booklet: Understand the  Provide a Focusing on
CKD specific  Vicarious CKD knowledge: importance of handout knowledge and
knowledge and experience CKD knowledge  Face-to-face tasks which
 Kidney function
the importance of and CKD self- education participants
CKD self-  CKD symptoms management in should know and
 Questions and
management CKD self-management: the CKD booklet able to perform
answers
 CKD control [e.g., BP control,
medicines, healthy lifestyles]
 Share two scenarios from the
CKD booklet
 Understand main renal clinical
results [e.g., eGFR, urea, Hb]
 Seeking information to self-
manage kidney problems

Chapter 4: Methods 95
Topics SCT Information Mins Contents Goals for Methods Main focus
sources participants
Identifying self-  Performance 5  Identify two priority goals related Be able to state  Documentation Focusing on
management’s accomplishment to self-management behaviours two achievable of the goals importance of
goals personal self- CKD control to
management motivate
goals participants for
self-management
to slow the
progress of
kidney disease
and maintain BP
control
Planning:  Verbal persuasion 5–8 Option topics linked to individual Understand the Handout focused on: Focusing on tasks
 Diet  Vicarious goals [for example]: important tasks  Good diet which participants
 Medications experience  Meal planning for healthy diet: of CKD self- are able to
 Example of
 Physical salt/fluid balance, potassium, management perform
 Self-appraisal reading renal
activity phosphate, calcium intake clinical test
 Read the renal clinical test results results
 Physical activity
 Exercise safety
Understanding 5  One on one teaching about food Persuade the
food labels of labels and salt intake participant to read
different products  Share experience of choosing food labels before
healthy food and reading food buying and eating
labels using local images and
pictures

Suggestions on  Verbal persuasion 5–10  Slowing progression of CKD by Promote discussion:


following up the  Self-appraisal maintaining healthy lifestyles  Questions and
self-management  Positive reinforcement in answers
program response to participants’ concerns  Provide positive
 Participants to identify two reinforcement

96 Chapter 4: Methods
Topics SCT Information Mins Contents Goals for Methods Main focus
sources participants
priority self-management goals
(which will be followed up during
telephone calls)
 Provide nurse researcher’s phone
number so that participants can
call to ask questions
Note. SCT, Social cognitive theory; CKD, Chronic kidney disease; BP, Blood pressure; Hb, Haemoglobin, eGFR, estimated glomerular filtration rate.

Chapter 4: Methods 97
Table 4.2. Follow-up Self-Management Education Program
(Weeks 4 and 12: 20–30 mins)
Time Topics SCT Information Mins Contents Goals for Methods Main Focus
sources Participants
Follow-up via Discussion:  Verbal persuasion 10–15  Discuss positive Understand and  Feedback on  Focusing on
telephone call  Review the physiological and be able to participant’s the first
or in the clinic first goal psychological responses perform better success in priority self-
(Week 4) from Week 0 to healthy eating and the first priority following the management
physical activity self- healthy eating goal which
 Move to the
management and physical identify in the
second goal
goal and start activity face-to-face
if the first
 Self-appraisal 10–15  Discuss two priority self- working on the  Encourage session
goal was
management goals as second self- participants to  Re-adjustment
achieved  Performance
listed above on the face- management achieve their of the first
 Reinforce accomplishment
to-face session goal goals goal if needed
CKD  Vicarious
knowledge experience  Provide exercise safety  Exhibit empathy  Some
booklet tips for home use in the and caring information
CKD booklet will also be
 Enhance the participant to  Incorporate reinforced, and
talk and get helps from problem-solving allow time to
family members, friends, activities ask questions
and significant others or concerns
Follow-up via Discussion:  Verbal persuasion 10–15  Discuss positive Understand and  Feedback on  Focusing on
telephone call  Re-assess the physiological and be able to participant’s the second
or in the clinic first goal if psychological responses perform better success in priority self-
(Week 12) needed in to healthy eating and the second following the management
Week 4 physical activity priority self- healthy eating goal which
management and physical identify in the
 Review the
goal and activity face-to-face
second goal
maintain the session
from Week 0  Self-appraisal 10–15  Discuss two priority self-  Encourage
management goals as first goal participants to  Re-adjustment
 Reinforce  Performance
listed above on the face- achieve their of the second

98 Chapter 4: Methods
Time Topics SCT Information Mins Contents Goals for Methods Main Focus
sources Participants
CKD booklet accomplishment to-face session goals goal if needed
 Vicarious  Provide exercise safety  Exhibit empathy  Some
experience tips for home use in the and caring information
CKD booklet will also be
 Enhance the participant to  Incorporate reinforced, and
talk and get helps from problem-solving allow time to
family members, friends, activities ask questions
and significant others or concerns

Note. SCT, Social cognitive theory; CKD, Chronic kidney disease.

Chapter 4: Methods 99
4.4.4 Length of Follow-up

As previously identified in Chapter 2 (see section 2.5.2) the duration of the CKD self-

management interventions varied in the length of the follow-up period. For this research,

16 weeks’ duration with two follow-up education phone calls at week 4, week 12 and two

follow-up repeated measures at weeks 8 and 16 was deemed suitable and feasible.

Previous literature reported that behaviour changes in people with CKD showed good

improvement in the first 6 months, with most of the improvement seen by 3 months

(Kazawa & Moriyama, 2013; Lin et al., 2013; Tsay, 2003). This could be because new

habits have formed. In addition, improving participants’ self-efficacy about their ability to

implement care successfully is a crucial step in promoting active self-management

(Ismail, Winkley, & Rabe-Hesketh, 2004; Wu et al., 2008). Moreover, according to

Bandura (2004b), people need support to be confident in their ability to learn a new

behaviour and rehearse what they have learnt to achieve better outcomes.

In Vietnamese context, little research has been conducted in caring for people with CKD,

particularly for those with CKD at outpatient clinics in hospitals. This study is an initial

step in providing a self-management intervention to support people with CKD. For

feasibility reasons, a longer follow-up period was not possible for this PhD study.

4.4.5 Outcomes

The primary outcomes of kidney disease knowledge (V.KiKS) and self-management

behaviour (V.CKD-SM), along with self-efficacy (V.SECD), were measured at baseline,

weeks 8 and 16. Secondary patient outcomes including health-related quality of life

(V.SF-36v2) and BP control were measured at baseline and upon completion of the

follow-up period at week 16. Additional measurements including demographic

100 Chapter 4: Methods


characteristics, comorbidities, renal and clinical data were obtained to understand the

characteristics of the study sample. Outcome data was measured by two research

assistants. Both research assistants were newly graduated nurses, had no association with

the clinical service, and were employed the researcher. Research assistant 1 (RA1)

recruited and collected baseline data from participants. Research assistant 2 (RA2)

measured repeated outcomes of the study. The RA2 first contact with participants was at

week 8 and then again at week 16 via phone or in the renal clinics to measure outcome

data. The RA2 did not have access to the coding sheet or the interpretation of the code

and was blinded to group allocation.

Self-management affects a number of outcomes, including both short- and long-term

(Ryan & Sawin, 2009). Thus, outcome data required repeated measures at weeks 8 and 16

to assess the effectiveness of the self-management education program on participants’

knowledge, self-management, and self-efficacy. Repeated measures also helped to

examine the trend of the outcomes data after delivering the intervention compared to

those in the control group, and to explore the overall treatment effects of groups × time

interaction on outcome variables. In addition, repeated measures enabled comparison to

the existing literature.

Primary outcomes

Knowledge

Knowledge was measured by using the Vietnamese Kidney Disease Knowledge

instrument (V.KiKS) that was assessed for validity and reliability in Phase 1 and Phase 2.

The V.KiKS is a self-report instrument comprising 28 items that measure the participant’s

knowledge related to kidney disease management, such as kidney function, treatment

options for kidney failure, signs and symptoms of disease progression, potential

Chapter 4: Methods 101


medications that harm or benefit the kidney, BP targets, and other information related to

preserving kidney function (Wright et al., 2011). The V.KiKS takes approximately 10

minutes to complete. The items are scored as 1 = correct, or 0 = incorrect, and total scores

range from 0 to 28. The higher score the participants receive, the better their knowledge

of CKD. The Kuder-Richardson-20 reliability coefficient of the V.KiKS was .58.

Moreover, the test/retest analyses showed that the V.KiKS was relatively stable because

the intra-class correlation coefficient (ICC) was .82 (p < .01), and this was above the

acceptable cut-point of .70 (see Table 5.9). The V.KiKS was measured at baseline, week

8, and at the end of the intervention (week 16) (see Appendix 18).

Self-management behaviour

Self-management behaviour was measured by using the Vietnamese Chronic Kidney

Disease Self-Management instrument (V.CKD-SM) that was assessed for validity and

reliability in Phases 1 and 2. The V.CKD-SM self-report instrument comprises 32 items

and measures whether participants perform a range of self-management behaviour

factors, including self-integration (11 items); problem-solving (11 items); seeking social

support (5 items); and adherence to recommended regimen (5 items). The subscales are

constructed by summing the scores on the separate items belonging to the subscale.

Respondents answer each item on a Likert scale from 1–4; 1 = never, 2 = sometimes, 3 =

usually, 4 = always. Total scores of the V.CKD-SM are also constructed by summing the

scores on the four subscales and range from 32 to 128. High scores indicate a high level

of self-management behaviour in managing CKD. The instrument takes about 15 minutes

to complete. The Cronbach’s alpha of the V.CKD-SM was .93 and the one to two-week

test/retest Pearson correlation was .98 (p < .01). The Cronbach’s alphas for the four

subscales were .87 (self-integration), .87 (problem-solving), .67 (seeking social support),

102 Chapter 4: Methods


and .67 (adherence to recommended regimen) (see Phase 2 Results, Table 5.8). The

V.CKD-SM instrument was measured at baseline, at weeks 8 and 16 (see Appendix 19).

Secondary outcomes

Self-efficacy

Participants’ self-efficacy was measured by using the Vietnamese Self-efficacy for

Managing Chronic Disease 6-item Scale (V.SECDS). Developed by Lorig et al. (1989),

the short form of self-efficacy chronic disease scales (SECDS) contains six items and

measures the level of confidence with undertaking a range of chronic disease-related

activities. Participants indicate a score from 1 to 10 (1 = not at all confident, 10 = totally

confident). Higher scores indicate greater levels of self-efficacy. This instrument is

widely used in chronic disease studies and was tested on 605 participants with chronic

disease (Lorig, Sobel, Ritter, Laurent, & Hobbs, 2001) and the Cronbach’s alpha was .91.

Given the scope of this phase, it was decided to forward-translate this instrument with

two independent bilingual translators. The V.SECDS was measured at baseline, weeks 8

and 16 (see Appendix 20).

Health-related quality of life

Health-related quality of life (HRQoL) is important to measure because of the impact of

CKD on quality of life (see also section 2.2.4), and it is also needed to determine whether

improved self-efficacy has led to an outcome (see diagram of SCT on p. 64). The SF-

36v2 (McHorney, Ware, & Raczek, 1993) was used to measure HRQoL in this study.

This instrument was selected because it measures participants’ perceptions of their own

physical and mental function. Each sub-scale is scored between 0 and 100 and a higher

score indicates a better level of HRQoL in that domain. In addition, the SF-36v2 has been

Chapter 4: Methods 103


translated into several languages, including Vietnamese (Bullinger et al., 1998; Le, Vu, &

Schelling, 2014; Ware et al., 2008). Le et al. (2014), in a study of 1,800 people in Hanoi,

measured the consistency of the Vietnamese SF-36v2 (V.SF-36v2). The V.SF-36v2 has

high reliability with Cronbach’s alpha coefficients for the subscales ranging from .75 to

.88 (Le et al., 2014). The V.SF-36v2 is available for free to PhD students (see Appendix

14). The V.SF-36v2 was measured at baseline and at week 16 when the study ended (see

Appendix 21).

Blood pressure control

A manual BP cuff was used to measure BP at each clinic appointment. The result was

routinely recorded in the medical record. Both systolic pressure (SBP) and diastolic

pressure (DBP) in mmHg were obtained at baseline and at week 16 (see Appendix 23). A

target of BP of < 140/90 mmHg is recommended for patients with nondiabetic CKD;

however, for those with proteinuria a BP < 130/80 mmHg is normally suggested (Tsai et

al., 2017).

Additional measurements

Demographic characteristics

Demographic data were age, gender, marital status, individual and household incomes,

level of education, and occupation, health insurance, family size, length of time of CKD

diagnosis, and Google search on kidney problems. This information was collected at

baseline only, using a researcher-developed questionnaire (see Appendix 22).

104 Chapter 4: Methods


Renal and clinical data

This data was obtained from patients’ medical records and comprised the main cause of

renal failure, weight and height (or BMI), blood results (sodium, potassium, phosphate,

calcium, bicarbonate, blood glucose level, HbA1c, creatinine, urea, eGFR, albumin,

haemoglobin, cholesterol, high-density lipoprotein and low-density lipoprotein, iron), and

a list of current medications. The renal clinical data were obtained at baseline (see

Appendix 23).

Charlson comorbidity index

The Charlson comorbidity index (CCI) was used to assess the presence of other chronic

disease in study participants (see Appendix 24). The CCI is widely used in research

(Quan et al., 2011). The CCI consists of 16 items and the severity of comorbidity was

classified into three levels according to the score (see Appendix 25). Mild CCI is a score

of 1–2; moderate CCI is a score of 3–4, and severe CCI is a scores ≥ 5 (Charlson,

Szatrowski, Peterson, & Gold, 1994; Charlson, Pompei, Ales, & MacKenzie, 1987; You-

qun et al., 2014). As data was verbally collected by the RA1, there was no need to

translate the CCI into Vietnamese. The CCI was measured at baseline.

4.4.6 Sample Size Estimation

The sample size was calculated using G*power 3.1. The pRCT aimed to improve

participants’ self-management behaviour. Hence, the sample size was calculated

assuming 80% power (1-beta = .8), a type 1 error rate (alpha) of .05 (two-tailed), and a

medium effect size (Cohen’s d = 0.5) on improved self-management reported by Bonner

et al. (2014) in other CKD studies where participants were not receiving dialysis. A

minimum of 134 participants (67 participants per group) were required. The study was

Chapter 4: Methods 105


conducted from November 2015 to February 2016 to recruit this number of participants

and then follow-up participants until June 2016.

4.4.7 Randomisation

Eligible participants were randomised into two groups, using sequentially numbered,

opaque sealed envelopes. All investigators and participants were blinded to group

allocation until after recruitment, consent, and baseline data were completed.

4.4.8 Sequence Generation

The randomisation sequence was developed by the researcher by generating a random

number table in Microsoft Excel to eliminate selection bias. The table with the random

numbers was checked to ensure there was a balance in the number of participants

allocated to control and intervention groups. The opaque sealed envelopes were then

coded by the researcher according to the random-number table.

4.4.9 Allocation Concealment

Allocation concealment was used to prevent selection bias (Moher et al., 2010). The

researcher placed a code into the envelopes before sealing. RA1 was blinded to the

coding and the envelopes were opaque and unable to be read when held to the light. The

coding sheet and the interpretation of the code were then given to RA1 to use to randomly

allocate the study participants into the control or intervention groups.

Research assistant 1 assessed eligible participants, discussed the purpose and methods of

the study with each eligible participant, obtained consent, and enrolled the participant in

the study. Baseline data was collected by the RA1 before the participant chose their

envelope for group allocation. Participants who were randomly assigned to the

106 Chapter 4: Methods


intervention group then met with the researcher to receive the education materials (a CKD

booklet and a handout that summarised the intervention topics) before participating in the

face-to-face education session.

4.4.10 Blinding

Due to the nature of the intervention it was difficult to achieve blinding in this study.

Only research assistants who collected data at baseline (RA1) and follow-up (RA2) were

blinded to group allocation to minimise bias. Renal medical practitioners and clinic

nurses could not be blinded in this study; however, they did not have access to the coding

sheet or a list of participants in both the intervention and control groups. Neither the

researcher who provided the intervention nor the participants with CKD were blinded.

4.4.11 Recruitment

The follow steps describe the process of recruitment.

Step 1: the RA1 met with a renal medical practitioner who was able to identify eligible

potential participants who were pre-dialysis (i.e., CKD stages 3–5). Then the RA1 met the

renal nurse at the clinic patient registration desk to ask the renal nurse to give the

recruitment flyers to potential eligible participants to read and learn about the main study.

It was possible for the renal nurse to identify potential participants after completing the

clinic patient registration procedure. After reading the recruitment flyer, if a patient was

willing to speak with a research assistant, the renal nurse referred the patient (potential

participant) to the RA1 who was sitting in the waiting room. It took about 5 minutes to

complete this step.

Step 2: the RA1 would then meet eligible participants with CKD in the waiting room at

the clinic, introduce themselves, the purpose and methods of the study and invite them to

Chapter 4: Methods 107


participate. Potential participants could ask the RA1 questions about the study, and also

read the Participant Information Sheet before providing written consent. Participants

could decide to sign the consent form immediately after understanding the study or take

as long as necessary (because they are in the clinics for 3 to 4 hours). Alternatively, a

participant could take the Participant Information Sheet home to discuss with their family

or friends and the RA1 spoke with them when they next came to the clinic.

Step 3: participants were invited to complete the self-reported instruments before being

randomly assigned into either the control group or the intervention group. The RA1

assisted them to complete the baseline self-reported instruments. It took about 30 to 40

minutes to complete step 3. Also at this time the RA1 collected renal clinical data from

their medical record.

Step 4: each participant selected one of the opaque envelopes, opened it and gave their

number to the RA1. The RA1 checked the code number with the coding sheet to

randomly allocate the participant to either the control or intervention group. Those in the

intervention group were referred to the principal researcher by the RA1 (approximately 5

minutes).

Step 5: each participant in the intervention group was provided with a 60-minute face-to-

face session delivered by the principal researcher. Participants in the control group did

not attend this session.

Step 6: at weeks 8 and 16 the RA2 collected data from both groups.

As the renal outpatient clinics operate daily, the process was repeated every day (9 am to

4 pm, Monday to Friday) during the study time from November 2015 to June 2016.

108 Chapter 4: Methods


4.4.12 Data Management and Analysis

Data management

First, a coding manual for each variable of a participant’s outcome measure was

developed. Second, all returned outcome measures from the sample were reviewed by the

researcher before entering the data into SPSS to assess for missing data, any errors or

invalid response codes. Third, categorical variables (education, occupation, causes of

CKD, stage of CKD based on eGFR, etc.) were coded, and continuous values (age,

individual and family incomes, total V.KiKS, total V.CKD-SM, etc.) were entered.

Among these variables, eGFR required calculation before entering into SPSS. According

to the National Kidney Foundation (2015), eGFR was individually calculated for each

participant using age, gender, and serum creatinine level by using the CKD-EPI formula.

Then, 20% of the returned participant outcome measures were randomly checked for a

second time for any errors and unusual responses. The completed database was then

checked in SPSS, using frequency analysis to investigate any errors or missing numbers

and the distribution of all variables for normality. Following that, unusual responses, any

missing data, or errors in the data were checked with the original versions of participants’

outcome measures.

The results indicated that there were no missing items or errors in the socio-demographic

data, related renal characteristics, and outcome measures at all time points. However,

renal clinical test results showed several missing values because not all participants were

required to have testing at the time they participated in the study. Therefore, the common

available renal clinical data from all participants (eGFR, potassium, haemoglobin, BP,

urea, sodium, and blood glucose) were used.

Chapter 4: Methods 109


Data analysis

There were 135 participants involved in this study at baseline. However, 15 participants

dropped out because they started dialysis, did not complete the repeated measures, or

were not contactable. As a result, there were some missing values from these participants.

An intention-to-treat analysis was performed using the available outcome data from all

participants, as recommended in the literature (Gupta, 2011; Little & Kang, 2015; Polit &

Gillespie, 2009). Following Consolidated Standards of Reporting Trials (CONSORT)

2010 guidelines (Moher et al., 2010), data from 67 participants in the control group and

68 in the intervention group were included in the final analysis.

Participant responses in the outcome measures were scored before being entered into

IBM SPSS Statistics version 23 software. Descriptive statistics including histograms, Q-

Q Plots, boxplots, skewness and kurtosis were examined to evaluate normal distribution

of all continuous variables at baseline and each time point. Continuous variables with

normal distribution (age, BMI, eGFR, BP, etc.) were described as means (Ms) and

standard deviations (SDs), while medians (Mdn) and interquartile range (IQR) were used

to report those that were abnormally distributed (incomes, blood glucose, sodium, etc.).

Non-continuous variables were expressed in number (n) and percentage (%) (gender,

education, occupation, marital status, cause of CKD, etc.). Baseline characteristics were

compared for control and intervention groups, and lost to follow-up using independent t–

tests or Mann Whitney U tests for continuous variables. Chi-square or Fisher Exact tests

were used to examine any baseline differences in categorical variables.

Primary outcomes were knowledge (V.KiKS) and self-management behaviours (V.CKD-

SM), and secondary outcomes were self-efficacy (V.SECD), HRQoL (V.SF-36v2), and

BP control. Linear mixed models were used to test the effectiveness of the intervention at

110 Chapter 4: Methods


each time point and to test whether treatment interacts with time and group (Brown &

Prescott, 2015). There are three main reasons for using linear mixed models (LMM) to

analyse the results of this study. First, LMM is a standard method of analysing

longitudinal data, such as data from an RCT, because this method can incorporate both

fixed and random effects and permit different covariance structures (Peduzzi, Henderson,

Hartigan, & Lavori, 2002). Hence, it helps to examine how the response of the individual

participant changes over time. Second, the random effects allow covariate coefficients to

vary randomly from one individual participant to another, thereby providing a trajectory

response from each individual over time (Ma, Mazumdar, & Memtsoudis, 2012). Third,

LMM are models for non-ignorable missing data (Hesser, 2015; Peduzzi et al., 2002). In

this study, the missing data was not replaced because LMM include every data point

available and all participants were included in the data analysis at three time points.

Linear mixed models were used to examine the effectiveness of the self-management

intervention program on primary and secondary outcome variables between groups

(intervention vs. usual care control), and the interactions between group and time.

Outcome variables were first checked to meet the requirements to run the models, which

required residual analysis to ensure that the assumptions of the models needed to be valid.

Residuals were normally distributed, had a mean of zero, and had a constant variance

(Tabachnick & Fidell, 2013).

Group, time, and group × time were included in each of the models as fixed effects. In

order to account for correlation between patients’ repeated measures over time, patient-

level random effects were also included in each model. The group × time interaction was

examined to determine the overall treatment effects between groups over time. Each

variable of participants’ demographic characteristics at baseline was then adjusted to the

Chapter 4: Methods 111


model to compare with the unadjusted analyses.

Cohen’s d effect size was used to calculate the magnitude of the treatment effect of the

intervention group compared to the control group. Cohen’s d was calculated as the

difference between the means of intervention group (week 16) and control group

(baseline) divided by the pooled standard deviation (SDpooled). Values of Cohen’s d are

small, medium, and large effect (0.2, 0.5, and 0.8, respectively; Cohen, 1988).

4.5 Research Ethics

Ethics approval for the first two phases was obtained from Queensland University of

Technology Human Research Committee (Approval Number 1400000667) (see

Appendix 5) and permission from Bach Mai Hospital in Hanoi was sought (see Appendix

6). Ethics approval for Phase 3 (pRCT) was also obtained from Queensland University of

Technology Human Research Committee (Approval Number 1500000678) (see

Appendix 15) and permission from Bach Mai Hospital in Hanoi was sought (see

Appendix 16).

For the first two phases, the researcher explained the aims of the study, research

procedure, benefits, and safety of this study to participants before obtaining their consent.

In Phase 3, RA1 explained the purpose, methods, research procedure, benefits, and safety

of the pRCT to each participant before obtaining their consent. During all phases,

participants were assured that they had the right to refuse to participate or to withdraw

from the study at any time, and if they refused or withdrew from the project there would

be no effect on the healthcare they received. Confidentiality was assured, and no personal

information was disclosed to any other person. All data were stored in a secure area and

only utilised for the purpose of the research. The results were reported as group data, and

no names or other forms of identity were disclosed.

112 Chapter 4: Methods


The trial was also registered in the Australian New Zealand Clinical Trials Registry

(ANZCTR), recorded as ACTRN12616000038493 (see Appendix 17).

4.6 Chapter Summary

This chapter described the methods for all three phases of this PhD study. In Phase 1, the

translation process of two instruments was conducted. Phase 2 assessed the reliability of

these instruments and tested and retested these instruments. The aim of these phases was

to provide valid and reliable instruments in Vietnamese to measure the outcomes of Phase

3. Phase 3 was a pRCT of a 16-week CKD self-management intervention with

participants randomly assigned into one of 2 groups. The results of each phase are

presented in the next chapter.

Chapter 4: Methods 113


Chapter 5: Results

5.1 Introduction

The overall aim of this study was to test the effectiveness of the self-management

intervention program for people with CKD stages 3–5 in a Vietnamese sample. The self-

management program was guided by SCT. Prior to commencing the pRCT, preliminary

phases were required. Phase 1 translated and validated two instruments, the KiKS and

CKD-SM, from English into Vietnamese according to the processes described in the

previous chapter. Phase 2 involved the testing and retesting of the instruments for

psychometric properties. The final phase was the pRCT. All three phases were conducted

in Vietnam.

5.2 Phase 1 Results

5.2.1 Translation

The translation process of the two English versions of the KiKS and CKD-SM involved

four steps (see Figure 4.2). The translation process was completed by four bilingual nurse

academics who were each qualified at Master’s degree or higher, had a minimum of

English language capability of International English Language Testing System (IELTS)

6.5 or above, and had been involved in translating previous written material into

Vietnamese. In addition, they had many years of teaching experience in universities and

colleges in Vietnam.

Chapter 5: Results 115


5.2.2 Translation Process

Forward translation

The English versions of the two instruments were sent separately to two bilingual

translators to translate into Vietnamese. Then the Vietnamese versions were sent back to

the researcher for comparison to finalise the Vietnamese version, which involved

comparing words, phrases, and structures. The differences between the two versions were

discussed in a supervisor team meeting.

There were some problematic words or phrases in the forward-translated KiKS. These

were “đúng or không đúng” [correct or incorrect] used instead of “có or không” [yes or

no] for many of the answers because in Vietnamese this is the preferred way to answer a

closed-ended question. The phrase “chạy thận nhân tạo” [haemodialysis] (item 5) was

retained as it was in the original version and it is the most common form of dialysis

modality in Vietnam. The phrase “Sút cân (Giảm cân)” [weight loss] was also retained

because it is a common phrase. The comparison between the original, both translations,

and agreed terms of the KiKS are presented in Appendix 27.

The forward-translated CKD-SM also had some problematic words or phrases. For

example, “self-management” in the title of the instrument was translated into Vietnamese

as “tự quản lý [self-management]” by one translator and the other translator used “tự

chăm sóc [self-care]”. However, the phrase “tự quản lý [self-management]” was used

because the meaning is closer to the meaning of the [self-management] term. Other

problematic words were “dietitian” (item 8), which had been translated as “nhà dinh

dưỡng [nutritionist]” or “chuyên gia dinh dưỡng [nutritional specialist]”. The word

“pharmacist [dược sĩ]” (items 30 & 32) was deleted because medical practitioners

(doctors) or nurses provide this care for patients; and the word “health professionals”

116 Chapter 5: Results


(items 13, 15 & 17) is not used, so the phrase “bác sĩ và điều dưỡng [doctors or nurses]”

was used instead. Lastly the word “church [nhà thờ]” (items 24 & 28) was deleted

because the majority of people in Vietnam have no religion. In Vietnam, people believe

in ancestors-worship and almost all Vietnamese homes have an ancestors’ altar.

Ancestor-worship, while not a religion, is a belief which is embedded in the historical and

cultural traditions of Vietnamese which has been respected and acknowledged by the

communist government (Thuy & Hong, 2017). Appendix 28 contains the comparison

between the original, both translations, and agreed terms of the CKD-SM.

Back-translation

The draft Vietnamese versions of the KiKS and CKD-SM were then provided to a further

two bilingual translators, who were not involved in the forward translation, to translate

from Vietnamese back into English. These translators did not have access to the original

English versions. The back-translation process was similar to the forward translation

process. There were some problematic words and phrases identified in the back

translation, such as verb tense use and word choices. One translator used a singular verb

form for almost all of the questions while the other translator used a plural verb form.

Comparison of the English instrument and its back-translated version

The researcher reviewed and compared the back-translated versions of these instruments

with the original versions. Then the researcher made notes of any differences in word use,

phrases, sentence structures, and meanings to discuss in a supervisory team meeting. The

differences in word use, tense, and phrase were adjusted to achieve meanings close to

those of the original version. The comparisons of the two back-translated versions of the

KiKS and CKD-SM can be found in Appendices 29 and 30, respectively. Both translated

versions of the CKD-SM and KiKS were now ready to be validated by an expert panel.

Chapter 5: Results 117


5.2.3 Instrument Validation Results

Content validity and instrument readability assessments

To assess content validity of the translated KiKS and CKD-SM, 10 people were invited to

review the instruments. The demographic characteristics of the panel members are

presented in Table 5.1. Each panel member separately scored each item and sub-item

between 1–4 for relevance (1 = not relevant, 2 = major change to be relevant, 3 = minor

change to be relevant, 4 = very relevant), clarity (1 = not clear, 2 = major change to be

clear, 3 = minor change to be clear, 4 = very clear), and appropriateness and adequacy

(1 = not appropriate, 2 = major change to be appropriate, 3 = minor change to be

appropriate, 4 = very appropriate). Comprehensiveness was scored as either 1 or 2 (1 =

should be deleted, 2 = should be retained) (see Appendix 31). Panel members were also

asked to provide their comments on any item that they thought should be revised to be

made clearer, simpler, or easier for people with low literacy levels (see Appendix 32).

Table 5.1. Demographic Characteristics of Expert Panel

Occupation Age Gender


Renal medical practitioner 34 Male
Renal nurse 51 Female
Renal nurse 48 Female
General medical practitioner 26 Female
General registered nurse 23 Female
General registered nurse 23 Female
Primary school level teacher 39 Male
Primary school level teacher 42 Male
Home worker 58 Female
Home worker 57 Female

118 Chapter 5: Results


Scale and item content validity average

The results for scale and item content validity average (S-CVI/Ave) and instrument

readability are presented in Tables 5.2. The panel members rated 28 items of the

translated KiKS and 32 items of the translated CKD-SM. The data generated from the

panel review of both instruments was used to calculate the scale and item content validity

(S-CVI). The S-CVI/Ave of each instrument was calculated as an average of the item-

level content validity (I-CVI) by summing the rating and dividing by the number of items

(Polit & Yang, 2016). The recommended standard for the S-CVI/Ave should be .90 or

higher (Polit & Yang, 2016). In this study, the overall S-CVI/Ave (content validity and

readability) of the translated KiKS was .97 and the translated CKD-SM was .99. These

results indicate that the translated KiKS and translated CKD-SM instruments achieved

sufficient content validity in regard to relevance, clarity, comprehensiveness,

appropriateness, and adequacy. Thus, both instruments demonstrated good content

validity.

Table 5.2. Scale and Item Content Validity Average of Instrument Variables for Content
Validity and Readability

Variables Relevance Clarity Comprehensiveness Adequacy Overall

V.KiKS: .97 .98 .97 .97 .97


S-CVI/Ave

V.CKD-SM: 1.00 1.00 .98 1.00 .99


S-CVI/Ave

Abbreviations: S-CVI/Ave, Scale and item content validity average; V.KiKS, Vietnamese Kidney disease
knowledge instrument; V.CKD-SM, Vietnamese Chronic kidney disease self-management instrument.

Chapter 5: Results 119


In addition, the panel members’ written comments about problematic words and phrases

were collated and then discussed with the supervisory team. Appendix 32 presents the

problematic words and the outcomes from the discussions with the supervisory team. The

final Vietnamese versions of both the KiKS and CKD-SM were then ready for

psychometric testing (Phase 2). Both Vietnamese versions of the CKD-SM and KiKS are

referred as the V.CKD-SM and V.KiKS, respectively in the remainder of this thesis.

5.3 Phase 2 Results

Phase 2 used a test/retest design conducted at one nephrology department in which a total

of 158 participants were recruited. Of these, 70 participants agreed to complete the retest,

and of these 52 returned both instruments and 18 participants return only one instrument.

It is unknown why both instruments were not returned, and because no participant

telephone numbers were obtained, no further follow-up occurred. Figure 5.1 summarises

the Phase 2 research process.

Informed consent for testing instruments (n = 158)

Agreed to complete retest (n = 70)

Excluded due to missing data (n = 18)

Completed retest (n = 52)

Figure 5.1. Phase 2 research process.

120 Chapter 5: Results


5.3.1 Sample Characteristics

There was a nearly equal distribution between males (48.7%) and females (51.3%).

Participant ages ranged from 18 to 84 years (M = 44.0, SD = 16.2). Among these

participants, the majority of them were between the ages of 20 and 39 (40.5%) and only

one participant (0.6%) was over 80 years of age. Most of the participants (88.6%) were

married. Participants who had completed primary school, secondary school, and high

school comprised 24.1%, 40.5%, and 23.4% of the total, respectively. The occupation of

the majority of participants was farmer (43.7%). The average monthly individual income

and monthly family income ranged from 0 to 10 million VND/month (M = 2.74, SD =

1.6) and 0.5 to 17.5 million VND/month (M = 6.10, SD = 3.16), respectively. Of those

participants who had no income, they were either farmers or home workers. The majority

of participants lived with three to four family members (62.1%). Participant

characteristics are summarised in Table 5.3.

Chapter 5: Results 121


Table 5.3. Demographic Characteristics of Participants

Characteristics n %

Age (years), range: 18–84, M (SD) 44.0 (16.2)

≤ 19 5 3.2

20–39 64 40.5

40–59 52 32.9

60–79 36 22.8

≥ 80 1 0.6

Gender

Male 77 48.7

Female 81 51.3

Marital status

Married 140 88.6

Single 15 9.5

Widowed 2 1.3

Divorced 1 0.6

Education

Primary school 38 24.1

Secondary school 64 40.5

High school 37 23.4

Certificate degree (2 years) 5 3.1

Certificate degree (3 years) 2 1.3

Bachelor degree 12 7.6

Occupation

Officer and officer worker 12 7.6

Farmer 69 43.7

122 Chapter 5: Results


Characteristics n %

Industrial worker 19 12.0

Seller 26 16.5

Home worker 5 3.1

Retired 18 11.4

Other jobs 9 5.7

Monthly individual income (million VND), range: 0–10, M (SD) 2.74 (1.6)

< 1.5 40 25.3

1.5–3.0 47 29.8

3.1–4.5 53 33.5

4.6–6.0 12 7.6

≥ 6.1 6 3.8

Monthly family income (million VND), range: 0.5–17.5, M (SD) 6.1 (3.16)

< 3.0 16 10.1

3.0–6.0 65 41.1

6.1–9.0 54 34.2

9.1–12.0 14 8.9

≥ 12.1 9 5.7

Number of family members, range: 1–11, M (SD) 4.15 (1.35)

≤ 2 people 10 6.3

3–4 people 98 62.1

5–6 people 44 27.9

≥7 6 3.7

Note. N = 158.
Abbreviations: M, Mean; SD, Standard deviation; VND, Viet Nam Dong.

Chapter 5: Results 123


5.3.2 Renal Clinical Characteristics

More than half of the participants were in CKD stage 5 but not yet receiving dialysis (n =

86; 54.4%), while the rest were in stage 1 (5.7%), stage 2 (9.5%), stage 3A (3.8%), stage

3B (3.2%), and stage 4 (9.5%). Approximately 14% of the participants were receiving

dialysis. Only 25.9% had a normal BP of < 120/80 mmHg. Other clinical data included

cholesterol, HbA1c, potassium, calcium, phosphate, haemoglobin (Hb), body mass index

(BMI), and total number of medications (see Table 5.4). All participants had eGFR, BP,

potassium, Hb and BMI recorded in their hospital records. However, there were large

numbers who had not been tested for cholesterol, HbA1c, calcium, and phosphate. The

majority (n = 109; 69%) had a normal serum potassium level. The BMI results indicated

that more than half of the participants (n = 104; 65.8%) had a normal weight and only 15

(9.5%) had a BMI level greater than 25. Nearly two thirds of the participants (n = 98;

62%) had an Hb level lower than 100 g/L, and around 67% (n = 105) had a low serum

calcium level. In regard to the total number of medications prescribed, 26 (16.4%) had to

take at least three different types of medication, 102 (64.6%) took between four and six

medications, and 30 (19%) were prescribed more than seven different types of

medication.

124 Chapter 5: Results


Table 5.4. Renal Clinical Characteristics

Clinical test results n %


CKD Stage [eGFR (mL/min/1.73 m²)], M (SD) 23.65 (30.27)
Stage 1 (≥ 90) 9 5.7
Stage 2 (60–89) 15 9.5
Stage 3A (45–59) 6 3.8
Stage 3B (30–44) 5 3.2
Stage 4 (15–29) 15 9.5
Stage 5 (< 15) 86 54.4
Stage 5D 22 13.9
Blood pressure (mmHg)
< 120/80 41 25.9
120–139/80–89 66 41.8
140–159/90–99 37 23.4
≥ 160/100 14 8.9
Haemoglobin (g/L), M (SD) 97.57 (21.6)
< 100 98 62.0
100–120 38 24.1
> 120 22 13.9
Potassium (mmol/L), M (SD) 3.88 (0.69)
< 3.5 43 27.2
3.5–5.0 109 69.0
> 5.0 6 3.8
Cholesterol (mmol/l), M (SD) 6.38 (3.69)
< 3.6 14 8.9
3.6–5.2 49 31.0
> 5.2 49 31.0
No test 46 29.1
HbA1c (%), M (SD) 5.89 (1.03)
4.2–6.4 12 7.6
> 6.4 5 3.2
No test 141 89.2
Calcium (mmol/L), M (SD) 2.05 (0.29)
< 2.2 105 66.5

Chapter 5: Results 125


Clinical test results n %
2.2–2.6 37 23.4
> 2.6 3 1.9
No test 13 8.2
Phosphate (mmol/L), M (SD) 1.9 (0.53)
< 1.45 6 3.8
1.45–1.9 17 10.8
> 1.9 15 9.5
No test 120 75.9
BMI, M (SD) 21.12 (3.4)
< 18.5 39 24.7
18.5–24.9 104 65.8
25–29.9 11 7.0
≥ 30 4 2.5
Medications used
≤3 26 16.4
4–6 102 64.6
≥7 30 19.0
Note. N = 158.
Abbreviations: M, Mean; SD, Standard deviation; eGFR, estimated glomerular filtration rate; D, dialysis;
HbA1c, Glycosylated haemoglobin; BMI, Body mass index.

126 Chapter 5: Results


5.3.3 Instrument Summary Results

The maximum possible total score of the V.KiKS is 28. In this study, the scores ranged

from 11 to 23 (M = 17.67, SD = 2.61). For the V.CKD-SM, the possible minimum and

maximum scores were 32 and 128, respectively. In this study, the scores ranged from 47

to 115 (M = 72.20, SD = 10.17) (see Table 5.5).

Table 5.5. Means and Standard Deviations for two Instruments

Instruments Number of items Potential range Actual range M (SD)

V.KiKS 28 0–28 11–23 17.67 (2.61)

V.CKD-SM 32 32–128 47–115 72.20 (10.17)

Note. N = 158
Abbreviations: M, Mean; SD, Standard Deviation; V.KiKS, Vietnamese Kidney disease knowledge
instrument; V.CKD-SM, Vietnamese Chronic kidney disease self-management instrument.

5.3.4 Instrument Responses

A summary of those participants who responded correctly to each of the V.KiKS items is

presented in Table 5.6. The five highest items answered correctly were item 19 (99.4%),

item 2 (98.7%), item 10 (98.7%), item 11 (96.8%), and item 7 (96.2%). However, more

than 80% of participants did not know why it is not good for the kidneys when there is

too much protein in the urine (item 3). The majority of participants could not identify one

medication from the list that they should avoid (item 4), what “eGFR” stood for (item 6),

blood glucose (item 16), and the fact that some people with CKD may have no symptoms

at all (item 28). None of the participants were informed of the results of the first test

scores of the V.KiKS.

A summary of participant responses to the V.CKD-SM is presented in Table 5.7. Items

having the highest mean scores included item 8 (M = 3.06, SD = 0.59), item 17 (M = 3.54,

Chapter 5: Results 127


SD = 0.58), item 27 (M = 3.29, SD = 0.59), and item 30 (M = 3.42, SD = 0.53). By

contrast, items with the lowest mean scores included item 2 (M = 1.63, SD = 0.70), item 5

(M = 1.37, SD = 0.53), item 6 (M = 1.60, SD = 0.62), item 16 (M = 1.66, SD = 0.73), item

29 (M = 1.58, SD = 0.66), and item 32 (M = 1.65, SD = 0.69). None of the participants

were informed of the results of the first test scores of the V.CKD-SM.

128 Chapter 5: Results


Table 5.6. Vietnamese Kidney Disease Knowledge Correct Results

Items Correct
(%)

1 On average, your blood pressure should be maintained 76.6

2 Are there certain medications your doctor can prescribe which is useful 98.7
for your kidneys?

3 Why it is not good for kidneys when there is too much protein in the 17.1
urine?

4 Select the ONE MEDICATION from the list below that a person with 5.1
CHRONIC kidney disease should AVOID:

5 If the kidney(s) fail, treatment might include (FOR THIS QUESTION 86.7
you can CHOOSE up to TWO ANSWERS):

6 What does “GFR” stand for? 8.9

7 Does CHRONIC kidney disease have different stages? 96.2

8 Does CHRONIC kidney disease increase risks of heart attack for 86.1
people?

9 Does CHRONIC kidney disease increase risks of mortality for people? 94.9

This part will ask about WHAT KIDNEY DOES. Please choose one answer for
each of the following questions

10 Does the kidney make urine? 98.7

11 Does the kidney clean blood? 96.8

12 Does the kidney keep bones healthy? 54.4

13 Does the kidney keep a person from losing hair? 47.5

14 Does the kidney help keep red blood cell counts normal? 91.1

15 Does the kidney help keep blood pressure normal? 89.2

16 Does the kidney help keep blood glucose normal? 19.0

17 Does the kidney help keep potassium levels in the blood normal? 45.6

18 Does the kidney help keep phosphorus levels in the blood normal? 38.6

Chapter 5: Results 129


Items Correct
(%)
This section is about SYMPTOMS. Please select from the list, all of the symptoms a
person might have if they have chronic kidney disease or kidney failure.

19 Increased fatigue? 99.4

20 Shortness of breath? 91.8

21 Metallic taste / bad taste in the mouth? 79.7

22 Abnormal itching? 60.1

23 Nausea and/or vomiting? 86.1

24 Hair loss? 46.2

25 Increased difficulty in sleeping? 91.8

26 Weight loss? 32.3

27 Confused? 21.5

28 No symptoms at all? 7.0

Note: N = 158

130 Chapter 5: Results


Table 5.7. Vietnamese Chronic Kidney Disease Self-Management Responses Results

Items M SD

Factor 1: Self-integration

7 To prevent the increased workload on my kidneys, I am able to control what I eat 2.96 0.57

8 I follow the diet which was recommended by my doctors or nurses. 3.06 0.59

11 I integrate closely my treatment of kidney disease into my daily life 2.41 0.57

12 I quit habits which worsen my kidney function (for example smoking, drinking alcohol, salty diet) 2.54 0.63

15 I follow health professionals’ recommendations about eating a balanced diet. 2.93 0.55

17 I follow health professionals’ recommendations about not smoking 3.54 0.58

18 I have changed my lifestyle to prevent my kidney disease from getting worse 2.47 0.56

20 I keep my kidney healthy by keeping my general health condition 2.44 0.52

21 I stop bad habits which might harm my kidneys (for example: smoking, eating salty food, drinking) 2.58 0.65

25 I can adjust my daily activities based on my kidney disease treatment plan when I am not at home (for 2.28 0.49
example: on travel, retreat)

28 I feel I am able to attend social activities (wedding, party), even though I have kidney disease. 2.19 0.47

Chapter 5: Results 131


Factor 2: Problem solving

2 I will ask about the reasons which might cause the decrease of my kidney function 1.63 0.70

5 I understand results of laboratory tests which were used to evaluate my kidney’s function (for example: 1.37 0.53
creatinine, eGFR)

6 When my blood pressure increases (more than 140/90), I try to find out any possible cause for this. 1.60 0.62

9 I solve problems related to my kidney disease by using different sources of information (for example: 1.58 0.68
calling my doctors or nurses, using internet, Google, group of supporting patients with kidney diseases)

14 I monitor my early warning signs and symptoms (for example: blood glucose, weight, shortness of breath, 2.11 0.59
foot swelling)

16 I asked doctors or nurses questions to understand clearly the plan of treating my kidney disease 1.66 0.73

22 I take steps to understand the risk factors associated with chronic kidney disease (such as high blood 1.98 0.44
pressure, diabetes, smoking, obesity).

26 When my body has new or worsen symptoms (for example: foot swelling, severe headache, urinate 2.11 0.47
frequently at night), I tried to find reasons

29 I search for information about chronic kidney disease from different sources (for example internet, leaflet, 1.58 0.66
manual, kidney disease patient peer group)

31 I take action when my early warning signs and symptoms get worse 2.16 0.54

32 When I have questions about my kidney disease, I discuss what to do with my doctors or nurses. 1.65 0.69

132 Chapter 5: Results


Factor 3: Seeking social support

1 When I have questions of my kidney disease, I discuss what I have to do with my family and friends 2.25 0.57

3 I inform my family and friends about my kidney treatment plan (such as, medications changes, lifestyle 1.89 0.54
changes).

4 I share my personal experience about kidney disease with other kidney disease patients 1.97 0.58

10 When I feel uncomfortable or disappointed, I discussed with someone about my emotion 1.98 0.46

19 I seek help from others when I am feeling upset or frustrated. 2.04 0.53

Factor 4: Adherence to recommended regimen

13 I follow healthcare professionals’ recommendations of doing exercises 1.85 0.64

23 I control my weight based on doctors or nurses’ advice 2.37 0.64

24 I make good choices about the type and amount of food I eat when I am not at home (for example: in 2.28 0.55
restaurant, party, eating out)

27 I still take all of my medications even when I am not at home 3.29 0.59

30 I take my medications as prescribed by my doctors. 3.42 0.53

Note. N = 158
Abbreviations: M, Mean; SD, Standard deviation.

Chapter 5: Results 133


5.3.5 Instrument Reliability

Reliability testing used the Kuder-Richardson-20 (KR20) for the KiKS and Cronbach’s

alpha for the V.CKD-SM and V.CKD-SM’s subscales. The KR20 of the V.KiKS was .58

compared to the English KiKS (E.KiKS) of .72 (Wright et al., 2011). The Cronbach’s

alpha of V.CKD-SM was .93 compared to the original version of .95 (Lin et al., 2012).

The subscale coefficients of the V.CKD-SM alphas ranged from .67 to .87, compared to

the originals which ranged from .77 to .92. The results of the reliability of these two

instruments and the subscales of the V.CKD-SM are presented in Table 5.8.

134 Chapter 5: Results


Table 5.8. Summary of Internal Reliability for Instrument Variables and Subscale
Variables

Variables Subscales KR20 Cronbach’s α

English KiKSª .72

V.KiKSᶜ .58

Original CKD-SMᵇ .95

Self-integration .92

Problem-solving .91

Seeking social support .84

Adherence to recommended regimen .77

V.CKD-SMᶜ .93

Self-integration .87

Problem-solving .87

Seeking social support .67

Adherence to recommended regimen .67

Note. ª N = 401; ᵇ N = 252; ᶜ N = 158.


Abbreviations: V.KiKS, Vietnamese Kidney disease knowledge instrument; V.CKD-SM, Vietnamese
Chronic kidney disease self-management instrument; English KiKS (Wright et al., 2011); Original CKD-
SM (Lin et al., 2012); KR20, Kuder-Richardson-20.

5.3.6 Test/Retest Reliability

In this study, 52 participants completed the test/retest to measure the stability of the

instrument (i.e., reliability). None of the 52 participants were informed of the V.KiKS and

V.CKD-SM scores after completing either the first test or the retest.

Consistency testing of the V.KiKS and V.CKD-SM used ICC, a two-factor, mixed-effects

model and type of absolute agreement, to assess the degree of reliability. The ICC index

should be above .70 (McGraw & Wong, 1996; Shrout & Fleiss, 1979). The ICC for the

Chapter 5: Results 135


V.KiKS was .82 (p < .01) and for the V.CKD-SM was .84 (p < .01). There was not much

variability between the test and retest of the two instruments. The responses from 52

participants to both instruments seem to be consistent and relative to one another. The

V.KiKS and V.CKD-SM 95% confidence intervals (CIs) were [0.68, 0.90] and [0.78,

0.89], respectively. The ICC results are presented in Table 5.9.

Table 5.9. Intra-class Correlation Coefficients for Instrument Variables

Variables 95% CI
ICC
LL UL

V.KiKS .82 0.68 0.90

V.CKD-SM .84 0.78 0.89

Note. n = 52; All coefficients are significant at p < .01.


Abbreviations: V.KiKS, Vietnamese Kidney disease knowledge instrument; V.CKD-SM, Vietnamese
Chronic kidney disease self-management instrument; ICC, Intra-class correlation coefficient; CI,
Confidence interval; LL, Lower limit; UL, Upper limit.

5.3.7 Pair Items Correlations

Pair items correlations of the V.KiKS and V.CKD-SM instruments are described in

Tables 5.10 and 5.11, respectively. In the V.KiKS, 8 pairs (items 2, 3, 7, 10, 11, 20, 21,

and 28) could not be computed because the standard error of the difference was zero (see

Table 5.10). The remaining nine pairs of the V.KiKS had a correlation coefficient less

than .70. Twenty-eight pair items of the V.CKD-SM had a correlation coefficient greater

than .70, with a significance level less than .01 (see Table 5.11). Only four pairs of the

V.CKD-SM had a correlation coefficient less than .70.

136 Chapter 5: Results


Table 5.10. Paired Samples Correlations for Vietnamese Kidney Disease Knowledge
Pairs M SD Correlation
Pair 1 -0.38 0.19 .91**
Pair 2 ª
Pair 3 ª
Pair 4 0.19 0.14 .90**
Pair 5 -0.19 0.14 .94**
Pair 6 0.19 0.14 .92**
Pair 7 ª
Pair 8 0.77 0.33 .59**
Pair 9 0.38 0.28 .32*
Pair 10 ª
Pair 11 ª
Pair 12 0.12 0.32 .79**
Pair 13 -0.21 0.46 .54**
Pair 14 0.04 0.19 .85**
Pair 15 0.08 0.27 .63**
Pair 16 -0.08 0.33 .68**
Pair 17 0.17 0.43 .63**
Pair 18 0.17 0.47 .53**
Pair 19 -0.02 0.14
Pair 20 ª
Pair 21 ª
Pair 22 0.06 0.31 .79**
Pair 23 -0.02 0.14 .91**
Pair 24 -0.15 0.50 .46**
Pair 25 0.00 0.28 .62**
Pair 26 0.06 0.37 .73**
Pair 27 0.04 0.34 .71**
Pair 28 ª
Note. n = 52; ª The correlation cannot be computed because the standard error of the difference is 0;
* significant at p < .05; ** significant at p < .01
Abbreviations: M, Mean; SD, Standard deviation

Chapter 5: Results 137


Table 5.11. Paired Samples Correlations for Vietnamese Chronic Kidney Disease Self-
Management

Pairs M SD Correlation

Pair 1 -0.04 0.28 .92**

Pair 2 0.12 0.38 .90**

Pair 3 0.02 0.14 .98**

Pair 4 0.04 0.19 .97**

Pair 5 -0.02 0.14 .98**

Pair 6 0.21 0.46 .80**

Pair 7 0.02 0.24 .92**

Pair 8 0.08 0.33 .87**

Pair 9 0.02 0.14 .99**

Pair 10 0.08 0.27 .91**

Pair 11 0.08 0.27 .92**

Pair 12 0.19 0.40 .87**

Pair 13 0.06 0.24 .95**

Pair 14 0.02 0.14 .98**

Pair 15 -0.04 0.19 .95**

Pair 16 -0.06 0.31 .93**

Pair 17 -0.06 0.46 .61**

Pair 18 0.04 0.19 .96**

Pair 19 -0.04 0.28 .92**

Pair 20 0.00 0.20 .94**

Pair 21 0.10 0.30 .93**

Pair 22 -0.04 0.19 .95**

Pair 23 0.12 0.38 .84**

Pair 24 0.02 0.37 .86**

138 Chapter 5: Results


Pairs M SD Correlation

Pair 25 -0.02 0.31 .85**

Pair 26 -0.02 0.37 .79**

Pair 27 -0.08 0.65 .53**

Pair 28 0.00 0.40 .69**

Pair 29 0.04 0.39 .86**

Pair 30 0.00 0.59 .47**

Pair 31 0.17 0.47 .78**

Pair 32 0.02 0.46 .81**

Note. n = 52; ** All pairs significant at p < .01


Abbreviations: M, Mean; SD, Standard deviation

Chapter 5: Results 139


5.3.8 Testing Normal Distribution of Outcome Variables

The Kolmogorov-Smirnov was used to test for a normal distribution of outcome variables

for the V.KiKS, V.KiKS (retest), V.CKD-SM, and V.CKD-SM (retest), and the results

are presented in Table 5.12. According to Pallant (2013), a non-significant result (p ≥ .05)

indicates a normal distribution. The results from Table 5.12 showed that the scores of the

V.CKD-SM and V.CKD-SM (retest) were normally distributed, while the scores of the

V.KiKS and V.KiKS (retest) were not normally distributed (p < .05).

Table 5.12. Testing Normal Distribution of Instrument Variables

Variables M SD Kolmogorov-Smirnov
p

V.KiKSᶜ 17.67 2.61 < .01

V.KiKSᵈ (retest) 17.42 2.16 .02

V.CKD-SMᶜ 72.20 10.17 .05

V.CKD-SMᵈ (retest) 75.67 10.78 .20

Note. ᶜ n = 158. ᵈ n = 52; significant p < .05


Abbreviations: V.KiKS, Vietnamese Kidney disease knowledge instrument; V.CKD-SM, Vietnamese
Chronic kidney disease self-management instrument; M, Mean; SD, Standard deviation.

5.3.9 Correlation between Test and Retest

The correlation between the V.CKD-SM (test) and V.CKD-SM (retest) was measured

using Pearson correlation. There was a significant relationship between the V.CKD-SM

(test) and V.CKD-SM (retest) (r = .98, p < .01). The correlation result of the V.CKD-SM

was unusually high, and this may be due to the short interval of the test/retest period,

therefore, participants might have tried to remember how they answered in the test and

responded again in the retest.

140 Chapter 5: Results


5.3.10 Comparison of Outcome Variables Results by Demographic Characteristics

Vietnamese kidney disease knowledge

The Mann-Whitney U Test was used to compare the V.KiKS scores for demographic

characteristics and results which are shown in Table 5.13. This test is used to measure for

differences between two independent groups on a continuous measure (Pallant, 2013).

As shown in Table 5.13, participants with higher skilled jobs (Mdn = 20, n = 12) had

more kidney knowledge than those with lower skilled jobs (Mdn = 17, n = 146) and this

was statistically significant (U = 457, z = -2.77, p < .05). There were no statistical

differences in CKD knowledge by age, gender, education, individual income, family size,

CKD stage, and number of medications.

Chapter 5: Results 141


Table 5.13. Results of Mann-Whitney U Test for Vietnamese Kidney Knowledge Variable by Demographic Characteristics

Variables n Mdn U z p
Age ≤ 55 years 117 18 2135 -1.05 .29
> 55 years 41 17
Gender Male 77 17 2999 -0.42 .68
Female 81 18
Education Level 1 to 9 103 17 2372 -1.69 .09
Level 10 and above 55 18
Occupation High skilled jobs 12 20 457 -2.77 .01
Low skilled jobs 146 17
V.KiKS
Individual income ≤ 3.0 million VND 106 17 2335 -1.57 .12
> 3.0 million VND 52 18
Family size ≤ 3 people 48 18.50 2194 -1.70 .09
≥ 4 people 110 17
CKD Stage Stages 1–4 50 18 2442 -0.97 .33
Stages 5 and 5D 108 17
Medication ≤ 3 types of medication 114 18 2075 -1.69 .09
≥ 4 types of medication 44 17
Note. N = 158; significant p < .05
Abbreviations: Mdn, Median; V.KiKS, Vietnamese Kidney disease knowledge instrument; VND, Viet Nam Dong.

142 Chapter 5: Results


Vietnamese chronic kidney disease self-management

The independent sample t–tests were used to compare mean scores of the V.CKD-SM by

demographic characteristics (see Table 5.14). This test is used to assess differences in

mean scores between the groups (Pallant, 2013).

As shown in Table 5.14, participants aged ≤ 55 years (M = 73.30, SD = 10.70) reported

greater self-management behaviours than those aged over 55 (M = 69.05, SD = 7.77) and

this was statistically significant (t(156) = 2.72, p = .01). Participants who completed high

school or above (M = 76.87, SD = 10.89) reported greater self-management behaviours

than those with lower high school qualifications (M = 69.70, SD = 8.86). Those in highly

skilled jobs (M = 86.00, SD = 12.18) experienced better self-management behaviours than

those in lower skilled jobs (M = 71.06, SD = 9.15). Participants with an income over 3

million VND per month (M = 76.65, SD = 10.86) had greater self-management

behaviours than those with income equal to or less than 3 million VND per month (M =

70.01, SD = 9.10). All of these variables (education, occupation, and individual monthly

income) were all statistically significant (ps < .01). There were no other statistical

differences in self-management behaviours by gender, number of family members, CKD

stage, or number of medications.

Chapter 5: Results 143


Table 5.14. Results of t–tests for Vietnamese Chronic Kidney Disease Self-Management Variables by Demographic Characteristics

Variables n M (SD) Mean difference [95% CI] t(156) p


Age ≤ 55 years 117 73.30 (10.70) 4.25 [1.14, 7.35] 2.72 .01
> 55 years 41 69.05 (7.77)
Gender Male 77 70.57 (9.13) -3.17 [-6.34, .00] -1.98 .05
Female 81 73.74 (10.91)
Education Level 1 to 9 103 69.70 (8.86) -7.17 [-10.34, -4.00] -4.47 < .01
Level 10 and above 55 76.87 (10.89)
Occupation High skilled jobs 12 86.00 (12.18) 14.94 [9.37, 20.51] 5.30 < .01
Low skilled jobs 146 71.06 (9.15)
V.CKD-SM
Individual ≤ 3.0 million VND 106 70.01 (9.10) -6.64 [-9.89, -3.40] -4.04 < .01
income > 3.0 million VND 52 76.65 (10.86)
Family size ≤ 3 people 48 73.48 (12.42) 1.84 [-2.12, 5.81] 0.93 .36
≥ 4 people 110 71.64 (9.03)
CKD Stage Stages 1–4 50 72.94 (11.88) 1.09 [-2.35, 4.53] 0.62 .53
Stages 5 and 5D 108 71.85 (9.32)
Medication ≤ 3 types of medication 114 73.14(10.26) 3.39 [-0.15, 6.92] 1.89 .06
≥ 4 types of medication 44 69.75 (9.62)
Note. N = 158; significant p ≤ .01
Abbreviations: M, Mean; SD, Standard deviation; t, t value from the t–tests; CI, confidence interval; V.CKD-SM, Vietnamese Chronic kidney disease self-management
instrument; eGFR, estimated glomerular filtration rate; VND, Viet Nam Dong.

144 Chapter 5: Results


5.3.11 Feasibility of Using Two Instruments

Vietnamese version of kidney disease knowledge instrument

The V.KiKS instrument has 28 items and was administered to 158 people with CKD in

Vietnam. The time taken to complete this instrument was about 10 to 15 minutes. Each

item was scored as 1 = correct, or 0 = incorrect. With regard to the results of Mann-

Whitney U test of the V.KiKS, the results indicated that there was a significant difference

in the V.KiKS scores between people with highly skilled jobs and those with lower

skilled jobs, while those who had completed fewer than nine years of schooling and those

who had completed more than nine years of schooling was nearly significantly different

(p = .09) (see Table 5.13). High skilled jobs appeared to be related to greater levels of

kidney disease knowledge, and this finding could be due to those who have more

education having a greater chance to work as professionals. Working in these jobs may

have made it easier to search for information on the internet to understand more about

kidney disease. Item 6 [What does ‘eGFR’ stand for] contains a medical term requiring it

to be explained to improve clarity for people with low health literacy level.

Vietnamese version of chronic kidney disease self-management instrument

The V.CKD-SM instrument has 32 items and was also administered to 158 people with

CKD in Vietnam. The total time required to complete this instrument varied from 15 to

20 minutes. The 4-point Likert scale ranged from 1 (never) to 4 (always). Most of the

questions were not difficult for participants to answer. However, some phrases, such as

maintaining my overall health [giữ gìn sức khoẻ chung], controlling [kiểm soát], integrate

closely [kết hợp chặt chẽ], changed lifestyle [thay đổi lối sống], take steps [thực hiện các

Chapter 5: Results 145


bước], and take action [thực hiện hành động] were not clear to older participants. The

researcher provided examples of what was meant.

The results of the t–tests for the V.CKD-SM by demographic characteristics showed

above indicated that there were significant differences in the V.CKD-SM scores by age,

education, occupation, and individual income (p < .05). Gender was also closely

significantly different (p = .05) (see Table 5.14). The results revealed that people who

were younger, who had completed more than nine years of schooling, people with highly

skilled jobs, and people with high incomes had higher V.CKD-SM scores. In the Vietnam

context, these people often live in urban areas or better environments where health

authorities can provide sufficient facilities and resources for people who need to perform

self-management skills. Therefore, the findings from Phase 1 and Phase 2 indicated that

the demographic variables including age, gender, education, occupation, and individual

income may become confounding variables, which should be carefully determined in

Phase 3.

146 Chapter 5: Results


5.4 Phase 3 Results

This phase comprised a pRCT of a CKD self-management intervention program. The

research hypotheses were:

1. Participants who receive a self-management intervention will have greater self-

reported knowledge, self-reported self-efficacy, and self-reported self-

management behaviour compared to those receiving standard care in a hospital

renal clinic.

2. Participants who receive a self-management intervention will have better blood

pressure control and self-reported health-related quality of life compared to those

receiving standard care in a hospital renal clinic.

The pRCT used two patient-reported outcome measures which had been translated and

psychometrically evaluated during the previous two phases of this study. The pRCT was

also conducted in Bach Mai Hospital, Hanoi City, Vietnam (see Chapter 4).

5.4.1 Participant Flow

Flyers were distributed to people with CKD attending the clinics (n = 1,103) with 148

people self-identifying to the nurse as being interested in the study and accordingly

assessed for eligibility; however, 13 were excluded. Thus, a total of 135 agreed to

participate in the study. Baseline data were collected and participants were randomly

assigned to either the intervention group (n = 68) or control group (n = 67) (see Table

5.15).

Chapter 5: Results 147


Table 5.15. Information Required to Document the Flow of Participants through each Stage of the Main Study
Stage Number of people Number of people not Reasons for not included or excluded Number
included included or excluded
Enrolment 148 13 Not in stages 3–5 of CKD 10
Difficulty with speaking because of the consequence of stroke 1
Declined to participate because of the time requirements 2
Randomisation 135 0 A minimum of 134 participants were required; however, within
the time frame for data collection 135 participants recruited to
the trial.
Treatment 68 intervention group 0
allocation 67 control group 0
61 intervention group 7 Commenced dialysis at week 8 2
Did not complete the repeated measures at week 16 because 2
Follow-up unwell
Not contactable at week 16 3
59 control group 8 Commenced dialysis at week 8 2
Commenced dialysis at week 16 1
Did not complete the repeated measures at week 16 because 3
unwell and sudden fatigue
Not contactable at week 16 2
Analysis 68 intervention group 0
67 control group 0

148 Chapter 5: Results


Figure 5.2 presents the CONSORT flow diagram of the study. Of these in the intervention

group, 61 completed the study and seven did not. Of those in the control group, 59

completed the study and eight did not. Those who did not complete the study were

unwell, uncontactable, or reported being too fatigued to complete the repeated measures.

The high retention rate in both groups was maintained because all patients returned to the

clinics every 4 to 12 weeks depending on their condition to have repeated blood tests,

obtain oral medications and to have their clinical tests reviewed by a renal medical

practitioner.

Chapter 5: Results 149


Assessed for eligibility
Enrollment
(n = 148) Excluded (n = 13)
 Not meeting inclusion
criteria (n = 11)
 Declined to participate
(n = 2)
 Other reasons (n = 0)
Randomised (n = 135)

Allocated to standard care Allocated to intervention


Allocation
group (n = 67) (n = 68)
 Receive allocated standard  Received allocated
care (n = 67) intervention (n = 68)
 Did not receive allocated  Did not receive allocated
standard care (n = 0) intervention (n = 0)

Lost to follow-up (n = 8) Follow up Lost to follow-up (n = 7)


 Commenced dialysis during  Commenced dialysis during the
the intervention (n = 3) intervention (n = 2)
 Did not complete the repeated  Did not complete the repeated
measures (n = 3) measures (n = 2)
 Not contactable (n = 2)  Not contactable (n = 3)

 Discontinued intervention (n = 0)

Analysed (n = 67) Analysed (n = 68)


Analysis
 Excluded from analysis (n = 0)  Excluded from analysis (n = 0)

Figure 5.2. Consolidated standards of reporting trials 2010 participant flow diagram.

150 Chapter 5: Results


5.4.2 Recruitment

Eligible participants were recruited from November 2015 until February 2016. All of the

participants were followed for 16 weeks. The study concluded in June 2016.

5.4.3 Baseline Data

Baseline socio-demographic characteristics

Baseline socio-demographic characteristics of the control group (n = 67) and the

intervention group (n = 68) are presented in Table 5.16. There was no significant

difference in gender (p = .07), although there were more females in the intervention group

and more males in in the control group. The average age of participants in the

intervention group was 48.8 years (SD = 13.7), which was similar to the control group (M

= 48.9, SD = 13.9). There were no significant differences in other socio-demographic

characteristics between the two groups at baseline (p > .05).

Chapter 5: Results 151


Table 5.16. Baseline Sociodemographic Characteristics
Characteristics Intervention Control
n = 68 n = 67 p
Age (years), M (SD) 48.8 (13.7) 48.9 (13.9) .97ª
Gender, n (%) .07ᵇ
Male 29 (42.6) 39 (58.2)
Female 39 (57.4) 28 (41.8)
Marital status, n (%) .17ᵇ
Married 54 (79.4) 59 (88.1)
Single/Divorced/Widowed 14 (20.6) 8 (11.9)
Education, n (%) .55ᵇ
Primary school 8 (11.7) 11 (16.4)
Secondary school 18 (26.5) 17 (25.4)
High school 24 (35.3) 17 (25.4)
College/ University 18 (26.5) 22 (32.8)
Occupation, n (%) .89ᵇ
High skilled jobs 17 (25.0) 15 (22.4)
Low skilled jobs 34 (50.0) 33 (49.2)
Retired/Unemployed 17 (25.0) 19 (28.4)
Insurance status, n (%) .61ᵇ
100% reimbursed 18 (26.4) 13 (19.4)
Partly reimbursed 42 (61.8) 46 (68.7)
Self-paid 8 (11.8) 8 (11.9)
Internet searching to understand about kidney problems, n (%) .67ᵇ
Yes 26 (38.2) 28 (41.8)
No 42 (61.8) 39 (58.2)
Individual income (million VND), Mdn (IQR) 4.00 (4.0) 3.50 (3.60) .96ᶜ
Family income (million VND), Mdn (IQR) 10.0 (9.16) 8.00 (10.0) .30ᶜ
Number of family members, Mdn (IQR) 3.00 (3.0) 3.00 (2.0) .63ᶜ

Note. N = 135; ªIndependent t–tests; ᵇChi-square test; ᶜMann-Whitney U test


Abbreviations: M, Mean; SD, Standard deviation; Mdn, Median; IQR, Interquartile range; VND, Viet Nam
Dong.

152 Chapter 5: Results


Baseline related renal characteristics

Related renal characteristics at baseline included stages of CKD, cause of CKD,

medication used, comorbidities, body mass index (BMI), and length of time diagnosed

with CKD. There were no significant differences in the renal characteristics between the

two groups of participants at baseline (p > .05) (see Table 5.17). Approximately 70% of

the participants in both groups were in stages 3B and 4. The most common cause of CKD

in both groups was glomerulonephritis. Diabetes and hypertension accounted only for

11.8% and 10.5% in the intervention group and control group, respectively. There were

similarities in the total numbers of medications used and length of time diagnosed with

CKD in both control and intervention groups.

Chapter 5: Results 153


Table 5.17. Baseline Related Renal Characteristics

Characteristics Intervention Control


n = 68 n = 67 p
CKD Stage (mL/min/1.73m²), n (%) .82ᵇ
Stage 3A (45−59) 13 (19.1) 13 (19.4)
Stage 3B (30−44) 22 (32.4) 26 (38.8)
Stage 4 (15−29) 24 (35.3) 19 (28.4)
Stage 5 (< 15) 9 (13.2) 9 (13.4)
CKD Cause, n (%) .60ᵇ
Diabetes and Hypertension 8 (11.8) 7 (10.5)
Glomerulonephritis 43 (63.2) 38 (56.7)
Others 17 (25.0) 22 (32.8)
Medications used, n (%) .92ᵇ
≤ 3 medications 14 (20.6) 12 (17.9)
4–5 medications 36 (52.9) 36 (53.7)
≥ 6 medications 18 (26.5) 19 (28.4)
Comorbidities, n (%) .30ᵇ
3 comorbidities 24 (35.3) 30 (44.8)
4 comorbidities 34 (50.0) 32 (47.8)
≥ 5 comorbidities 10 (14.7) 5 (7.4)
Time diagnosed with CKD (years), n (%) .47ᵇ
≤1 20 (29.4) 17 (25.4)
> 1–5 33 (48.5) 29 (43.3)
>5 15 (22.1) 21 (31.3)
BMI, M (SD) 22.02 (3.38) 21.50 (2.65) .33ª
Note. N = 135; ªIndependent t–tests; ᵇChi-square test
Abbreviation: M, Mean; SD, Standard deviation; BMI, body mass index.

154 Chapter 5: Results


Baseline renal clinical test results

Baseline renal clinical test results included BP, potassium, blood glucose level, and

sodium. There were no statistically significant differences between groups for eGFR

results, potassium, haemoglobin, systolic blood pressure (SBP), diastolic blood pressure

(DBP), urea, and sodium results. Only one significant difference was found, blood

glucose level, between the intervention and control groups (p < .05) (see Table 5.18).

Table 5.18. Baseline Renal Clinical Test Results

Clinical Tests Intervention Control

n = 68 n = 67 p

eGFR (mL/min/1.73m²), M (SD) 30.62 (14.44) 31.30 (14.27) .79ª

Potassium (mmol/L), M (SD) 4.40 (0.52) 4.34 (0.64) .61ª

Haemoglobin (g/L), M (SD) 120.19 (20.02) 117.88 (16.95) .48ª

Blood pressure (mmHg)

Systolic Blood Pressure, M (SD) 128.28 (19.78) 129.46 (17.37) .71ª

Diastolic Blood Pressure, M (SD) 80.88 (10.51) 82.16 (11.52) .50ª

Urea (mmol/L), M (SD) 13.62 (7.21) 13.48 (7.28) .91ª

Blood glucose (mmol/L), Mdn (IQR) 5.40 (0.90) 5.15 (0.57) .02ᶜ*

Sodium (mmol/L), Mdn (IQR) 137.0 (3.0) 138.0 (3.0) .77ᶜ

Note. N = 135; ªIndependent t–tests; ᶜ Mann-Whitney U test,


*Significant at p < .05
Abbreviations: M, Mean; SD, Standard deviation; Mdn, Median; IQR, Interquartile range; eGFR, estimated
glomerular filtration rate.

Chapter 5: Results 155


Baseline characteristics of participants lost to follow-up

In total, 120 participants completed the entire study. Of the 15 who did not complete the

study (see Figure 5.2), there were no statistically significant differences between those

who dropped out and those who were followed until the end of the study time (see Table

5.19). An intention-to-treat analysis was used in this study, which involved all

participants who were randomly assigned.

156 Chapter 5: Results


Table 5.19. Baseline Characteristics of Participants Lost to Follow-Up

Characteristics Follow-up Drop-out

n = 120 n = 15 p

Age (years), M (SD) 49.0 (14.1) 48.0 (11.6) .79ª

Gender, n (%) .43ᵇ

Male 59 (49.2) 9 (60.0)

Female 61 (50.8) 6 (40.0)

Marital status, n (%) .27ᵈ

Married 102 (85.0) 11 (73.3)

Single/Divorced/Widowed 18 (15.0) 4 (26.7)

Education, n (%) .59ᵈ

Lower high school 47 (39.2) 7 (40.0)

High school and above 73 (60.8) 8 (60.0)

Occupation, n (%) .54ᵈ

Working status 89 (74.2) 10 (66.7)

Not working status 31 (25.8) 5 (33.3)

Health insurance status, n (%) .69ᵈ

Yes 106 (88.3) 13 (86.7)

No 14 (11.7) 2 (13.3)

Internet searching to understand about kidney problems, n (%) .58ᵇ

Yes 47 (39.2) 7 (46.7)

No 73 (60.8) 8 (53.3)

Note. N = 135; ªIndependent t–tests; ᵇChi-square test; ᵈ Fisher’s exact test


Abbreviation: M, Mean; SD, Standard deviation.

Chapter 5: Results 157


Instrument reliability at baseline

The Kuder-Richardson-20 (KR-20) and Cronbach’s alpha were used to analyse the

internal consistency of the V.KiKS, V.CKD-SM, V.SECD, and HRQoL (V.SF-36v2).

The Kuder-Richardson-20 of the V.KiKS was .57. The Cronbach’s alphas of the V.CKD-

SM and V.SECDS were .87 and .92. The Cronbach’s alphas of the HRQoL domains

ranged from .64 to .92 (see Table 5.20).

Table 5.20. Baseline Internal Reliability for Instrument Variables and Subscale Variables

Variables Subscale KR20 Cronbach’s α

V.KiKS .57

V.CKD-SM .87

V.SECD .92

V.SF-36v2
Physical health component summary .85

Physical functioning .86

Role physical .92

Bodily pain .89

General health .64

Mental health component summary .87

Vitality .72

Social functioning .81

Role emotional .91

Mental health .82

Note. N = 135
Abbreviations: KR20, Kuder-Richardson-20; Cronbach’s α, Cronbach’s alpha; V.KiKS, Vietnamese
Kidney disease knowledge; V.CKD-SM, Vietnamese Chronic kidney disease self-management; V.SECD,
Vietnamese Self-efficacy for managing chronic disease; V.SF-36v2, Health-related quality of life.

158 Chapter 5: Results


5.4.4 Test of Normality Continuous Variables

Continuous variables at baseline and outcome variables at each time point were tested for

a normal distribution. From a visual inspection of the histograms, normal Q-Q plots, and

box plots (see Appendix 33), the outcome variable scores at each time point were

approximately normally distributed with mean, median, standard deviation, skewness,

and kurtosis values (see Appendix 34). The other continuous variables (except for

individual income, family income, time diagnosed with CKD, blood glucose, and sodium

variables) at baseline were also approximately normally distributed, with mean, median,

standard deviation, skewness, and kurtosis values for each variable (see Appendix 34).

5.4.5 Baseline Associations between Socio-Demographic and Primary Outcomes

Independent t–tests and one-way ANOVAs were used to examine the association of

socio-demographic characteristics and the primary outcome variables including

knowledge (V.KiKS) and self-management behaviour (V.CKD-SM). The results of each

primary outcome variable are presented in Table 5.21.

Knowledge

The mean knowledge score was significantly associated with education, occupation, and

internet searching (p ≤ .01). Participants who completed high school or above (M = 18.74,

SD = 2.79) scored higher for knowledge than those with lower high school education

qualifications (M = 16.91, SD = 3.13). Regarding participant occupation, Levene’s test

revealed that the variances of the three occupation groups were not equal (p < .05). The

Welch and Brown-Forsythe tests indicated that at least one occupation group had

significant differences in the mean score of knowledge (p < .05). Post-hoc comparisons

using Tamhane’s test confirmed that the mean score for participants with high skilled jobs

Chapter 5: Results 159


was 1.92 points (95% CI = 0.43, 3.41) significantly higher than that of those with lower

skilled jobs (Tamhane’s test, p < .05), and only 0.86 points (95% CI = -0.67, 2.38) higher

than those with unemployed or retired participants, but no significant difference was

found (Tamhane’s test, p > .05). Participants or family members who did internet

searching to understand kidney problems (M = 19.09, SD = 2.84) were seen to have

significantly higher knowledge than those who did not (M = 17.28, SD = 2.99).

Self-management behaviour

The mean self-management behaviour score was significantly associated with a number

of variables, including education, occupation, and internet searching on kidney problems.

Participants who completed high school or above (M = 88.32, SD = 14.83) reported

higher self-management scores than those with lower high school education qualifications

(M = 79.04, SD = 14.05). There was a statistically significant difference at the p < .01

level in self-management scores for the three occupation groups: F(2, 132) = 6.50, p =

.002. Participants with highly skilled jobs (M = 91.06, SD = 13.06) were significantly

different from those with lower skilled jobs (M = 80.30, SD = 14.77), p < .01, while the

unemployed group (M = 86.89, SD = 15.50) did not differ significantly from either of the

other groups (p > .05). Participants or family members of those who did internet

searching (M = 90.43, SD = 13.32) were significantly different from those who did not (M

= 80.73, SD = 15.17), p < .01.

160 Chapter 5: Results


Table 5.21. Baseline Association of Socio-demographic Characteristics on Primary Outcomes Variables

Variables Categories n Knowledge Self-management

Age (years) 18–39 36 17.67 ± 3.16 84.75 ± 14.54

40–59 62 18.11 ± 3.32 83.73 ± 15.61

≥ 60 37 18.16 ± 2.50 85.85 ± 15.33

Gender Male 68 17.88 ± 3.32 83.63 ± 17.02

Female 67 18.13 ± 2.78 85.60 ± 13.10

Marital status Married 113 18.18 ± 2.98 85.31 ± 14.84

Single/divorce/widow 22 17.14 ± 3.34 81.00 ± 16.69

Education Upper high school 81 18.74 ± 2.79 88.32 ± 14.83


** **
Lower high school 54 16.91 ± 3.13 79.04 ± 14.05

Occupation High skilled jobs 32 19.19 ± 2.58 91.06 ± 13.06


** **
Low skilled jobs 67 17.27 ± 3.33 80.30 ± 14.77

Unemployed/Retired 36 18.33 ± 2.54 86.89 ± 15.50

Individual income (million VND) <3 44 17.55 ± 3.34 83.34 ± 15.10

3–6 51 18.41 ± 2.80 85.29 ± 15.64

≥6 40 18.00 ± 3.05 85.13 ± 14.95

Family income (million VND) <6 39 17.62 ± 3.51 82.05 ± 15.13

Chapter 5: Results 161


Variables Categories n Knowledge Self-management

6–9 25 18.56 ± 2.62 81.96 ± 14.07

≥9 71 18.03 ± 2.94 86.94 ± 15.40

Insurance status 100% reimbursed 31 18.06 ± 3.18 89.03 ± 13.18

Partly reimbursed 88 18.20 ± 2.97 83.75 ± 15.66

Self-paid 16 16.81 ± 3.19 80.75 ± 15.05

Family size (people) ≤2 53 18.13 ± 3.07 84.34 ± 13.96

3–4 62 17.68 ± 3.20 82.76 ± 16.26

≥5 20 18.70 ± 2.49 91.05 ± 13.66

Internet searching Yes 54 19.09 ± 2.84 90.43 ± 13.32


** **
No 81 17.28 ± 2.99 80.73 ± 15.17

Note. N = 135; ** p < .01; Value are M ± SD


Abbreviations: VND, Viet Nam Dong

162 Chapter 5: Results


5.4.6 Effect of the Self-Management Program on Outcome Variables

The effectiveness of the intervention program was assessed using linear mixed models to

examine the change in participant outcomes over time, between groups, and group × time

interaction. The outcome variables included primary and secondary outcomes. Primary

outcomes were knowledge and self-management behaviour; secondary outcomes were

self-efficacy, health-related quality of life, and blood pressure control. The linear mixed

models accounted every data point and all participant responses were included in the data

analysis at each time point to perform final study findings. Following the CONSORT

2010 guidelines (see Figure 5.2), data from 67 participants in the control group and 68 in

the intervention group were used to analyse the outcomes of the study. The effectiveness

of the self-management intervention program on each outcome variable is presented

below.

Primary outcomes

The primary outcomes were knowledge and self-management behaviour.

Knowledge

Overall, the fixed effects results from the linear mixed models revealed that participants’

knowledge in the intervention group significantly improved over time compared to those

in the control group (F = 226.89, p < .001). The treatment effects of time and group on

knowledge were also significant with ps < .01. The effect size of the overall intervention

on knowledge was large with Cohen’s d = 2.86.

The post-hoc test illustrated that the effect of the self-management program on

participants’ knowledge in both intervention and control groups. At baseline, there was no

Chapter 5: Results 163


difference in mean scores for knowledge between the intervention and control groups.

The mean scores for knowledge in the control group were remained stable, while

increasing in the intervention group over time. There was a large improvement in mean

scores for knowledge of 5.71 (95% CI = 4.80, 6.62) after 8 weeks among participants in

the intervention group compared to those in the control group. At the study completion,

week 16, the mean scores for knowledge of participants who received the intervention

sustained improvement to 7.43 (95% CI = 6.50, 8.36) compared to those in the control

group (see Table 5.23).

The average score differences in knowledge subgroups between the two groups at weeks

8 and 16 were significant (ps < .001) (see Table 5.22). The major improvement of

knowledge in the intervention group related to kidney symptoms and other understanding

related to kidney knowledge, such as eGFR, medication, and kidney treatment. These

results indicated that receiving the self-management intervention program demonstrated

significant improvement in participants’ knowledge (see Figure 5.3).

164 Chapter 5: Results


28
C o n tr o l

In ter v e n tio n
K n o w le d g e s c o r e

21

14

0
0 8 16

T im e (w e e k s )

Figure 5.3. Mean [95% CI] of knowledge scores over time for the control and
intervention groups.
Note. CI, Confidence interval.

Chapter 5: Results 165


Table 5.22. Mean Scores of Knowledge Subgroups between two Groups at Each Time Point

Subgroups Time Control (n = 67) Intervention (n = 68)

M SD M SD p

Kidney functions T0 6.48 1.06 6.38 1.25 .63


(9 items)
T1 6.24 1.43 7.32 1.47 < .001

T2 5.67 2.36 7.21 2.53 < .001


Knowledge
Kidney symptoms T0 6.06 1.77 5.97 1.89 .78
(10 items)
T1 5.96 2.01 8.06 2.01 < .001

T2 5.49 2.57 7.74 2.91 < .001

Other kidney-related T0 5.63 1.40 5.50 1.33 < .59


knowledge (9 items)
T1 5.46 1.52 7.81 1.62 < .001

T2 4.97 2.11 7.93 2.74 < .001

Note. N = 135.
Abbreviations: M, Mean; SD, Standard deviation; T0, baseline; T1, 8 weeks follow up; T2, 16 weeks follow up

166 Chapter 5: Results


Self-management behaviour

Overall, the fixed effects results from the linear mixed models illustrated that

participants’ self-management behaviour in the intervention group significantly improved

over time compared to their counterparts in the control group (F = 178.84, p < .001). The

treatment effects of time and group on self-management behaviour were significant (ps <

.01). The effect size of the overall treatment effects on self-management behaviour was

large with Cohen’s d = 1.25.

At baseline, the mean scores of participants’ self-management behaviour from both

groups were similar. There was a large improvement in mean scores for self-management

to 12.44 (95% CI = 7.48, 17.40) at week 8 in the intervention group compared to the

control group, a further improvement of 18.13 (95% CI = 13.14, 23.11) after 16 weeks

when the completed (see Table 5.23 and Figure 5.4). These results indicated the positive

effect of the intervention program in improving participants’ self-management behaviour.

Regarding each subscale of the V.CKD-SM, participants in the control group had slightly

higher mean scores on the adherence to recommended regimen subscale than those in the

intervention group at baseline, while no significant differences were found between

groups in other subscales, including self-integration, problem-solving, and seeking social

support. Over time, mean scores of the four subscales of the V.CKD-SM in the

intervention group were significantly higher compared to the control group at weeks 8

and 16, ps < .05 (see Table 5.24).

Chapter 5: Results 167


130
C o n tr o l
S elf-m a n a g e m e n t sc o r e

120
In ter v e n tio n
110

100

90

80

70

0
0 8 16

Figure 5.4. Mean [95% CI] self-management scores over time for the control and
intervention groups.
Note. CI, Confidence interval.

168 Chapter 5: Results


Table 5.23. Comparison of Primary Outcomes Variables at Each Time Point Showing Post-hoc Test for Control and Intervention Groups

Variables M (SD)

Control (n = 67) Intervention (n = 68) Mean difference [95% CI]

T0 T1 T2 T0 T1 T2 ∆T0-∆T1 ∆T0-∆T2

Knowledge 18.16 (3.00) 18.23 (2.81) 18.26 (2.68) 17.85 (3.12) 23.94 (2.14) 25.69 (1.69) 5.71 [4.80, 6.62] 7.43 [6.50, 8.36]

Self- 84.93 (15.92) 84.71 (15.68) 84.62 (15.36) 84.29 (14.51) 97.15 (13.93) 102.74 (11.41) 12.44 [7.48, 17.40] 18.13 [13.14, 23.11]
management

Note. N = 135; mean difference [95% CI] differs significantly from control group.
Abbreviations: M, Mean, SD, Standard deviation; CI, Confidence interval; T0, baseline; T1, 8 weeks follow up; T2, 16 weeks follow up; ∆T0-∆T1, Mean difference at 8
weeks follow up; ∆T0-∆T2, Mean difference at 16 weeks follow up.

Chapter 5: Results 169


Table 5.24. Mean Scores of Self-management Subscales between two Groups at Each Time Point

Subscales Time Control (n = 67) Intervention (n = 68)

M SD M SD p

Self-integration T0 33.54 5.94 32.26 6.46 .24


(11 items)
T1 32.32 6.84 35.82 7.97 .01

T2 33.69 6.05 39.84 3.87 < .001


V.CKDSM
Problem-solving T0 24.81 7.82 25.87 6.69 .39
(11 items)
T1 24.08 8.39 28.90 8.25 .01

T2 23.85 6.63 29.97 6.01 < .001

Seeking social support T0 11.04 3.85 11.76 4.07 .29


(5 items)
T1 10.97 3.60 13.10 4.13 < .01

T2 12.08 3.40 14.30 2.90 < .001

Adherence to T0 15.54 2.63 14.40 2.88 .02


recommended regimen
T1 14.89 3.53 16.22 3.51 .03
(5 items)
T2 16.10 2.56 18.15 1.56 < .001

Note. N = 135.
Abbreviations: M, Mean, SD, Standard deviation; V.CKD-SM, Vietnamese Chronic kidney disease self-management instrument; T0, baseline; T1, 8 weeks follow up;
T2, 16 weeks follow up.

170 Chapter 5: Results


Secondary outcomes

Similar mixed models were used to examine the change in participants’ self-efficacy,

health-related quality of life, and blood pressure control over time, between groups, and

group × time interaction.

Self-efficacy

Overall, the fixed effects results indicated that self-efficacy of participants who received

the intervention was significantly increased over time compared to those who did not (F =

40.81, p < .001) and a large effect size of this treatment was found (d = 0.96). The

treatment effects of time and group on self-efficacy were significant (ps < .01). Table

5.25 and Figure 5.5 present the comparisons of self-efficacy mean scores between the

intervention and control groups at three time points, including baseline, weeks 8 and 16.

The mean scores of the self-efficacy in the control group were unchanged over weeks 8

and 16, while they were significantly increased in the intervention group. The mean

difference of participants’ self-efficacy between the two groups at weeks 8 and 16 were

1.02 (95% CI = 0.49, 1.55) and 1.43 (95% CI = 0.90, 1.96), respectively.

Chapter 5: Results 171


10
C o n tr o l
9
S e lf-e ffic a c y s c o r e

In ter v e n tio n

0
0 8 16

T im e (w e e k s )

Figure 5.5. Mean [95% CI] self-efficacy scores over time for the control and intervention
groups.
Note. CI, Confidence interval.

Health-related quality of life

Table 5.25, Figures 5.6 and 5.7 present the comparisons of the two components summary

mean scores of HRQoL, including the physical health component summary (PCS) and

mental health component summary (MCS) between the intervention and control groups at

baseline and at the study completion. Participants who received the education program

improved their PCS and MCS when the study was completed compared to those with

usual care (ps < .05).

The fixed effects indicated that the overall treatment effects of group × time interaction

on the MCS was significant (F = 4.27, p < .05), while the PCS was not significant (F =

2.07, p = .15). The treatment effects of time and group on PCS were significant with F =

15.51, p < .001 and F = 4.01, p < .05, respectively. On the other hand, the effects of time

and group on MCS were not significant with ps > .05.

172 Chapter 5: Results


The mean difference scores of the PCS and MCS at week 16 between the intervention and

control group were 6.91 (95% CI = 1.22, 12.60) and 7.83 (95% CI = 1.88, 13.78),

respectively.

100
C o n tr o l
90
In ter v e n tio n
P C S sco re

80

70

60

50

0
0 16

T im e (w e e k s )

Figure 5.6. Mean [95% CI] PCS scores at baseline and week 16 for the control and
intervention groups.
Note. PCS, Physical health component summary; CI. Confidence interval.

Chapter 5: Results 173


100
C o n tr o l
90
In ter v e n tio n
M C S score

80

70

60

50

0
0 16

T im e (w e e k s )

Figure 5.7. Mean [95% CI] MCS scores at baseline and week 16 for the control and
intervention groups.

Note. MCS, Mental health component summary; CI. Confidence interval.

Blood pressure control

Comparison of results for systolic blood pressure (SBP) and diastolic blood pressure

(DBP) between the intervention and control groups are presented in Table 5.25, Figures

5.8 and 5.9. Participants in the intervention group had better SBP and DBP control

compared with participants in the control group, although it was not statistically

significant (p > .05). The fixed effects indicated that the overall treatment effects of group

× time interaction on SBP and DBP were not significant with ps > .05. The treatment

effects of time and group on SBP and DBP were also not significant (ps > .05).

174 Chapter 5: Results


150
C o n tr o l

140 In ter v e n tio n


S B P (m m H g )

130

120

110

0
0 16

T im e (w e e k s )

Figure 5.8. Mean [95% CI] SBP at baseline and week 16 for the control and intervention
groups.
Note. SBP, Systolic blood pressure; CI, Confidence interval.

100
C o n tr o l

In ter v e n tio n
D B P (m m H g )

90

80

70

0
0 16

T im e (w e e k s )

Figure 5.9. Mean [95% CI] DBP at baseline and week 16 for the control and intervention
groups.
Note. DBP, Diastolic blood pressure; CI, Confidence interval

Chapter 5: Results 175


Table 5.25. Comparison of Secondary Outcome Variables at Each Time Point Showing Post-hoc Test for Control and Intervention Groups

Variables M (SD)

Control (n = 67) Intervention (n = 68) Mean difference [95% CI]

T0 T1 T2 T0 T1 T2 ∆T0-∆T1 ∆T0-∆T2

Self-efficacy 6.14 (1.47) 6.12 (1.49) 6.17 (1.47) 6.53 (1.86) 7.14 (1.57) 7.60 (1.40) 1.02 [0.49, 1.55] 1.43 [0.90, 1.96]

PCS 62.52 (17.33) — 66.99 (15.39) 64.28 (16.65) — 73.90 (13.47) — 6.91 [1.22, 12.60]

MCS 68.17 (18.71) — 70.19 (14.66) 67.12 (19.12) — 78.01 (12.08) — 7.83 [1.88, 13.78]

SBP 129.46 (17.36) — 132.05 (14.15) 128.28 (19.77) — 127.57 (15.33) — 4.48 [-1.54, 10.49]

DBP 82.16 (11.52) — 81.85 (10.14) 80.88 (10.50) — 79.69 (9.87) — 2.16 [-1.59, 5.92]

Note. N = 135; mean difference [95% CI] differs significantly from control group.
Abbreviations: M, Mean; SD, Standard deviation; PCS, Physical health component summary; MCS, Mental health component summary; SBP, Systolic blood pressure;
DBP, Diastolic blood pressure; CI, Confidence interval; T0, baseline; T1, 8 weeks follow up; T2, 16 weeks follow up; ∆T0-∆T1, Mean difference at 8 weeks follow up;
∆T0-∆T2, Mean difference at 16 weeks follow up.

176 Chapter 5: Results


5.4.7 Ancillary Analyses

The results of Phase 2 suggested socio-demographic variables, including age, gender,

education, occupation, and individual income, could be confounding variables. Thus,

models were adjusted for the purpose of sub-group analysis to examine these

abovementioned variables as well as other related variables for Phase 3. These variables

were internet searching, marital status, family income, and health insurance, which might

have contributed to improvements in the primary outcomes. The findings from the

adjusted models are presented below.

Knowledge

All of these variables were individually included into the model of knowledge; however,

the fixed effects results from the linear mixed models revealed that no significant change

in the mean scores of knowledge were found for age, gender, marital status, individual

and family incomes, or health insurance (ps > .05). On the other hand, the fixed effects

results from the models indicated there were significant changes in the mean scores of

knowledge for education, occupation, and internet searching (ps < .05). However, the

change from unadjusted knowledge mean scores and adjusted knowledge mean scores

was very small [less than 10%; Braga, Farrokhyar, and Bhandari (2012)]; therefore, this

suggests that these abovementioned variables were not confounding variables in

knowledge found in this pRCT (see Table 5.26).

Chapter 5: Results 177


Table 5.26. Comparison of Knowledge Mean Scores between Unadjusted and Adjusted Baseline Socio-demographic Variables in the
Intervention Group

M (SEM)
Knowledge ∆⃰
Unadjusted Models Adjusted Models

T0 T1 T2 T0 T1 T2 ∆T0-∆T1 ∆T0-∆T2

Education 18.09 (0.33) 24.11 (0.33) 25.74 (0.35) -0.17 -0.05


17.85 (0.32) 23.94 (0.33) 25.69 (0.33)
Occupation 18.19 (0.32) 24.24 (0.33) 25.85 (0.34) -0.30 -0.16

Internet searching 17.97 (0.32) 24.02 (0.32) 25.65 (0.34) -0.08 0.04

Note. ∆ ⃰ , Change value of knowledge mean scores in the intervention group from unadjusted and adjusted baseline socio-demographic variables (%).
Abbreviations: M, Mean; SEM, Standard error of the mean; T0, baseline; T1, 8 weeks follow up; T2, 16 weeks follow up; ∆T0-∆T1, Change at 8 weeks follow up; ∆T0-∆T2,
Change at 16 weeks follow up.

178 Chapter 5: Results


Self-management behaviour

The above-mentioned variables, age, gender, education, occupation, individual and

family incomes, internet searching, marital status, and health insurance, were individually

adjusted to the model to examine whether these variables affected the improvement of

self-management. However, the fixed-effects results from the linear mixed models

showed no significant change in mean scores of self-management for age, individual and

family incomes, ps > .05. By contrast, the models showed significant change in mean

scores of self-management for gender, education, occupation, internet searching, marital

status, and health insurance, ps < .05. However, the change from unadjusted mean scores

of self-management and adjusted mean scores of self-management was very small [less

than 10%; Braga et al. (2012)]; therefore, this suggests that these above-mentioned

variables were not confounding variables of the results in the pRCT (see Table 5.27).

Chapter 5: Results 179


Table 5.27. Comparison of Self-management Mean Scores between Unadjusted and Adjusted Baseline Socio-demographic Variables in the
Intervention Group

M (SEM)
Self-management ∆⃰
Unadjusted Models Adjusted Models

T0 T1 T2 T0 T1 T2 ∆T0-∆T1 ∆T0-∆T2

Gender 84.04 (1.76) 96.69 (1.79) 101.94 (1.86) 0.46 0.80

Marital status 82.03 (2.19) 94.47 (2.22) 99.69 (2.28) 2.68 3.05

Education 86.50 (1.73) 99.17 (1.76) 104.88 (1.83) -2.02 -2.14


84.29 (1.77) 97.15 (1.77) 102.74 (1.78)
Occupation 86.29 (1.77) 98.95 (1.80) 104.40 (1.87) -1.80 -1.66

Health insurance 82.51 (1.96) 95.13 (1.98) 100.53 (2.04) 2.02 2.21

Internet searching 85.33 (1.70) 97.96 (1.72) 103.61 (1.80) -0.81 -0.87

Note. ∆ ⃰ , Change value of self-management behaviour mean scores in the intervention group from unadjusted and adjusted baseline socio-demographic variables (%).
Abbreviations: M, Mean; SEM, Standard error of the mean; T0, baseline; T1, 8 weeks follow up; T2, 16 weeks follow up; ∆T0-∆T1, Change at 8 weeks follow up; ∆T0-∆T2,
Change at 16 weeks follow up.

180 Chapter 5: Results


5.4.8 Participant Evaluation of the Self-Management Program

An evaluation form was provided to participants in the intervention group at week 16

when the study completed (see Appendix 26). All participants reported they would

recommend the CKD self-management program to others. Almost all participants (90%)

agreed that the teaching strategies, including the CKD booklet, face-to-face session, and

phone calls, helped them in managing their disease. About 95% of them also agreed that

the booklet was easy to read and understand. All participants agreed that doctors (renal

medical practitioners) and nurses should provide the self-management program. Twenty

percent of participants also provided some suggestions to improve the self-management

program. Their suggestions mainly focused on providing more detail in an eating plan

(example of three meals per day) and listing the recommended Vietnamese foods suitable

for those with CKD, hypertension and diabetes. Appendix 35 presents the results of the

participant evaluation.

5.4.9 Harms

All of the participants in this study received the same care and treatment from nurses and

renal medical practitioners at the renal clinics. Participants who were randomly assigned

to the intervention group received the additional self-management program. Moreover,

participation in this study was optional. There were minimal risks associated with

participation in this study. For those in the control group, there was the potential for

emotional discomfort due to the time to complete the outcome measures at the clinic or

via telephone calls. Those in the intervention group also might experience emotional

discomfort due to the time to complete the outcome measures and also during the self-

management education session. All risks were minimised as much as possible as

participants were invited to take part in the study at a time convenient for them. In

Chapter 5: Results 181


addition, they could choose to withdraw from the study at any time, and they could seek

assistance from nurses or medical practitioners at the renal clinics in Bach Mai Hosptial.

At the conclusion of the study, the control group participants were provided with the

CKD booklet.

5.5 Chapter Summary

This chapter presented the findings from all three phases of the study. Phase 1 involved

translating and validating the two instruments in Vietnamese. There were initially some

problematic words and phrases, but these were resolved prior to testing. Phase 2 involved

testing both instruments in a sample of 158 people with CKD. One to two weeks later, 52

people completed both instruments again. Satisfactory reliability was established and

these instruments were used to measure CKD knowledge and self-management behaviour

in Phase 3. This last phase was a pRCT of a self-management program delivered to

people with CKD (stages 3–5) in Vietnam. The findings of the trial indicated significant

improvements in knowledge, self-management behaviour, self-efficacy, and health-

related quality of life domains among those in the intervention group compared to those

in the control group. However, there was not a signficant improvement in BP. The study

findings are discussed in the next chapter.

182 Chapter 5: Results


Chapter 6: Discussion

6.1 Introduction

The present study, conducted in three phases, was designed to examine the effectiveness

of an intervention program in improving knowledge and self-management behaviour

among people with CKD stages 3–5 in Vietnam. The goal of the first phase was to

translate and validate the kidney disease knowledge survey (KiKS) and the chronic

kidney disease self-management (CKD-SM) instrument. The goal of Phase 2 was to

conduct a test/retest of these instruments for psychometric testing. This phase was to

ensure that both instruments were valid and reliable to measure the primary outcomes of

Phase 3. The primary aim of Phase 3 was to evaluate the self-management intervention

program for people with CKD in Vietnam, based on social cognitive theory (SCT).

The previous chapter presented the findings for each phase of the study. The purpose of

this chapter is to interpret and discuss the key findings in the light of existing literature.

This chapter first discusses how the study was guided by SCT and its application in the

Vietnamese context. Second, the results from Phases 1 and 2 are discussed. Then Phase 3

findings, which showed the effectiveness of the self-management intervention program to

improve knowledge and self-management behaviour, and previous research are

examined. Strengths, limitations, and implications together with the conclusions of this

study are presented in the final chapter.

6.2 Theoretical Framework

This is the first study to apply SCT as a framework to target a self-management

intervention program for people with CKD in Vietnam. The intervention of this study

Chapter 6: Discussion 183


focused on the key sources of information for self-efficacy, which is the core concept of

SCT. Bandura (1997) asserts that self-efficacy is an individual’s belief in their ability to

change behaviours; therefore, the stronger the level of self-efficacy, the more likely that

people will perform self-management behaviour. Therefore, the study’s intervention

targeted increasing people’s self-efficacy in their ability to competently self-manage

kidney disease.

6.2.1 Culture and Context

Social cognitive theory is a useful behavioural modification theory to improve self-

management in those with chronic diseases (Bandura, 2004a; Jang & Yoo, 2012).

However, the social factors of SCT have not been well translated into self-management

interventions which still largely focus on the individual’s beliefs. Although, SCT has

changed over time and now places more attention on the social environment and the

impact on individual behaviour decisions (Bandura, 2012), it still tends to view people as

individuals who have the power to take actions to produce certain health behaviours, with

little focus on family (Bandura, 1999). As a result, many self-management programs

ignore families in chronic disease management, such as chronic obstructive pulmonary

disease (Jonsdottir, 2013) and CKD (Welch et al., 2014).

Increasing evidence indicates the value of the family in encouraging and continuing

support in chronic disease self-management. For example, the role of the family in

providing support was reported in two recent systematic reviews, which showed that

involvement of family members as facilitators was beneficial in helping those with

chronic disease to maintain a positive approach to self-management, such as physical

activity, diet, and medication (Schulman-Green et al., 2016; Whitehead, Jacob, Towell,

Abu-Qamar, & Cole-Heath, 2017). People with higher family support levels, which can

184 Chapter 6: Discussion


lead to higher confidence levels, seem to have better disease management (Rosland et al.,

2008; Stamp et al., 2016; Wen, Parchman, & Shepherd, 2004). It could be because the

family provides extra support in caring for people with illness, particularly for those with

chronic disease and needing regular follow-up. For example, the family members provide

direct support to take their family member living with a chronic illness to have a health

assessment if they experience symptom exacerbation.

Many people with chronic disease engage in key tasks to manage their condition in a

family context, including eating, medication management, and treatment regimen. For

example, the family may be involved in providing further support for people with daily

activities to self-manage chronic illness (Whitehead et al., 2017) and reminding people to

take their medication (Flynn et al., 2013; Samuel-Hodge et al., 2000). This highlights that

self-management is not only an individual issue, but should be considered in the broader

family context, where the family is often involved in supporting and creating a good

environment that helps in maintaining everyday activities to manage CKD (Chen et al.,

2018). For example, families often provide support to their family member who has CKD

to eat the correct food and to take their medication. The support from family members is

an important aspect in each individual’s disease management; therefore, healthcare

providers should recognize this and include family members in self-management

education sessions (Thirsk & Clark, 2014).

Vietnamese culture is strongly influenced by familial relationships, and everyday

activities may be affected by the family’s culture and beliefs (Orzech, Vivian, Huebner

Torres, Armin, & Shaw, 2013). People tend to live with family and depend on family

members (Gordon, Bernadett, Evans, Shapiro, & Dang, 2009; Van, Duangpaeng, Deenan,

& Bonner, 2012). The family may be involved in healthcare decisions for hospitalised

Chapter 6: Discussion 185


family members, such as accompanying patients to hospital for treatment or regular

check-ups, paying for hospital treatment, providing food, and managing the patient’s

hygiene (Khuu, 1999; Nguyen, 1985; Van et al., 2012). Social activities in Vietnam tend

to revolve around shared meals. On the other hand, the family could be a barrier to

following a recommended diet (Orzech et al., 2013; Ramal, Petersen, Ingram, &

Champlin, 2012), or families might not understand how chronic illnesses and long-term

conditions may affect them (Peñarrieta et al., 2015). For example, a study exploring

barriers related to dietary adherence in people with chronic disease revealed that

Vietnamese participants mentioned their reluctance to offend family members or friends

who made or brought them foods that were not recommended by healthcare providers

(Orzech et al., 2013). In Vietnam, fish sauce is used often during food preparation or

cooking, which results in high sodium levels in food (Gordon et al., 2009; Nguyen, 2009).

People may therefore have difficulties in implementing the recommended dietary changes

because they affect the individual and the family in their daily lives.

As previously discussed in Chapter 2, Ong et al. (2013) indicated four behavioural

components in self-management of CKD, including food management, BP management,

blood result management, and medication management. However, each of these

components for CKD self-management is importantly shaped by culture and context,

particularly when applying it in Vietnam. Thus, this study intervention used culturally

relevant examples and materials, yet it was still grounded in an individual model of self-

management. Self-management intervention would likely be enhanced in the context of

Vietnam with greater attention to the social interdependence prevalent in Vietnamese

culture.

186 Chapter 6: Discussion


In this study, the emphasis of self-efficacy on improving self-management behaviour

among people with CKD was very successful. However, using SCT in a context such as

Vietnam requires more attention to be placed on cultural issues. This highlights the need

for considering family roles in supporting people with CKD, because individuals and

family are socially linked together in this context.

6.2.2 Mechanisms of Behaviour Change

As previously explained in Chapter 2, knowledge and self-efficacy are important skills

for self-management, including for those with CKD. Research indicates that information

sources including performance accomplishment, vicarious experience, verbal persuasion,

and self-appraisal are specific elements directed toward enhancement of self-efficacy

(Dougherty, Johnson-Crowley, Lewis, & Thompson, 2001; Sol, van der Bijl, Banga, &

Visseren, 2005). Knowledge also plays an important role in increasing self-efficacy in

people with chronic disease, because if people are not taught to understand their condition

they may be unwilling to adopt the necessary changes for better disease self-management.

Thus, the intervention of the current study aimed to improve knowledge and self-efficacy

through providing information sources to support people to better self-manage their

kidney disease. The four information sources were selected to guide the self-management

intervention program, and the combination of using these information sources could

enhance participants’ self-efficacy levels to better perform self-management behaviours.

Based on SCT (Bandura, 1986, 1997), performance accomplishment was used to assist

participants to identify their problems and set realistic personal goals to slow the

progression of CKD. Performance accomplishment was used in the face-to-face session

as participants were asked to identify one major problem or issue and to set up workable

personal self-management behaviour goals. This strategy was also used during the

Chapter 6: Discussion 187


follow-up phone calls at weeks 4 and 12. Participants used the CKD booklet at home to

record and monitor how well they had succeeded in achieving their goals at each follow-

up appointment. This strategy enabled participants to understand the signs and symptoms

of kidney disease, and promoted disease management to build the necessary skills and

behaviours to achieve their goals. A small realistic achievable goal for each participant

was reached at the first appointment follow-up; then they were asked to move to a second

goal and also maintain the first goal. However, adjusting goals needed to be accompanied

with positive feedback and encouragement if participants were unable to achieve the first

goal. The use of performance accomplishment was also reported in the face-to-face

sessions of the intervention study of Lin et al. (2013) although their intervention design

was based on self-regulation theory.

Vicarious experience was also used in both face-to-face education and phone call follow-

ups of the self-management intervention. This strategy requires participants to observe a

positive role model with similar issues performing a healthy behaviour (Bandura, 1986,

1997). Opportunities to observe others with CKD was limited in the clinic settings used in

this study, as previously explained in Chapter 3. In this study, two written scenarios of

people who managed their kidney problems well, together with images and pictures

provided in a CKD booklet, were used instead of a person. These scenarios involved

changing lifestyle and managing BP, which were used to assist participants to have an

overview of planning their tasks. Although, these scenarios were unable to cover

individual participant’s needs, they could help participants to visualise certain tasks

before making a health behaviour change. Two previous pre-dialysis CKD studies also

reported the use of vicarious experience in their intervention; however, one study used the

Health belief model theory to guide their intervention (Williams et al., 2012) and one

study used Self-regulation theory (Lin et al., 2013). These studies provided a video with

188 Chapter 6: Discussion


examples of people sharing their experiences and strategies of self-managing kidney

disease, such as taking medication and monitoring BP at home, so that people with CKD

could learn to better manage their disease.

Verbal persuasion was the most commonly used strategy in this study to enhance

participants’ self-efficacy. It was used in both the face-to-face session and two follow-up

phone calls. Verbal suggestions and encouragement were important components of the

self-management intervention. In this study, participants received further support and

encouragement via telephone follow-up, which assisted them to build their knowledge

and confidence to continue undertaking behaviour change. For example, some

participants listed their favourite foods and were then assisted to choose appropriate food

for CKD. Earlier studies also indicated that verbal encouragement and support were

important for telephone coaching to enhance efficacy in people with chronic diseases

(Carroll, Robinson, Buselli, Berry, & Rankin, 2001; Hiltunen et al., 2005). These studies

suggested the effect of using verbal persuasion in providing further support and

encouragement for people with chronic disease (Carroll et al., 2001; Hiltunen et al.,

2005). The use of verbal persuasion was reported in only one pre-dialysis CKD study

from the existing literature (Kazawa & Moriyama, 2013), which was developed based on

the National Standards for Diabetes Self-management Education. Verbal persuasion was

effective in improving participants’ self-efficacy in this study.

In this study’s intervention, self-appraisal was also used in the face-to-face session,

although it was used more frequently in the follow-up phone calls. Based on SCT

(Bandura, 1997; Lenz & Shortridge-Baggett, 2002), this strategy allowed participants to

express their concerns or difficulties in managing CKD, such as struggling with their diet,

barriers to medication adherence, or lack of motivation to exercise. In addition,

Chapter 6: Discussion 189


participants were encouraged to discuss their issues and list possible solutions to achieve

their goals easily. For example, assisting participants to write all of their medications in

the CKD booklet and put it on the dining table or in their favourite place helped them to

remember to take their medications. Therefore, self-appraisal was an important strategy

for building participants’ self-efficacy because saying and sharing how well they

performed their behaviours could assist to improve their confidence levels to continue

performing that self-management behaviour. Self-appraisal was also clearly used in one

study to encourage people with pre-dialysis CKD to express their emotions (Kazawa &

Moriyama, 2013). The use of self-appraisal encouraged them to express their feelings and

experiences of success, and nurses provided positive feedback, which helped to improve

their self-efficacy.

It should be noted in SCT that the four information sources are crucial to drive the self-

management program to improve self-efficacy levels (Bandura, 1986, 1997; Dougherty et

al., 2001; Sol et al., 2005). A systematic review assessed published findings of self-

management programs based on SCT and examined the effectiveness of applying SCT to

develop self-management programs to improve self-management behaviour of Korean

participants with chronic disease (Jang & Yoo, 2012). That review revealed that none of

the self-management programs in the review aimed to improve participants’ self-efficacy

by using all of the four information sources that are crucial to SCT. Two studies, one in

diabetes in China (Ha et al., 2014) and the other in cardiac disease in the U.S. (Hiltunen et

al., 2005), described the use of all four information sources to enhance the level of self-

efficacy. Similar to these studies, performance accomplishment and verbal persuasion

were the two main strategies used during this current study. The four information sources

were integrated into the CKD self-management program during the face-to-face session

and phone call follow-ups across the 16-week study period. The current study findings

190 Chapter 6: Discussion


revealed several positive outcomes of using SCT to guide the self-management

intervention to support participants with CKD; therefore, healthcare services should

enable self-management programs in order to help patients to improve their kidney

disease self-management.

The current study intervention was driven by SCT, and instrument developments were

required to measure the core concepts of the theory in the Vietnamese context. Therefore,

the translation and validation of the kidney disease knowledge survey (KiKS) and the

chronic kidney disease self-management (CKD-SM) instrument (Phase 1) was

undertaken. Testing these instruments (Phase 2) allowed the researcher to target the

measurement of the primary outcomes of the self-management intervention (Phase 3).

6.3 Phase One: Translation and Validation of Instruments

Prior to undertaking the main study (Phase 3), a robust process of translation and

validation of the primary outcome measures was completed. Two instruments were

selected to measure the primary outcomes of the main study, including the KiKS to

measure knowledge and the CKD-SM to measure self-management behaviour. First,

forward and back-translation of both instruments was undertaken using four bilingual

Vietnamese nurse academics. The translated instruments were then assessed by 10

experts for content face validity (S-CVI/Ave).

The translation process of the study instruments rigorously adhered to the guidelines from

Sousa and Rojjanasrirat (2011), which involved four steps and was clearly presented in

Chapter 4 (see Figure 4.2). No major problems were identified regarding the process of

forward and back-translation. However, linguistic adaptation was noticed through the

translation process of these instruments. It was mainly about different word choices in

everyday life rather than using more formal words in an academic format; therefore, a

Chapter 6: Discussion 191


few words were amended and few examples also added. These changes are likely due to

cultural differences having a different way of expressing a concept.

The expert panel evaluated the clarity and assessed the content face validity of the

Vietnamese versions of the KiKS and CKD-SM instruments. Among these members, one

renal medical practitioner (nephrologist) and two renal nurses were invited onto the panel

to validate these instruments because they had experience in caring for people with CKD

and were familiar with the language used in this field of healthcare. Inclusion of other

panel members who had differing experiences could provide a certain level of

understanding about chronic disease. The results of the validation of each instrument are

discussed below.

6.3.1 Vietnamese Kidney Disease Knowledge

A good validity of the V.KiKS was found when assessing the S-CVI/Ave of the expert

panel, which indicated that it had face validity to measure knowledge of participants with

CKD. The forward/back translation process revealed no differentiation between the

English and the Vietnamese versions although some linguistic adaptation was required.

Semantic changes in some items have also been necessary when translating the KiKS

from English into Spanish (Anaya, Wright-Nunes, & Mayta-Tristan, 2016). Similarly,

Abd Elhafeez et al. (2012) translated a kidney disease and quality of life survey from

English into Arabic, and also reported having to alter a few words or phrases to reflect

language used in everyday life. Although, the KiKS has been validated and tested before

in the U.S. (Wright et al., 2011), Peru (Anaya et al., 2016), and Australia (Wembenyui,

2017), it is also important to translate and validate it before using it in different linguistic

populations such as Vietnam. As there was no validated instrument to measure kidney

disease-specific knowledge in Vietnamese-speaking patients with CKD, the KiKS was

192 Chapter 6: Discussion


translated and validated in Vietnamese for the first time. In conclusion, the findings of

this phase demonstrated good content face validity of the V.KiKS before it underwent

further psychometric property testing in Phase 2 of this study.

6.3.2 Vietnamese Chronic Kidney Disease Self-Management

The CKD-SM was translated from English to Vietnamese and then validated using the

same methods as the KiKS. The forward and back-translation of the CKD-SM revealed a

minor difference in linguistic usage between the Vietnamese version and the original

version. For example, some minor grammatical changes were made, although these did

not change the meaning of the questions in the target version compared to the source

language. In addition, a few words were changed and examples were added to several

items to help explain how the specific activities were performed. Minor linguistic changes

have also been reported by others when translating self-management instruments [see for

example Xu, Savage, Toobert, Pan, and Whitmer (2008); Stacciarini and Pace (2014);

Kato, Ito, Kinugawa, and Kazuma (2008)]. This issue was also mentioned in previous

studies in Vietnam and other countries which involved a translation process of a self-care

instrument for people with heart failure (Ávila et al., 2013; Dinh, 2016; Siabani et al.,

2014) and diabetes (Dao-Tran, Anderson, Chang, Seib, & Hurst, 2016). The findings of

this phase indicated excellent content face validity for the V.CKD-SM which may have

been due to the selection of content experts (nephrologist and renal nurses). The expert

panel found the content could be readily understood; thus increasing likelihood that the

target population would also be able to understand and complete the instrument. The

V.CKD-SM was ready to conduct the test/retest reliability in Phase 2.

Chapter 6: Discussion 193


6.4 Phase Two: Psychometric Testing of Instruments

Phase 2 was the test/retest in 158 participants with CKD, and, of these, 52 participated in

the retest one to two weeks later. Discussion of the psychometric properties of the

V.KiKS and V.CKD-SM in this study, including internal consistency, test/retest

reliability (stability of the instruments), and feasibility of the instruments, is presented

below.

6.4.1 Vietnamese Kidney Disease Knowledge

The V.KiKS has been shown to be reliable and feasible in measuring knowledge in

participants with CKD in Vietnam. The Kuder-Richardson-20 (KR-20) value of the

V.KiKS was acceptable, even though it was lower than previous studies (Anaya et al.,

2016; Welch et al., 2016; Wembenyui, 2017; Wright et al., 2011). The lower internal

consistency result might have been influenced by the sample size during the testing

period or the variability of knowledge about kidney disease. For instance, some items of

the KiKS measured medical knowledge of kidney disease, which might be difficult for

participants to understand and answer. The intra-class correlation coefficient (ICC) value

of the V.KiKS was good indicating the stability of the instrument, meaning that

regardless of time, the responses from participants in the retest seemed to be reliable and

reproducible.

The mean score of the V.KiKS of this phase was similar to the study in Australia

(Wembenyui, 2017), but lower than the mean score found in the original study of the

KiKS (Wright et al., 2011). In general, this phase’s findings indicated that the majority of

participants did not understand some items well, such as item 4 regarding the selection of

one medication that they should avoid and item 28 relating to the absence of symptoms.

Lack of understanding about kidney disease identified in this phase seems to be consistent

194 Chapter 6: Discussion


with that of other research conducted in the U.S. (Johnson et al., 2016; Welch et al., 2016;

Wright et al., 2011), Australia (Enworom & Tabi, 2015; Gray, Kapojos, Burke,

Sammartino, & Clark, 2016; Wembenyui, 2017), Peru (Anaya et al., 2016), and Iran

(Qobadi, Besharat, Rostami, & Rahiminezhad, 2015). This phase found that Vietnamese

people had limited knowledge about CKD. This result may be explained by the fact that

in Vietnam healthcare providers (renal medical practitioners and nurses) provide very

little education to patients to help them understand kidney disease. It is also possible and

perhaps more likely that patients did not understand the information given by renal

medical practitioners, as other studies of CKD knowledge have found (Finkelstein et al.,

2008; Wright Nunes et al., 2011). This result is likely to be related to the limited health

materials available for people with CKD. Another possible explanation for this result may

be that participants had inadequate health literacy or the health materials had been written

at a high level of complexity; therefore, participants might have had difficulty in reading

and understanding the information presented.

Overall, the lack of kidney knowledge would not only affect the success of slowing the

progression of CKD, it could also affect the management of the disease. The findings

from this phase have practical implications for healthcare providers. There could be a gap

in communication between healthcare providers and people with CKD to help people

understand about kidney disease. This highlights the need to provide adequate education

support from healthcare providers for people with CKD, to improve people’s

understanding of kidney disease in order to achieve better self-management behaviour.

6.4.2 Vietnamese Chronic Kidney Disease Self-Management

This phase’s findings indicated that the V.CKD-SM was reliable and feasible to measure

self-management behaviour among people with CKD in Vietnam. The results revealed a

Chapter 6: Discussion 195


good Cronbach’s alpha value (internal consistency reliability), although these values were

slightly lower than the original version of Lin et al. (2012), but higher than the study of

Wembenyui (2017) in Australia. The intra-class correlation coefficient (ICC) of the

V.CKD-SM was higher than the acceptable level, which proved the good test/retest

reliability of this instrument. The Vietnamese version should have an equivalent meaning

with the original version, and some phrases in the V.CKD-SM were not clear or concise.

For this reason, examples demonstrating meaning were added to some items. For

example, the phrase ‘maintaining my overall health’ in item 20 was explained in more

detail, such as controlling weight, eating proper foods, and taking exercise. Another

phrase was ‘take steps’ in item 22, which needed to be explained as actions that a person

should do in order to achieve their goals, such as maintaining a healthy diet, controlling

blood pressure, and taking medication. This finding further highlights the need to

consider the expression of words and phrases used during the translation processes in

order to improve the comprehension of the target population.

The mean score of the V.CKD-SM of this phase was lower than the mean score found in

the original study of the CKD-SM (Lin et al., 2012) and the study in Australia

(Wembenyui, 2017). Overall, the results of this study revealed that some activities were

not well managed by participants. For example, participants rarely asked about reasons

for their worsening kidney function or asked renal medical practitioners or nurses to

clarify kidney treatment plans. Participants also rarely sought support from family,

friends, or significant others to cope with their disease. On the other hand, participants in

this study showed adequate abilities to incorporate treatment regimens and self-

management activities into daily life. For instance, they followed recommendations from

medical practitioners or nurses about smoking cessation, drinking, and diet. This phase’s

196 Chapter 6: Discussion


findings further highlight the need for providing self-management education programs

tailored to the needs of people with CKD.

In conclusion, this phase provides an acceptable level of psychometric properties of the

V.KiKS and V.CKD-SM instruments that could be used to measure knowledge and self-

management behaviour among people with CKD. In Vietnam, these are the first tools to

assess kidney disease-specific knowledge and self-management behaviour. The results

from this phase indicated that the V.KiKS and V.CKD-SM instruments were suitable for

use in Phase 3.

6.5 Phase Three: Effectiveness of a Chronic Kidney Disease Self-Management

Program

This study was a pRCT designed to address some of the gaps in the literature as

previously reviewed in Chapter 2. Developed using SCT, this self-management

intervention deliberately targeted patients with known CKD who were not yet receiving

dialysis when strategies could slow the progression of the disease. To the best of the

researcher’s knowledge, this study is the first pRCT to examine the effectiveness of a

theory-driven self-management intervention aimed at people with CKD stages 3–5 and

which measures patient-reported outcomes (knowledge, self-management behaviour, self-

efficacy and HRQoL) using valid and reliable instruments, and a clinical outcome (BP

control).

The effectiveness of the self-management intervention on the study outcomes are

consistent with SCT. The intervention group pattern of findings showed increases in

participants’ knowledge and self-efficacy, which translated into improved self-

management and HRQoL. Following this model, the intervention effects are discussed for

Chapter 6: Discussion 197


knowledge and self-efficacy, then self-management behaviour, HRQoL and finally BP

outcomes.

6.5.1 Knowledge

Knowledge is a precondition for behaviour change in people with CKD. While there have

been five systematic reviews in this area, only nine previous RCTs have been conducted.

Of these, only three measured knowledge (Blakeman et al., 2014; Chen et al., 2011; Teng

et al., 2013). Chen et al. (2011) and Teng et al. (2013) found improvement in participants’

knowledge in the intervention group, while this did not increase in the study of Blakeman

et al. (2014); however, three studies used three different instruments to measure

knowledge which have not been validated and used in people with pre-dialysis stages of

CKD. In this current study a valid and reliable instrument, pre-tested in the study

population, was used to measure knowledge. Therefore, comparison with previous RCTs

is limited.

This study demonstrated that those who received the self-management program had a

significantly better understanding of kidney disease compared to those in the control

group. While there are no established cut-off points in the KiKS, the improvement in

knowledge was assessed at two time points and compared with the baseline. Substantial

improvement in knowledge in the intervention group was seen at both week 8 and 16, but

not in the control group. Second, the effect size of this improvement was large (d = 2.86).

There are several potential reasons for the increase in participants’ knowledge in the

intervention group. First, the use of the Vietnamese language CKD booklet and a handout

that summarised the intervention topics during the face-to-face educational sessions

would provide valuable information about kidney disease, which was necessary to

improve participants’ knowledge. Second, the CKD booklet was translated and adapted

198 Chapter 6: Discussion


(with permission) from two handbooks, Living with Reduced Kidney Function (Kidney

Health Australia, 2008) and Living Well with Chronic Kidney Disease (American Kidney

Fund, 2010). These two handbooks are used in Australia and the U.S., and both are freely

available on their respective websites. Living Well with Chronic Kidney Disease was

produced by a kidney disease advocacy group and was one of the top five CKD patient

education materials (Tuot, Davis, Velasquez, Banerjee, & Powe, 2013). However, a

Vietnamese language version which had been contextualised for Vietnam was not

available, so this study developed this resource. In addition, almost all of the participants

(95%) in the intervention group of the recent study agreed that the CKD booklet was easy

to read and understand.

Third, the intervention program included reinforcement in education; that is, the

researcher repeated the information in the two follow-up phone calls, and allowed time to

discuss and answer individual questions. Reinforcement assisted participants in applying

their knowledge. Using telephone reinforcement in education has also been reported in

previous studies (Blakeman et al., 2014; Chen et al., 2011). On the other hand, a lack of

reinforcement in education might cause a decrease in disease knowledge (Teng et al.,

2013). It is possible that the telephone follow-ups for the intervention group reminded

participants of the main content of the CKD booklet and to use it, thus contributing to

improved knowledge.

Finally, as face-to-face education was mainly used to provide the self-management

program in this study, participants in the intervention could ask questions. As the

researcher was also a nurse, therefore this type of intervention could be delivered by a

nurse, which does seem to indicate that there is an important role for nurses in patient

education. However, a shift in Vietnamese cultural expectations that only the medical

Chapter 6: Discussion 199


practitioner is respected and listened to will need to change. What this study does also

seem to indicate is that CKD patients previously had not been educated effectively.

6.5.2 Self-Efficacy

The finding of this study revealed a significant improvement in the level of self-efficacy

in the intervention group compared to the control group. It is interesting to see the

effectiveness of the CKD self-management intervention program in improving self-

efficacy as early as 8 weeks post intervention, as well as at the end of the study period

(week 16). There were no cut-off points in the self-efficacy for managing chronic disease

6-item scale (SECDS); however, higher scores indicated greater levels of self-efficacy.

The intervention group’s self-efficacy increased by more than 10% at the completion of

the study period compared to baseline. The increase in self-efficacy levels in this study

has provided evidence to support the important role of the intervention program to

improve self-management behaviour for people with CKD.

The improvement in self-efficacy found in this study is consistent with a recent RCT

involving people with earlier stages of CKD in Japan (Joboshi & Oka, 2016), which also

found a significant improvement in self-efficacy in the intervention group compared to

the control group. Their findings indicated the effect size of their intervention was small

(r = 0.27), while the effect size of the improvement in self-efficacy of the current study

was large (d = 0.96). However, a direct comparison is not possible with Joboshi and Oka

(2016) because of differences in the use of theory-based techniques for measuring self-

efficacy and different time points from the current study.

There are several possible explanations for the increasing levels of self-efficacy in this

study. First, the four information sources were well integrated into the self-management

program, with the specific goal of assisting participants to develop the necessary skills to

200 Chapter 6: Discussion


improve their self-efficacy in performing self-management behaviours to manage their

kidney disease. Second, the intervention provided extra knowledge, which in turn

improved participants’ confidence in their capability to self-manage and resulted in them

being more willing to perform that behaviour. For example, previous research in CKD

has shown that those with greater self-efficacy are more likely to practise self-

management behaviours and have a better quality of life than those with lower self-

efficacy (Tsay & Healstead, 2002). Lastly, this study provided positive feedback to

participants in the intervention group through follow-up phone calls, which would have

assisted in increasing the belief in their ability to continue performing certain behaviours.

This finding also lends support to the role a nurse can have by following up patients with

CKD.

It is possible that knowledge is a prerequisite for changing behaviour to improve health

outcomes of people with CKD (Welch et al., 2016; Wu, Hsieh, Lin, & Tsai, 2016).

Participants who have a better understanding of kidney disease are likely to have more

confidence in managing their disease and to adhere to treatment plans. Understanding

kidney disease enables participants to bring that knowledge to practice, for example

participants are confident in reading food labels and selecting good foods with low salt

content when eating out. Enhancement of self-efficacy is necessary to improve self-

management behaviours in people with CKD (Joboshi & Oka, 2016). Therefore,

improving knowledge and confidence is important for engaging in self-management in

everyday life.

6.5.3 Self-Management Behaviour

The findings of this study showed that people who received the intervention had better

self-management behaviour than their counterparts in the control group. As no cut-off

Chapter 6: Discussion 201


point exists for the CKD-SM, the clinical significance of improvement in self-

management behaviour in the intervention group was considered using effect size. The

effect size of the improvement in self-management behaviour was large (d = 1.25).

The findings of the recent study are in agreement with those of previous research showing

that self-management programs and ongoing support are important for effective disease

management among people with chronic illnesses, particularly for those with CKD

(Bonner et al., 2014; Joboshi & Oka, 2016; Lee et al., 2016; Lin et al., 2017; Lopez-

Vargas et al., 2016; Welch et al., 2014). The current study was one of only three RCTs in

CKD stages 3–5 (Campbell et al., 2008; Chen et al., 2011; Joboshi & Oka, 2016),

although only Joboshi and Oka (2016) used models to guide the study intervention. It is

difficult to draw a conclusion that the improvement in self-management in either the

current study or that of Joboshi and Oka (2016) was due to the use of behaviour change

theories.

The significantly improved self-management behaviour observed in the current study was

consistent with the findings of two studies that used a self-management program to

support people with earlier stages of CKD in the U.K. (Blakeman et al., 2014) and in

Japan (Joboshi & Oka, 2016). Other four studies (Flesher et al., 2011; Paes-Barreto et al.,

2013; Teng et al., 2013; Williams et al., 2012) did measure self-management, however,

inconsistency was found in the study findings, as previously discussed in Chapter 2. Four

studies all observed change in self-management activities (Flesher et al., 2011), physical

activity (Teng et al., 2013), low-protein diet adherence (Paes-Barreto et al., 2013), BP

record adherence (Williams et al., 2012) in those who received the intervention program

compared to those who did not. However, these six studies did not use the CKD-SM

202 Chapter 6: Discussion


instrument to measure self-management behaviour and self-management was assessed at

different time points to the current study; direct comparison is therefore impossible.

There are several possible explanations for the improvement in self-management

behaviour among participants in the intervention group in the current study. First, the

effects of a theory-driven intervention program may contribute to the process of self-

management improvement in the intervention group due to the focus on increasing

knowledge. Second, assisting participants in understanding kidney disease was critically

important to enhance their confidence to successfully self-manage their condition.

Overall, understanding and adhering to SCT was key to demonstrating that self-

management behaviour could change, and this in turn improved HRQoL. The effect on

BP was, however, not demonstrated.

6.5.4 Health Related Quality of Life

Changes in HRQoL reflect how patients are able to self-manage CKD to achieve overall

well-being and it can serve as an important indicator to evaluate the effectiveness of self-

management interventions (Wyld, Chadban, & Morton, 2016). After 16 weeks, the

improvement in both the physical health component summary (PCS) and mental health

component summary (MCS) scores in this study indicates that the intervention group had

better HRQoL compared to the control group. This is an important finding as the

intervention has shown to be effective in improving patients’ confidence in taking dietary

change, exercise, and medication adherence to self-manage CKD and further reduce the

disease’s impact on their HRQoL. While no cut-off points existed for the PCS as well as

MCS, the higher scores in PCS and MCS indicated the participants’ improved HRQoL.

The intervention group showed an increase by 10% in PCS and 12% in MCS at week 16

when the study ended, compared to baseline. The improvement in PCS and MCS overall

Chapter 6: Discussion 203


scores in this study indicates that those who received the self-management intervention

had better HRQoL compared to those who did not.

The effect of the intervention on HRQoL observed in the current study is consistent with

previous studies that also implemented self-management education programs for people

with CKD stages 3–5 (Blakeman et al., 2014; Campbell et al., 2008). Campbell et al.

(2008) reported three components of HRQoL improved among those who received the

intervention as previously indicated in Chapter 2. Blakeman et al. (2014) only reported

the overall score of HRQoL (EQ-5D) and did not describe which subscales the instrument

covered. However, the current study used SF-36v2, which was not used in Campbell et al.

(2008) as well as Blakeman et al. (2014). Therefore, a direct comparison with these two

studies is not possible.

There are several possible reasons for the increased in HRQoL in those who received the

intervention program. First, it is possible that participants who received the self-

management support, such as changes in diet, exercise, and social activities, may have

changed their perceptions of HRQoL. It could be that during the intervention program,

participants learned and participated in their own self-management. Second, it is likely

that the follow-up phone calls provided more positive feedback and encouragement, so

their physical and mental health could improve as expected at the study completion. In

addition, the researcher encouraged the intervention group to set realistic goals for

lifestyle modifications. Therefore, it may be that these modifications improved

participants’ perceptions of their HRQoL.

Health-related quality of life is subjective and is influenced by a person’s beliefs, which

change over time (Abdel-Kader et al., 2009; Howard, Mattacola, Howell, & Lattermann,

2011; Schwartz, Andresen, Nosek, & Krahn, 2007). This change is termed response shift

204 Chapter 6: Discussion


(Fayers & Machin, 2016; Howard et al., 2011; Schwartz et al., 2007), and this occurs

when an individual with a chronic disease adapts to their illness and learns to cope with

their altered health state. As a disease such as CKD is often asymptomatic and has a long,

slow decline in renal function, people do adapt to this slow change and the effects on their

life. Response shift (Howard et al., 2011) may mask the treatment impact of self-

management on HRQoL although given that our study was only 16 weeks, the

improvement seen in HRQoL was probably real.

6.5.5 Blood Pressure Control

In this study, BP control was a secondary outcome, and there were no changes in systolic

and diastolic BP in the intervention group by week 16. This finding is inconsistent with

the study in the U.K. (Blakeman et al., 2014) that implemented the education program for

people with CKD stage 3. However, BP was measured at different time points, as the

current study measured BP 16 weeks later, while Blakeman et al. (2014) measured at 6

months and in a larger number of people (intervention group = 193, control group = 210).

The current study finding is consistent with Joboshi and Oka (2016), where

improvements in participants’ self-efficacy and self-management behaviour did not

translate to improved BP in the intervention group.

There are several possible reasons to explain the current study findings. First, it could be

due to the study not being powered to detect a change in BP. Second, larger changes in

BP are likely to take longer than 16 weeks. For example, earlier studies indicated a

significant decrease in BP results in the intervention group among people with CKD in

the Netherlands after 2 years’ follow-up (Peeters et al., 2014; Van Zuilen et al., 2011). In

addition, participants in either group could improve the management of BP by reducing

salt intake, by increasing activity, and through stopping smoking. These specific

Chapter 6: Discussion 205


outcomes were not measured in this study. Moreover, as the outcome was based on the

most recent BP recorded in participants’ charts, there may have been measurement error.

The issue related to using single readings of BP has been described in other studies

(Evans, Hodgkinson, & Berry, 2001; Garcia, Ang, Ahmad, & Lim, 2012). Using a single

data point has limitations because it could introduce error in the outcome. Standardised

measurement is required to measure BP, using the same equipment and accurate

technique for all participants (Evans et al., 2001; Garcia et al., 2012). Therefore, further

research into the effects of the CKD self-management program on BP is warranted.

There is the question of what are minimal clinically important changes in the context of

CKD. Equivocal findings of clinical outcomes, including BP and eGFR, have been

reported in six studies (Blakeman et al., 2014; Chen et al., 2011; Flesher et al., 2011;

Joboshi & Oka, 2016; Paes-Barreto et al., 2013; Williams et al., 2012) as previously

discussed in Chapter 2 (see section 2.5.2). These studies have shown that the effects of

self-management programs on changing behaviour outcomes are consistent; however,

clinical outcome is not clearly changed. It could be explained that previous research

aimed for statistically significant improvements in BP, and this aim might be not possible

to achieve in people living with CKD for several years. In the context of CKD, people

may need time to practise self-management skills to control BP. Therefore, the realistic

goals for people with CKD would be to first adhere to medication regimens, reduce salt in

their diet, and to increase physical activity to stabilize their BP, and then adjust the goal

toward lower BP towards a clinical target.

In the current study, BP results slightly decreased in the intervention group, although it

was not statistically significant. However, BP at the end of the 16-week study period

obtained from the participants’ charts revealed that both SBP and DBP of participants in

206 Chapter 6: Discussion


the intervention group were lower than baseline. It might be that participants who

received the self-management intervention started translating their understanding of CKD

to change their health behaviour although the change in BP did not reach statistical

significance.

6.6 Chapter Summary

This chapter discussed the findings from each research phase. The findings from the first

two study phases indicated that the Vietnamese versions of the kidney disease knowledge

(V.KiKS) and CKD self-management (V.CKD-SM) were valid and reliable instruments

to measure knowledge and self-management behaviour, respectively, among people with

CKD. The results from the third phase revealed the effectiveness of the CKD self-

management intervention program in improving knowledge, self-management behaviour,

self-efficacy, and HRQoL among participants who received the program. However, the

BP results were not significantly improved after the study period. Controlling BP may

require a longer study follow-up period, and therefore, further similar studies in this

population with a longer follow-up period are warranted to measure changes in BP

management. In conclusion, the findings of the current study have important implications

for further research. Strengths and limitations together with implications for further

studies are addressed in the following chapter.

Chapter 6: Discussion 207


Chapter 7: Conclusions

7.1 Introduction

This chapter first addresses the strengths and limitations of the entire study. The

implications of the study for nursing practice, education, research, and healthcare

organisations are also discussed, followed by concluding thesis remarks.

7.2 Strengths of the Study

The research conducted for this PhD has several qualities. First, the RCT study design has

several strengths: (1) the successful randomisation reduces bias (Hoffmann, Bennett, &

Del Mar, 2017); (2) it was undertaken in the clinical setting as a pragmatic trial which

reflects real practice (Alford, 2007); (3) the inclusion of a concurrent comparison group

was also a strength; and (4) the study had low (11%) loss to follow-up of participants,

which helped to enable a fair comparison between groups and improve the internal

validity. Loss to follow-up in other RCTs conducted in Vietnam involving those with

diabetes (Dang et al., 2013) or heart failure (Dinh, 2016) had attrition rates of 16% and

24%, respectively. There are two possible reasons to explain the high retention rate in the

current study. The first reason is that the majority of the participants (about 87% of the

total sample) who participated in this study were in earlier stages of CKD with less acute

exacerbation of illness, which was different to Dinh (2016) although not Dang et al.

(2013). Second, obtaining participants’ mobile phone and home phone numbers to contact

for follow-up education and appointments with renal medical practitioners at the clinics

also helped to maintain participation.

Chapter 7: Conclusions 209


In addition, the use of intention-to-treat analysis and linear mixed models which meant

participants were analysed as part of their originally allocated group and participants who

discontinued were still included in the analysis. Intention-to-treat analysis helps to

preserve the value of randomisation (Del Re, Maisel, Blodgett, & Finney, 2013; Little &

Kang, 2015). Linear mixed models and intention-to-treat also assisted with dealing with

missing data at some of the time points, and also that all available data from participants

contributed to the final analysis as previously justified in Chapter 4 (see section 4.4.12).

The third important strength of this study was the design of the intervention program

itself. Carefully integrating the study concepts into the construct of SCT helped to

contribute to the success of the intervention. According to the study’s theoretical

framework, performing self-management behaviour can be improved by enhancing self-

efficacy through information sources and supporting knowledge. Self-management

education support together with culturally relevant scenarios and materials were

incorporated into the study intervention and delivered to participants according to the

study protocol.

Fourth, the study intervention was found to be a feasible and acceptable intervention

program. Participants in the intervention group reported that follow-up strategies were

useful to help them better self-manage their kidney disease. Telephone support is

recognised to be a useful strategy to reinforce education information and encourage

participants to change their health behaviours (Carroll et al., 2001; Hiltunen et al., 2005).

For instance, several RCTs from the existing CKD literature have used telephone follow-

ups as part of the intervention self-management program (Blakeman et al., 2014;

Campbell et al., 2008; Chen et al., 2011; Paes-Barreto et al., 2013; Teng et al., 2013).

210 Chapter 7: Conclusions


Fifth, the study used valid and reliable instruments to measure the study outcomes. The

V.KiKS and V.CKD-SM instruments measured the study’s primary outcomes and both

were first translated, validated, and psychometrically evaluated in people with CKD in a

Vietnamese sample. The valid and reliable Vietnamese versions of these instruments are

now available for researchers and clinicians to use.

7.3 Limitations of the Study

Despite the strengths mentioned above, the study has some limitations that need to be

taken into consideration for future studies.

The first limitation is possible selection bias. Participants involved in the main study were

in CKD stages 3–5 and attending outpatient clinics. However, the most vulnerable

patients with CKD may be underrepresented in the current study. People who are living in

mountainous areas or remote districts in Vietnam often have low literacy levels and poor

access to renal clinics. The poorest patients who tend to live far from the clinics are

admitted to hospital only when they have acute illness rather than having regular

appointments with medical practitioners. However, these patients may need self-

management support more than others to reduce the impact of their illness. Future

research should involve participants who are admitted to inpatient clinics or in

community clinical settings to examine the effectiveness of the self-management program

to slow kidney disease progression in the broader population of people with CKD in

Vietnam.

Second, although the follow-up period was justified in the methods, it is acknowledged

that for clinical outcomes it may be too short to capture the intervention effects. That is

why this study did not consider eGFR as an outcome and also because participants may

not be required to have a blood test at a follow-up time point. The current study found

Chapter 7: Conclusions 211


that health behaviour changed within 16 weeks; however, further examination is required

to find out whether behaviour change is retained over longer periods. Therefore, longer

follow-up studies are needed to assess the maintenance and sustainability of the results

over time and to also examine whether there are beneficial effects on kidney function,

BP, and other clinical outcomes. In addition, objective outcomes such as change in eGFR

and time to dialysis are also needed in future studies to assess the effects of self-

management support on clinical outcomes. Demonstrating that knowledge and confidence

lead to behaviour change which in turn affects outcomes of slowing deterioration of

kidney function and delaying the need to start KRT would have provided objective

evidence for the value of SCT in this population.

Fourth, there was no patient advisory group to inform the development of the self-

management program. Consumer (patient) groups or representation on hospital

committees does not exist currently in Vietnam. Across the country, the traditional

medical model dominates the care of patients (see also section 7.7.4). However, patients’

views are important for clinicians and researchers to include. Previous research in CKD

does show the emerging use of consumers (Thomas & Bryar, 2013; Thomas, Bryar, &

Makanjuola, 2008). Consumers’ input can be useful for developing self-management

programs as it brings in and includes the patient’s perspectives. In addition, by having

consumers involved in research, it helps with translation of research findings into

practice. Therefore, researchers should consider using co-design research approaches in

future CKD self-management studies.

The final limitation of this study is the lack of blinding and primary outcomes were

measured by using self-reported instrument. This study could blind the outcome

evaluators given the nature of the intervention; however, it was difficult in reality because

212 Chapter 7: Conclusions


some participants disclosed their allocation to the outcome evaluators. This limitation

could contribute to response bias (Hoffmann et al., 2017). Self-reported instruments were

suitable measurements in this study although these are subjective outcomes and prone to

responder-bias such as over or under reporting. Objective measures of tracking exercise

with actigraphy or analysing breath samples to detect smoking could have overcome

reporting biases.

7.4 Implications of the Study

This study has some significant implications which can inform the development and

application of self-management programs in clinical practice, nursing education, nursing

research, and healthcare organisations.

7.4.1 Implications in Clinical Practice

First, findings of previous studies of CKD self-management in Western and non-Western

countries indicate the effectiveness of self-management programs to improve behaviour

and health outcome in those with CKD. This study in Vietnam has also shown that

participants’ knowledge and self-management behaviour can be improved with support.

Thus, CKD self-management programs should be available to inpatients, outpatients, and

primary health care clinics across the country. Providing early post-discharge self-

management education may encourage participants to identify their kidney problems and

undertake realistic personal goal-setting, which will help to achieve better self-

management of their disease at home.

Second, nurses are restricted in providing patient education in many hospitals in Vietnam

due to low-status, high patient-to-nurse ratios, and a culture of being a medical-assistant

as previously discussed in Chapter 1. Clinical nurses also do not have resources to

Chapter 7: Conclusions 213


develop patient education material. The CKD booklet is available from the current study

and has been provided to the medical and nursing staff at the site where this study took

place. The information booklet ought to be given to all patients, and nurses could then

provide some short, simple education to patients just prior to discharge from the ward or

while patients are sitting in the waiting room of the outpatient clinic.

Finally, the findings of the current study indicated that the self-management program was

feasible and useful to enhance levels of self-efficacy of participants with CKD to achieve

the aforementioned outcomes. Successful strategies for delivering this self-management

education included face-to-face and telephone follow-up. This highlights the importance

of providing self-management education via telephone for people who are unable to

partake in a hospital-based program. Thus, providing self-management support over the

telephone to people with CKD in communities could help to delay CKD progression and

prevent overcrowding at the major national hospitals. More importantly, those who have

difficulties in accessing the renal clinics at these hospitals could also receive the benefits

from the self-management programs to help them better self-manage their kidney

problems and reduce the impact of their condition.

7.4.2 Implications in Nursing Education

As self-management education is useful to people with CKD, it is also likely to be useful

for other chronic diseases, such as diabetes, hypertension, and heart failure. In addition, in

order to make a change from traditional model of hospital care to standardised care

requires nurses to have life-long learning and the ability to access evidence-based practice

to inform clinical care for patients. Thus, providing professional training for nurses in

discharge education, especially CKD self-management, is necessary to improve nurses’

skills and knowledge in delivering a self-management program prior to providing self-

214 Chapter 7: Conclusions


management education to patients. In particular, educating nurses how to move from a

traditional model of education that is about giving information to one that supports skill

building to improve patients’ confidence to perform their disease self-management is

crucial. Nurse teachers at universities and colleges need to educate nursing students

during undergraduate nursing degrees about the importance of both discharge education

for all patients as well as specific chronic disease patient education which focuses on self-

management.

7.4.3 Implications for Research

This study has three implications for further research. First, as previously discussed,

additional CKD self-management studies over longer periods and powered to detect

changes in kidney function, BP, and cholesterol are needed.

Second, research that builds on or extends the intervention by including families and

significant others is needed because Vietnamese culture is different from Western

cultures. Families in Vietnam have an important role in supporting and caring for their

sick family member (as explained in Chapter 6). Future interventional studies ought to

involve the family and significant others because they are probably influential in self-

management behaviour.

Third, it is probable that some degree of tailoring the intervention to individual needs

could enhance future studies by creating a more person-centred intervention. Qualitative

research to describe what it is like to live with CKD in Vietnam and to examine the ways

self-management occurs is urgently needed. This current study was unable to do this.

Knowing these perspectives will enable the researcher to design a study that prioritises

the needs of patients.

Chapter 7: Conclusions 215


Research in Vietnam is predominantly conducted by medical practitioners in the

traditional biomedical model of treatment methods. Nurses also do some research, but it

lacks robustness as they often use author-created instruments which have not been

adequately tested. The instruments are also not available in English, nor are these studies

published in the international literature. Future studies could use the Vietnamese versions

of the KiKS and the CKD-SM instrument to measure outcomes that would enable

comparisons between studies. Also, both instruments could be used in countries where

there are Vietnamese-speaking people, enabling further comparisons between studies.

Data from several studies could even be combined to test the structural properties within

the instruments and to test hypotheses about the relationships between knowledge and

self-management. Lastly, future CKD interventional research ought to be theory-driven,

using suitable theories or models such as SCT to explain the links between study concepts

and outcomes.

7.4.4 Implications for Healthcare Organisations

In Vietnam, the traditional healthcare model is an acute care model or a traditional

medical model. Patients may not know that they have CKD until they are admitted to

hospital. The medical model is not designed to improve patients’ health literacy. A lack

of basic health literacy means patients may not understand why they need to take

medications or monitor BP; therefore, health literacy could be a major barrier influencing

self-management. Self-management programs have a major place in delaying disease

progression, particularly in CKD. This study’s intervention deliberately included

individual face-to-face sessions, which allowed an individual to discuss, explain, and ask

disease-related questions. It also provided a CKD booklet and phone call follow-ups.

216 Chapter 7: Conclusions


The intervention was not difficult to implement in the outpatient clinics in Vietnam, and

patients were receptive to the format, content, and methods of delivery. The use of all

information sources in the intervention proved effective; however, applying all of them in

clinical settings in Vietnam may result in some difficulties for nurses. There are several

possible reasons for such challenges. First, it may be impossible to always provide a

positive role model with CKD in daily caring for patients because those who manage

their kidney disease well would be attending the clinics less frequently. Second, nurses

often have to care for many patients in the clinics and it would be challenging for nurses

to provide a complex self-management program. In addition, it is unusual for the nurse to

call participants for follow-up appointments in the traditional healthcare services in

Vietnam. Generally, nurses have insufficient time to discuss kidney knowledge and teach

patients to practise self-management skills, meaning that the other three information

sources are also difficult to carefully implement.

While chronic disease self-management programs could be translated into practice in

Vietnam, changing the traditional medical model of healthcare would require a major

shift in policy direction from the Ministry of Health to enable the culture of practice to

change. Internationally, nurses conduct chronic disease management clinics, and these are

known to improve patient and clinical outcomes (Bonner et al., 2015) and reduce the

number of hospital visits (Bonner et al., 2015; Lowery et al., 2012). The findings of this

study add local evidence that establishing CKD self-management programs conducted by

nurses will assist people to achieve better disease management. Given that over 70% of

all deaths in Vietnam are due to a chronic disease (WHO, 2014), hospitals in Vietnam

should establish chronic care management models. Investing in chronic care management

services can help to reduce the number of patients in need of acute hospital care and,

therefore, reduce the overcrowding of hospital wards.

Chapter 7: Conclusions 217


7.5 Thesis Conclusions

The main purpose of this study was to examine the effectiveness of a CKD self-

management intervention program in Vietnam. Underpinned by SCT, the program was

designed to improve knowledge, self-efficacy, self-management behaviour, and outcomes

(HRQoL and BP). Three phases were undertaken to achieve the study outcomes.

First, the Vietnamese versions of the KiKS and CKD-SM instrument are now available to

assess patients in the hospital and for future research. Second, the self-management

program was found to be an effective and simple approach to engage people with CKD in

developing knowledge, confidence, and skills to manage their illness. The resources from

the program are available for clinicians to provide to patients, and it recommended that

the program be implemented into nephrology departments across the country. Finally, this

study was the first CKD self-management RCT in Vietnam, and it contributes to

extending nursing knowledge in this area internationally so that patient care can be

improved.

218 Chapter 7: Conclusions


References

Abazarian, E., Baboli, M. T., Abazarian, E., & Ghashghaei, F. E. (2015). The effect of
problem solving and decision making skills on tendency to depression and anxiety
in patients with type 2 diabetes. Advanced Biomedical Research, 4, 112.
doi:10.4103/2277-9175.157830

Abboud, H., & Henrich, W. L. (2010). Stage IV chronic kidney disease. New England
Journal of Medicine, 362(1), 56-65. doi:10.1056/NEJMcp0906797

Abd Elhafeez, S., Sallam, S. A., Gad, Z. M., Zoccali, C., Torino, C., Tripepi, G., . . .
Awad, N. M. (2012). Cultural adaptation and validation of the "kidney disease and
quality of life - short form (KDQOL-SF™) version 1.3" questionnaire in Egypt.
BMC Nephrology, 13(1), 170. doi:10.1186/1471-2369-13-170

Abdel-Kader, K., Myaskovsky, L., Karpov, I., Shah, J., Hess, R., Dew, M. A., & Unruh,
M. (2009). Individual quality of life in chronic kidney disease: Influence of age
and dialysis modality. Clinical Journal of the American Society of Nephrology,
4(4), 711-718. doi:10.2215/CJN.05191008

Abraham, G., Varughese, S., Thandavan, T., Iyengar, A., Fernando, E., Naqvi, S. A. J., . .
. Kafle, R. K. (2016). Chronic kidney disease hotspots in developing countries in
South Asia. Clinical Kidney Journal, 9(1), 135-141. doi:10.1093/ckj/sfv109

Aggarwal, H., Jain, D., Pawar, S., & Yadav, R. (2016). Health-related quality of life in
different stages of chronic kidney disease. Quarterly Journal of Medicine,
109(11), 711-716. doi:10.1093/qjmed/hcw054

Ahmad, M. H., Shahar, S., Teng, N. I. M. F., Manaf, Z. A., Sakian, N. I. M., & Omar, B.
(2014). Applying theory of planned behavior to predict exercise maintenance in
sarcopenic elderly. Clinical Interventions in Aging, 9, 1551-1561.
doi:10.2147/CIA.S60462

AIHW. (2009). An overview of chronic kidney disease in Australia. Canberra: Australian


Institute of Health and Welfare Retrieved from
https://www.aihw.gov.au/getmedia/bba90953-e457-479f-a468-fa3641e2ccbf/phe-
111-10681.pdf.aspx?inline=true.

AIHW. (2016a). Biomedical risk factors. Canberra: Australian Institute of Health and
Welfare Retrieved from https://www.aihw.gov.au/getmedia/66629f74-d205-4033-
9bbf-f08bbaf81b3e/ah16-4-3-biomedical-risk-factors.pdf.aspx.

References 219
AIHW. (2016b). Kidney disease. Canberra: Australian Institute of Health and Welfare
Retrieved from https://www.aihw.gov.au/getmedia/83cc1bdd-557f-4d9d-9deb-
3fe65069c07e/ah16-3-8-kidney-disease.pdf.aspx.

Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human
Decision Processes, 50(2), 179-211. doi:10.1016/0749-5978(91)90020-T

Alford, L. (2007). On differences between explanatory and pragmatic clinical trials. New
Zealand Journal of Physiotherapy, 35(1), 12. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Almutary, H., Bonner, A., & Douglas, C. (2013). Symptom burden in chronic kidney
disease: A review of recent liturature. Journal of Renal Care, 39(3), 140-150.
doi:10.1111/j.1755-6686.2013.12022.x

Almutary, H., Bonner, A., & Douglas, C. (2016). Which patients with chronic kidney
disease have the greatest symptom burden? A comparative study of advanced
CKD stage and dialysis modality. Journal of Renal Care, 42(2), 73-82.
doi:10.1111/jorc.12152

Almutary, H., Douglas, C., & Bonner, A. (2016). Multidimensional symptom clusters: An
exploratory factor analysis in advanced chronic kidney disease. Journal of
Advanced Nursing, 72(10), 2389-2400. doi:10.1111/jan.12997

Almutary, H., Douglas, C., & Bonner, A. (2017). Towards a symptom cluster model in
chronic kidney disease: A structural equation approach. Journal of Advanced
Nursing, 73(10), 2450-2461. doi:10.1111/jan.13303

American Kidney Fund (Singer-songwriter). (2010). Living well with chronic kidney
disease. On. Rockville, MD: American Kidney Fund, Inc. Retrieved from:
www.kidneyfund.org

Anaya, E. M., Wright-Nunes, J. A., & Mayta-Tristan, P. (2016). Translation, cultural


adaptation and validation of the Kidney Disease Knowledge Survey (KiKS) to
Spanish. Medwave, 16(7), 1-10. doi:10.5867/medwave.2016.07.6510

ANZDATA Registry. (2016). 38th Report, Chapter 1: Incidence of end stage kidney
disease. Adelaide: Australia and New Zealand Dialysis and Transplant Registry
Retrieved from
http://www.anzdata.org.au/anzdata/AnzdataReport/38thReport/c01_anzdata_incid
ence_v1.0_20160108_web.pdf.

220 References
ANZDATA Registry. (2017). 39th Annual Report, Chapter 1: Incidence of End Stage
Kidney Disease. Adelaide: Australia and New Zealand Dialysis and Transplant
Registry Retrieved from
http://www.anzdata.org.au/anzdata/AnzdataReport/39thReport/c01_incidence_v5.
0_20170418.pdf.

Arora, P., Vasa, P., Brenner, D., Iglar, K., McFarlane, P., Morrison, H., & Badawi, A.
(2013). Prevalence estimates of chronic kidney disease in Canada: Results of a
nationally representative survey. Canadian Medical Association Journal, 185(9),
E417-E423. doi:10.1503/cmaj.120833

Audulv, Å., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness
self-management. Qualitative Health Research, 22(3), 332-345.
doi:10.1177/1049732311430497

Ávila, C. W., Riegel, B., Pokorski, S. C., Camey, S., Silveira, L. C. J., & Rabelo-Silva, E.
R. (2013). Cross-cultural adaptation and psychometric testing of the Brazilian
version of the self-care of heart failure index version 6.2. Nursing Research and
Practice, Article ID 178976. Retrieved from
http://dx.doi.org/10.1155/2013/178976.

Balaga, P. A. G. (2012). Self efficacy and self-care management outcome of chronic renal
failure patients. Asian Journal of Health, 2(1), 111. doi:10.7828/ajoh.v2i1.121

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change.


Psychological Review, 84(2), 191. Retrieved from https://web-b-ebscohost-
com.ezp01.library.qut.edu.au/ehost/pdfviewer/pdfviewer?vid=4&sid=60a72bc0-
7825-4c0e-9e56-eb9d55d8fccd%40sessionmgr104.

Bandura, A. (1986). Social foundation of thought and action: A social cognitive theory.
Englewood Cliffs, N.J: Prentice-Hall.

Bandura, A. (1989). Social cognitive theory. In R. Vasta (Ed.), Annals of child


development. (Vol. 6, pp. 1-60). Greenwich, CT: JAI Press.

Bandura, A. (1997). Self-Efficacy: The exercise of control. New York: Freeman.

Bandura, A. (1999). Social cognitive theory of personality. In L. Pervin & O. John (Eds.),
Handbook of Personality: Theory and Research (pp. 154-196). New York:
Guilford.

Bandura, A. (2002). Social cognitive theory in cultural context. Applied Psychology An


International Review, 51(2), 269-290. doi:10.1111/1464-0597.00092

References 221
Bandura, A. (2004a). Health promotion by social cognitive means. Health Education &
Behavior, 31(2), 143-164. doi:10.1177/1090198104263660

Bandura, A. (2004b). Model of causality in social learning theory. In A. Freeman (Ed.),


Cognition and psychotherapy (2 ed., pp. 25-43). New York: Springer Pub.

Bandura, A. (2006). Toward a psychology of human agency. Perspectives on


Psychological Science, 1(2), 164-180. doi:10.1111/j.1745-6916.2006.00011.x

Bandura, A. (2012). On the functional properties of perceived self-efficacy revisited.


Journal of Management, 38(1), 9-44. doi:10.1177/0149206311410606

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral


change. Cognitive Therapy & Research, 1(4), 287-310. Retrieved from
http://download-v2.springer.com/static/pdf.

Barlow, J., Wright, C., Sheasby, J., Turner, A., & Hainsworth, J. (2002). Self-
management approaches for people with chronic conditions: A review. Patient
Education and Counseling, 48(2), 177-187. doi:10.1016/S0738-3991(02)00032-0

Benight, C. C., & Bandura, A. (2004). Social cognitive theory of posttraumatic recovery:
The role of perceived self-efficacy. Behaviour Research & Therapy, 42(10), 1129-
1148. doi:10.1016/j.brat.2003.08.008

Berardi, R. (2005). Handbook of non-prescription drugs: An interactive approach to self-


care. Medical Reference Services Quarterly, 24(4), 124-126. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Beto, J. A., Schury, K. A., & Bansal, V. K. (2016). Strategies to promote adherence to
nutritional advice in patients with chronic kidney disease: A narrative review and
commentary. International Journal of Nephrology and Renovascular Disease, 9,
21-33. doi:10.2147/IJNRD.S76831

Beverly, E. A., Worley, M. F., Court, A. B., Prokopakis, K. E., & Ivanov, N. N. (2016).
Patient-physician communication and diabetes self-care. Journal of Clinical
Outcomes Management, 23(11). Retrieved from http://www.turner-
white.com/pdf/jcom_nov16_diabetes.pdf.

Bhurji, N., Javer, J., Gasevic, D., & Khan, N. A. (2016). Improving management of type
2 diabetes in South Asian patients: A systematic review of intervention studies.
BMJ Open, 6(4), 1-16. doi:10.1136/bmjopen-2015-008986

222 References
Blakeman, T., Blickem, C., Kennedy, A., Reeves, D., Bower, P., Gaffney, H., . . . Rogers,
A. (2014). Effect of information and telephone-guided access to community
support for people with chronic kidney disease: Randomised controlled trial. PLoS
One, 9(10), 1-15. doi:10.1371/journal.pone.0109135

Bonner, A., Caltabiano, M., & Berlund, L. (2013). Quality of life, fatigue, and activity in
Australians with chronic kidney disease: A longitudinal study. Nursing & Health
Sciences, 15(3), 360-367. doi:10.1111/nhs.12038

Bonner, A., & Douglas, B. (2014). Chronic kidney disease. In E. Chang & A. Johnson
(Eds.), Chronic illness & disability: Principles for nursing practice (2 ed.).
Chatswood, N.S.W: Churchill Livingstone Elsevier Australia.

Bonner, A., Douglas, C., Abel, J., Barnes, M., Stone, C., Heatherington, J., . . . Bashi, N.
(2015). Integrated chronic disease nurse practitioner service: Evaluation final
report. Retrieved from https://eprints.qut.edu.au/89021/

Bonner, A., Havas, K., Douglas, C., Thepha, T., Bennett, P., & Clark, R. (2014). Self-
management programmes in stages 1–4 chronic kidney disease: A literature
review. Journal of Renal Care, 40(3), 194-204. doi:10.1111/jorc.12058

Boothby, M. R. K., & Salmon, P. (2013). Self-efficacy and hemodialysis treatment: A


qualitative and quantitative approach. Turk Psikiyatri Dergisi, 24(2), 84-93.
Retrieved from
http://gateway.library.qut.edu.au/login?url=http://search.proquest.com/docview.

Braga, L. H. P., Farrokhyar, F., & Bhandari, M. (2012). Confounding: What is it and how
do we deal with it? Canadian Journal of Surgery, 55(2), 132-138.
doi:10.1503/cjs.036311

Braun, L., Sood, V., Hogue, S., Lieberman, B., & Copley-Merriman, C. (2012). High
burden and unmet patient needs in chronic kidney disease. International Journal
of Nephrology and Renovascular Disease, 5, 151-163.
doi:10.2147/IJNRD.S37766

Brislin, R. W. (1970). Back-translation for cross-cultural research. Journal of Cross-


Cultural Psychology, 1(3), 185-216. doi:10.1177/135910457000100301

Brooks, A. T., Andrade, R. E., Middleton, K. R., & Wallen, G. R. (2014). Social support:
A key variable for health promotion and chronic disease management in Hispanic
patients with rheumatic diseases. Clinical Medicine Insights: Arthritis and
Musculoskeletal Disorders, 7, 21-26. doi:10.4137/CMAMD.S13849

References 223
Brown, H., & Prescott, R. (2015). Repeated measures data. In Applied Mixed Models in
Medicine (3rd ed., pp. 231-288). Chichester, UK: John Wiley & Sons, Ltd.

Bui, P. V. (2007). Dialysis in Vietnam. Peritoneal Dialysis International, 27(4), 400-404.


Retrieved from http://www.pdiconnect.com/content/27/4/400.short.

Bui, T. V., Blizzard, C. L., Luong, K. N., Truong, N. L. V., Tran, B. Q., Otahal, P., . . .
Gall, S. (2015). Physical activity in Vietnam: Estimates and measurement issues.
PLoS One, 10(10), 1-14. doi:10.1371/journal.pone.0140941

Bullinger, M., Alonso, J., Apolone, G., Leplège, A., Sullivan, M., Wood-Dauphinee, S., .
. . Ware, J. E. (1998). Translating health status questionnaires and evaluating their
quality: The international quality of life assessment (IQOLA) project approach.
Journal of Clinical Epidemiology, 51(11), 913-923. doi:10.1016/S0895-
4356(98)00082-1

Burnier, M., Pruijm, M., Wuerzner, G., & Santschi, V. (2015). Drug adherence in chronic
kidney diseases and dialysis. Nephrology Dialysis Transplantation, 30(1), 39-44.
doi:10.1093/ndt/gfu015

Byrne, J., Khunti, K., Stone, M., Farooqi, A., & Carr, S. (2011). Feasibility of a
structured group education session to improve self-management of blood pressure
in people with chronic kidney disease: An open randomised pilot trial. BMJ Open,
1(2), e000381-e000381. doi:10.1136/bmjopen-2011-000381

Campbell, K. L., Ash, S., & Bauer, J. D. (2008). The impact of nutrition intervention on
quality of life in pre-dialysis chronic kidney disease patients. Clinical Nutrition,
27(4), 537-544. doi:10.1016/j.clnu.2008.05.002

Carroll, D. L., Robinson, E., Buselli, E., Berry, D., & Rankin, S. H. (2001). Activities of
the APN to enhance unpartnered elders self-efficacy after myocardial infarction.
Clinical Nurse Specialist, 15(2), 60-66. Retrieved from
http://journals.lww.com/cns-
journal/Fulltext/2001/03000/Activities_of_the_APN_to_Enhance_Unpartnered.8.
aspx.

Cassidy, C. A. (1999). Using the transtheoretical model to facilitate behavior change in


patients with chronic illness. Journal of the American Association of Nurse
Practitioners, 11(7), 281-287.

CDC. (2017). National chronic kidney disease fact sheet, 2017. Atlanta: Centers for
Disease Control and Prevention Retrieved from
https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

224 References
Cha, E. S., Kim, K. H., & Erlen, J. A. (2007). Translation of scales in cross-cultural
research: Issues and techniques. Journal of Advanced Nursing, 58(4), 386-395.
doi:10.1111/j.1365-2648.2007.04242.x

Charlson, M., Szatrowski, T. P., Peterson, J., & Gold, J. (1994). Validation of a combined
comorbidity index. Journal of Clinical Epidemiology, 47(11), 1245-1251.
doi:10.1016/0895-4356(94)90129-5

Charlson, M. E., Pompei, P., Ales, K. L., & MacKenzie, C. R. (1987). A new method of
classifying prognostic comorbidity in longitudinal studies: Development and
validation. Journal of Chronic Diseases, 40(5), 373-383. Retrieved from
http://www.sciencedirect.com/science/article/pii/0021968187901718.

Chen, S., Tsai, Y., Sun, C., Wu, I. W., Lee, C., & Wu, M. (2011). The impact of self-
management support on the progression of chronic kidney disease: A prospective
randomized controlled trial. Nephrology Dialysis Transplantation, 26(11), 3560-
3566. doi:10.1093/ndt/gfr047

Chen, Y. C., Chang, L. C., Liu, C. Y., Ho, Y. F., Weng, S. C., & Tsai, T. I. (2018). The
roles of social support and health literacy in self-management among patients with
chronic kidney disease. Journal of Nursing Scholarship. doi:10.1111/jnu.12377

Chin, H. J., Song, Y. R., Lee, J. J., Lee, S. B., Kim, K. W., Na, K. Y., . . . Chae, D.-W.
(2008). Moderately decreased renal function negatively affects the health-related
quality of life among the elderly Korean population: A population-based study.
Nephrology Dialysis Transplantation, 23(9), 2810-2817. doi:10.1093/ndt/gfn132

Choi, E. S., & Lee, J. (2012). Effects of a face-to-face self-management program on


knowledge, self-care practice and kidney function in patients with chronic kidney
disease before the renal replacement therapy. Journal of Korean Academy of
Nursing, 42(7), 1070-1078. Retrieved from
http://synapse.koreamed.org/Synapse/Data/PDFData/0006JKAN/jkan-42-
1070.pdf.

Clark, N. M. (2003). Management of chronic disease by patients. Annual Review of


Public Health, 24(1), 289-313.
doi:10.1146/annurev.publhealth.24.100901.141021

Clark, N. M., Becker, M. H., Janz, N. K., Lorig, K., Rakowski, W., & Anderson, L.
(1991). Self-management of chronic disease by older adults: A review and
questions for research. Journal of Aging and Health, 3(1), 3-27.
doi:10.1177/089826439100300101

References 225
Clarke, A. L., Young, H. M. L., Hull, K. L., Hudson, N., Burton, J. O., & Smith, A. C.
(2015). Motivations and barriers to exercise in chronic kidney disease: A
qualitative study. Nephrology Dialysis Transplantation, 30(11), 1885-1892.
doi:10.1093/ndt/gfv208

Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.).
Hillsdale, N.J: L. Erlbaum Associates.

Concato, J., Shah, N., & Horwitz, R. I. (2000). Randomized, controlled trials,
observational studies, and the hierarchy of research designs. New England Journal
of Medicine, 342(25), 1887-1892. doi:10.1056/NEJM200006223422507

Corbin, J., & Strauss, A. (1985). Managing chronic illness at home: Three lines of work.
Qualitative Sociology, 8(3), 224-247. doi:10.1007/bf00989485

Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at
home. San Francisco: Jossey-Bass.

Costantini, L., Beanlands, H., McCay, E., Cattran, D., Hladunewich, M., & Francis, D.
(2008). The self-management experience of people with mild to moderate chronic
kidney disease. Nephrology Nursing Journal, 35(2), 147-155. Retrieved from
https://www.annanurse.org/download/reference/journal/ce/expire2010/Article351
47156.pdf.

Cramm, J. M., & Nieboer, A. P. (2012). Self-management abilities, physical health and
depressive symptoms among patients with cardiovascular diseases, chronic
obstructive pulmonary disease, and diabetes. Patient Education and Counseling,
87(3), 411-415. doi:10.1016/j.pec.2011.12.006

Cruz, M. C., Andrade, C., Urrutia, M., Draibe, S., Nogueira-Martins, L. A., & Sesso, R.
d. C. C. (2011). Quality of life in patients with chronic kidney disease. Clinics,
66(6), 991-995. doi:10.1590/S1807-59322011000600012

Curtin, R. B., Mapes, D., Schatell, D., & Burrows-Hudson, S. (2005). Self-management
in patients with end stage renal disease: Exploring domains and dimensions.
Nephrology Nursing Journal, 32(4), 389-395. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Curtin, R. B., Mapes, D. L., & Thomas-Hawkins, C. (2001). Health care management
strategies of long-term dialysis survivors. Nephrology Nursing Journal, 28(4),
385-394. Retrieved from
http://link.galegroup.com.ezp01.library.qut.edu.au/apps/doc/A78681114/HRCA?u
=qut&sid=HRCA&xid=a85fdf62.

226 References
Curtin, R. B., Sitter, D. C. B., Schatell, D., & Chewning, B. A. (2004). Self-management,
knowledge, and functioning and well-being of patients on hemodialysis.
Nephrology Nursing Journal, 31(4), 378-387. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Curtin, R. B., Walters, B. A. J., Schatell, D., Pennell, P., Wise, M., & Klicko, K. (2008).
Self-efficacy and self-management behaviors in patients with chronic kidney
disease. Advances in Chronic Kidney Disease, 15(2), 191-205.
doi:10.1053/j.ackd.2008.01.006

Dang, T. T. N., Deoisres, W., Keeratiyutawong, P., & Baumann, L. (2013). Effectiveness
of a diabetes self-management support intervention in Vietnamese adults with
type 2 diabetes. Journal of Science Technology and Humanities, 11(1), 13-23.
Retrieved from
http://digital_collect.lib.buu.ac.th/ojs/index.php/huso/article/view/2761/199.

Dao-Tran, T.-H., Anderson, D. J., Chang, A. M., Seib, C., & Hurst, C. (2016).
Vietnamese version of diabetes self-management instrument: Development and
psychometric testing. Research in Nursing & Health, 40(2), 177-184.
doi:10.1002/nur.21777

Dao, T. T. H. (2012). An investigation of factors influencing diabetes self-management


among adults with type 2 diabetes in Vietnam Master's Thesis. Queensland
University of Technology. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link

de Boer, I. H., Kovesdy, C. P., Navaneethan, S. D., Peralta, C. A., Tuot, D. S., Vazquez,
M. A., & Crews, D. C. (2016). Pragmatic clinical trials in CKD: Opportunities
and challenges. Journal of the American Soceity of Nephrology, 27(10), 2948-
2954. doi:10.1681/ASN.2015111264

Del Re, A. C., Maisel, N. C., Blodgett, J. C., & Finney, J. W. (2013). Intention-to-treat
analyses and missing data approaches in pharmacotherapy trials for alcohol use
disorders. BMJ Open, 3(11), 1-6. doi:10.1136/bmjopen-2013-003464

Devraj, R., Borrego, M., Vilay, A. M., Gordon, E. J., Pailden, J., & Horowitz, B. (2015).
Relationship between health literacy and kidney function. Nephrology, 20(5), 360-
367. doi:10.1111/nep.12425

Dienemann, T., Fujii, N., Orlandi, P., Nessel, L., Furth, S. L., Hoy, W. E., . . . Feldman,
H. I. (2016). International network of chronic kidney disease cohort lestudies
(iNET-CKD): A global network of chronic kidney disease cohorts. BMC
Nephrology, 17. doi:10.1186/s12882-016-0335-2

References 227
DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: A
meta-analysis. Health Psychology, 23(2), 207-218. doi:10.1037/0278-
6133.23.2.207

Dinh, T. T. H. (2016). A self-management program for people with heart failure in


Hanoi, Vietnam : A cluster randomised controlled trial Dissertation/Thesis.
Queensland University of Technology. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link

Dinh, T. T. H., Bonner, A., Clark, R., Ramsbotham, J., & Hines, S. (2016). The
effectiveness of the teach-back method on adherence and self-management in
health education for people with chronic disease: A systematic review. JBI
Database of Systematic Reviews and Implementation Reports, 14(1), 210-247.
doi:10.11124/jbisrir-2016-2296

Dougherty, C. M., Johnson-Crowley, N. R., Lewis, F. M., & Thompson, E. A. (2001).


Theoretical development of nursing interventions for sudden cardiac arrest
survivors using social cognitive theory. Advances in Nursing Science, 24(1), 78-
86. Retrieved from
http://web.b.ebscohost.com.ezp01.library.qut.edu.au/ehost/pdfviewer/pdfviewer?v
id=4&sid=926f917a-b204-4139-a14b-e38e2749e994%40sessionmgr103.

Drey, N., Roderick, P., Mullee, M., & Rogerson, M. (2003). A population-based study of
the incidence and outcomes of diagnosed chronic kidney disease. American
Journal of Kidney Diseases, 42(4), 677-684.

Duong, C. M., Olszyna, D. P., Nguyen, P. D., & McLaws, M.-L. (2015). Challenges of
hemodialysis in Vietnam: Experience from the first standardized district dialysis
unit in Ho Chi Minh City. BMC Nephrology, 16(1), 122. doi:10.1186/s12882-015-
0117-2

EMGO+ Institute for Health and Care Research. (2010). Questionnaires: selecting,
translating and validating. Retrieved from EMGO+ Institute for Health and Care
Research, http://www.emgo.nl/home/

Enworom, C. D., & Tabi, M. (2015). Evaluation of kidney disease education on clinical
outcomes and knowledge of self-management behaviors of patients with chronic
kidney disease. Nephrology Nursing Journal, 42(4), 363-373. Retrieved from
http://go.galegroup.com.ezp01.library.qut.edu.au.

Erkut, S., Alarcón, O., Coll, C. G., Tropp, L. R., & García, H. A. V. (1999). The dual-
focus approach to creating bilingual measures. Journal of Cross-Cultural
Psychology, 30(2), 206-218. doi:10.1177/0022022199030002004

228 References
Evans, D., Hodgkinson, B., & Berry, J. (2001). Vital signs in hospital patients: A
systematic review. International Journal of Nursing Studies, 38(6), 643-650.
doi:10.1016/S0020-7489(00)00119-x

Fayers, P. M., & Machin, D. (2016). Quality of life: The assessment, analysis, and
reporting of patient-reported outcomes (3rd ed.). Hoboken, NJ: John Wiley &
Sons Inc.

Finkelstein, F. O., Story, K., Firanek, C., Barre, P., Takano, T., Soroka, S., . . .
Mendelssohn, D. (2008). Perceived knowledge among patients cared for by
nephrologists about chronic kidney disease and end-stage renal disease therapies.
Kidney International, 74(9), 1178-1184. doi:10.1038/ki.2008.376

Finnegan-John, J., & Thomas, V. J. (2013). The psychosocial experience of patients with
end-stage renal disease and its impact on quality of life: Findings from a needs
assessment to shape a service. ISRN Nephrology, 2013. doi:10.5402/2013/308986

Flesher, M., Woo, P., Chiu, A., Charlebois, A., Warburton, D. E. R., & Leslie, B. (2011).
Self-management and biomedical outcomes of a cooking, and exercise program
for patients with chronic kidney disease. Journal of Renal Nutrition, 21(2), 188-
195. doi:10.1053/j.jrn.2010.03.009

Flynn, S. J., Ameling, J. M., Hill-Briggs, F., Wolff, J. L., Bone, L. R., Levine, D. M., . . .
Boulware, L. E. (2013). Facilitators and barriers to hypertension self-management
in urban African Americans: Perspectives of patients and family members. Patient
Preference and Adherence, 7, 741-749. doi:10.2147/PPA.S46517

Freund, T., Gensichen, J., Goetz, K., Szecsenyi, J., & Mahler, C. (2013). Evaluating self-
efficacy for managing chronic disease: Psychometric properties of the six-item
self-efficacy scale in Germany. Journal of Evaluation in Clinical Practice, 19(1),
39-43. doi:10.1111/j.1365-2753.2011.01764.x

Gallagher, K., Partridge, C., Tran, H. T., Lubran, S., & Macrae, D. (2017). Nursing and
parental perceptions of neonatal care in Central Vietnam: A longitudinal
qualitative study. BMC Pediatrics, 17(1), 161. doi:10.1186/s12887-017-0909-6

Gallagher, R., Warwick, M., Chenoweth, L., Stein-Parbury, J., & Milton-Wildey, K.
(2011). Medication knowledge, adherence and predictors among people with heart
failure and chronic obstructive pulmonary disease. Journal of Nursing and
Healthcare of Chronic Illness, 3(1), 30-40. doi:10.1111/j.1752-
9824.2010.01077.x

References 229
Gallant, M. P. (2003). The influence of social support on chronic illness self-
management: A review and directions for research. Health Education & Behavior,
30(2), 170-195. doi:10.1177/1090198102251030

Garcia, M. G. U., Ang, E., Ahmad, N. M., & Lim, C. C. (2012). Correct placement of
blood pressure cuff during blood pressure measurement. International Journal of
Evidence-Based Healthcare, 10(3), 191-196. doi:10.1111/j.1744-
1609.2012.00274.x

Giang, K. B., & Allebeck, P. (2003). Self-reported illness and use of health services in a
rural district of Vietnam: Findings from an epidemiological field laboratory.
Scandinavian Journal of Public Health, 31(62_suppl), 52-58.
doi:10.1080/14034950310015112

Gopinath, B., Harris, D. C., Burlutsky, G., & Mitchell, P. (2013). Use of community
support services and activity limitations among older adults with chronic kidney
disease. Journals of Gerontology, 68(6), 741-747. doi:10.1093/gerona/gls235

Gordon, S., Bernadett, M., Evans, D., Shapiro, N. B., & Dang, L. (2009). Vietnamese
culture: Influences and implications for health care. Long Beach, CA: Molina
Healthcare, Inc Retrieved from
http://www.molinahealthcare.com/providers/ca/PDF/MediCal/healthresources_C
A_VietCultureMatTest.pdf.

Grady, P. A., & Gough, L. L. (2014). Self-management: A comprehensive approach to


management of chronic conditions. American Journal of Public Health, 104(8),
e25-e31. doi:10.2105/AJPH.2014.302041

Gray, N. A., Kapojos, J. J., Burke, M. T., Sammartino, C., & Clark, C. J. (2016). Patient
kidney disease knowledge remains inadequate with standard nephrology
outpatient care. Clinical Kidney Journal, 9(1), 113-118. doi:10.1093/ckj/sfv108

Gupta, S. K. (2011). Intention-to-treat concept: A review. Perspectives in Clinical


Research, 2(3), 109-112. doi:10.4103/2229-3485.83221

Ha, D. T., & Nuntaboot, K. (2016). How nurses in hospital in Vietnam learn to improve
their own nursing competency: An ethnographic study. Journal of Nursing and
Care 5(5), 1-6. doi:10.4172/2167-1168.1000368

Ha, M., Hu, J., Petrini, M. A., & McCoy, T. P. (2014). The effects of an educational self-
efficacy intervention on osteoporosis prevention and diabetes self-management
among adults with type 2 diabetes mellitus. Biological Research for Nursing,
16(4), 357-367. doi:10.1177/1099800413512019

230 References
Ha, N. T. H., Berman, P., & Larsen, U. (2002). Household utilization and expenditure on
private and public health services in Vietnam. Health Policy and Planning, 17(1),
61-70. Retrieved from https://academic.oup.com/heapol/article/17/1/61/652238.

Harvey, T., Calleja, P., & Phan, T. D. (2013). Improving access to quality clinical nurse
teaching: A partnership between Australia and Vietnam. Nurse Education Today,
33(6), 671-676. doi:10.1016/j.nedt.2012.02.001

Havas, K., Douglas, C., & Bonner, A. (2017). Person-centred care in chronic kidney
disease: A cross-sectional study of patients’ desires for self-management support.
BMC Nephrology, 18(1). doi:10.1186/s12882-016-0416-2

Hayden, J. (2009). Introduction to health behavior theory. Sudbury, MA: Jones and
Bartlett.

Herland, K., Akselsen, J.-P., Skjønsberg, O. H., & Bjermer, L. (2005). How
representative are clinical study patients with asthma or COPD for a larger "real
life" population of patients with obstructive lung disease? Respiratory Medicine,
99(1), 11-19. doi:10.1016/j.rmed.2004.03.026

Hesser, H. (2015). Modeling individual differences in randomized experiments using


growth models: Recommendations for design, statistical analysis and reporting of
results of internet interventions. Internet Interventions, 2(2), 110-120.
doi:10.1016/j.invent.2015.02.003

Hill-Briggs, F. (2003). Problem solving in diabetes self-management: A model of chronic


illness self-management behavior. Annals of Behavioral Medicine, 25(3), 182-
193. doi:10.1207/S15324796ABM2503_04

Hill, N. R., Fatoba, S. T., Oke, J. L., Hirst, J. A., O'Callaghan, C. A., Lasserson, D. S., &
Hobbs, F. D. R. (2016). Global prevalence of chronic kidney disease - A
systematic review and meta-analysis. PLoS One, 11(7), 1-18.
doi:10.1371/journal.pone.0158765

Hiltunen, E. F., Winder, P. A., Rait, M. A., Buselli, E. F., Carroll, D. L., & Rankin, S. H.
(2005). Implementation of efficacy enhancement nursing interventions with
cardiac elders. Rehabilitation Nursing, 30(6), 221-229. doi:10.1002/j.2048-
7940.2005.tb00116.x

Hoang, L. V., Green, T., & Bonner, A. (2018). Informal caregivers’ experiences of caring
for people receiving dialysis: A mixed-methods systematic review. Journal of
Renal Care, XX(XX), 1-14. doi:10.1111/jorc.12235

References 231
Hoffmann, T., Bennett, S., & Del Mar, C. (2017). Evidence-based practice across the
health professions (3rd ed.). Chatswood, Australia: Churchill Livingstone.

Holloway, A., & Watson, H. E. (2002). Role of self-efficacy and behaviour change.
International Journal of Nursing Practice, 8(2), 106-115. doi:10.1046/j.1440-
172x.2002.00352.x

Holman, H., & Lorig, K. (2000). Patients as partners in managing chronic disease:
Partnership is a prerequisite for effective and efficient health care. British Medical
Journal, 320(7234), 526-527. Retrieved from
http://www.bmj.com/content/bmj/320/7234/526.full.pdf.

Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality
risk: A meta-analytic review. PLoS Medicine, 7(7), 1-20.
doi:10.1371/journal.pmed.1000316

Howard, J. S., Mattacola, C. G., Howell, D. M., & Lattermann, C. (2011). Response shift
theory: An application for health-related quality of life in rehabilitation research
and practice. Journal of Allied Health, 40(1), 31-38. doi:10.1087/20110214

Hoy, D., Rao, C., Nhung, N. T. T., Marks, G., & Hoa, N. P. (2013). Risk factors for
chronic disease in Viet Nam: A review of the literature. Preventing Chronic
Disease, 10, 1-17. doi:10.5888/pcd10.120067

Huan, Y., Cohen, D. L., & Townsend, R. R. (2015). Pathophysiology of hypertension in


chronic kidney disease. In M. Rosenberg & P. Kimmel (Eds.), Chronic Renal
Disease (pp. 163-169). San Diego, CA: Academic Press.

Hung, C.-C., Lin, H. Y.-H., Hwang, D.-Y., Kuo, I. C., Chiu, Y.-W., Lim, L.-M., . . .
Chen, H.-C. (2017). Diabetic retinopathy and clinical parameters favoring the
presence of diabetic nephropathy could predict renal outcome in patients with
diabetic kidney disease. Scientific Reports, 7(1), 1236. doi:10.1038/s41598-017-
01204-6

Hwang, S.-J., Tsai, J.-C., & Chen, H.-C. (2010). Epidemiology, impact and preventive
care of chronic kidney disease in Taiwan. Nephrology, 15(2), 3-9.
doi:10.1111/j.1440-1797.2010.01304.x

Hyodo, T., Hirawa, N., Hayashi, M., Than, K. M. M., Tuyen, D. G., Pattanasittangkur,
K., . . . Yamashita, A. C. (2017). Present status of renal replacement therapy at
2015 in Asian countries (Myanmar, Vietnam, Thailand, China, and Japan). Renal
Replacement Therapy, 3(11), 1-14. doi:10.1186/s41100-016-0082-7

232 References
Ibrahim, N., Teo, S. S. L., Che Din, N., Abdul Gafor, A. H., & Ismail, R. (2015). The role
of personality and social support in health-related quality of life in chronic kidney
disease patients. PLoS One, 10(7), 1-11. doi:10.1371/journal.pone.0129015

Imai, E., & Matsuo, S. (2008). Chronic kidney disease in Asia. The Lancet, 371(9631),
2147-2148. Retrieved from http://ac.els-cdn.com/S0140673608609289/1-s2.0-
S0140673608609289-main.pdf.

Iseki, K. (2008). Chronic kidney disease in Japan. Internal Medicine, 47(8), 681-689.
doi:10.2169/internalmedicine.47.0906

Ismail, K., Winkley, K., & Rabe-Hesketh, S. (2004). Systematic review and meta-
analysis of randomised controlled trials of psychological interventions to improve
glycaemic control in patients with type 2 diabetes. The Lancet, 363(9421), 1589-
1597. Retrieved from http://ac.els-cdn.com/S0140673604162028/1-s2.0-
S0140673604162028-main.pdf.

Ito, J., Hao, D. D., Oanh, L. T. K., Lieu, D. T., Fujisawa, M., Kawabata, M., . . . Hien, M.
T. (2008). Impact and perspective on chronic kidney disease in an Asian
developing country: A large-scale survey in North Vietnam. Nephron Clinical
Practice, 109(1), c25-c32. doi:10.1159/000134379

Jang, Y., & Yoo, H. (2012). Self-management programs based on the social cognitive
theory for Koreans with chronic disease: A systematic review. Contemporary
Nurse, 40(2), 147-159. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Jansen, D. L., Rijken, M., Heijmans, M. J., Kaptein, A. A., & Groenewegen, P. P. (2012).
Psychological and social aspects of living with chronic kidney disease. In M.
Sahay (Ed.), Chronic Kidney Disease and Renal Transplantation (pp. 47-74):
InTech.

Jerant, A. F., Friederichs-Fitzwater, M. M. v., & Moore, M. (2005). Patients’ perceived


barriers to active self-management of chronic conditions. Patient Education and
Counseling, 57(3), 300-307. doi:10.1016/j.pec.2004.08.004

Jha, V., Garcia-Garcia, G., Iseki, K., Li, Z., Naicker, S., Plattner, B., . . . Yang, C. (2013).
Chronic kidney disease: Global dimension and perspectives. The Lancet,
382(9888), 260-272. doi:10.1016/S0140-6736(13)60687-X

Jha, V., Wang, A. Y.-M., & Wang, H. (2012). The impact of CKD identification in large
countries: The burden of illness. Nephrology Dialysis Transplantation, 27(Suppl
3), iii32-iii38. doi:10.1093/ndt/gfs113

References 233
Jhamb, M., Liang, K., Yabes, J., Steel, J. L., Dew, M. A., Shah, N., & Unruh, M. (2013).
Prevalence and correlates of fatigue in chronic kidney disease and end-stage renal
disease: Are sleep disorders a key to understanding fatigue? American Journal of
Nephrology, 38(6), 489-495. doi:10.1159/000356939

Joboshi, H., & Oka, M. (2016). Effectiveness of an educational intervention (the


encourage autonomous self-enrichment program) in patients with chronic kidney
disease: A randomized controlled trial. International Journal of Nursing Studies,
67(2017), 51-58. doi:10.1016/j.ijnurstu.2016.11.008

Johnson, D. W., Atai, E., Chan, M., Phoon, R. K., Scott, C., Toussaint, N. D., . . . Kha, C.
(2013). KHA-CARI guideline: Early chronic kidney disease: Detection,
prevention and management. Nephrology, 18(5), 340-350. doi:10.1111/nep.12052

Johnson, D. W., & Mathew, T. (2007). Managing chronic kidney disease. Medicine
Today, 8(7), 37-45. Retrieved from
http://medicinetoday.com.au/2007/september/article/managing-chronic-kidney-
disease#.UyWdpV4VfL8.

Johnson, M. L., Zimmerman, L., Welch, J. L., Hertzog, M., Pozehl, B., & Plumb, T.
(2016). Patient activation with knowledge, self‐management and confidence in
chronic kidney disease. Journal of Renal Care, 42(1), 15-22.
doi:10.1111/jorc.12142

Jones, P. S., Lee, J. W., Phillips, L. R., Zhang, X. E., & Jaceldo, K. B. (2001). An
adaptation of Brislin's translation model for cross-cultural research. Nursing
Research, 50(5), 300-304. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Jonsdottir, H. (2013). Self-management programmes for people living with chronic


obstructive pulmonary disease: A call for a reconceptualisation. Journal of
Clinical Nursing, 22(5-6), 621-637. doi:10.1111/jocn.12100

Jordan, J. E., & Osborne, R. H. (2007). Chronic disease self-management education


programs: Challenges ahead. Medical Journal of Australia, 186(2), 84-87.
Retrieved from http://gateway.library.qut.edu.au.

Kato, N., Ito, N., Kinugawa, K., & Kazuma, K. (2008). Validity and reliability of the
Japanese version of the European heart failure self-care behavior scale. European
Journal of Cardiovascular Nursing, 7(4), 284-289.
doi:10.1016/j.ejcnurse.2007.12.005

234 References
Kazawa, K., & Moriyama, M. (2013). Effects of a self-management skills-acquisition
program on pre-dialysis patients with diabetic nephropathy. Nephrology Nursing
Journal, 40(2), 141-148. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Kent, S., Schlackow, I., Lozano-Kühne, J., Reith, C., Emberson, J., Haynes, R., . . .
Mihaylova, B. (2015). What is the impact of chronic kidney disease stage and
cardiovascular disease on the annual cost of hospital care in moderate-to-severe
kidney disease? BMC Nephrology, 16(1), 1-8. doi:10.1186/s12882-015-0054-0

Kerr, M., Bray, B., Medcalf, J., O'Donoghue, D. J., & Matthews, B. (2012). Estimating
the financial cost of chronic kidney disease to the NHS in England. Nephrology
Dialysis Transplantion, 27(3), iii73-iii80. doi:10.1093/ndt/gfs269

Khuu, D. T. (1999). Vietnamese health care. Stanford Medical Review, 1(1), 6-10.
Retrieved from http://med.stanford.edu/medicalreview/smrvietnam.pdf.

Kidney Health Australia. (2008). Living with reduced kidney function: A handbook for
self-management of chronic kidney disease. Retrieved from Kidney Health
Australia, www.kidney.org.au/

Kidney Health Australia. (2009). The impact of kidney disease and what Government
should be doing about it. Retrieved from www.kidney.org.au/

Kidney Health Australia. (2015). Chronic kidney disease (CKD) management in general
practice (3rd ed.). Retrieved from http://kidney.org.au/cms_uploads/docs/ckd-
management-in-gp-handbook-3rd-edition.pdf

Kim, W., Shimada, H., & Sakano, Y. (1996). The relationship between self-efficacy on
health behavior and stress responses in chronic disease patients. Japanese Journal
of Psychosomatic Medicine, 36, 499-505.

Kline, P. (2013). Handbook of Psychological Testing. Hoboken: Routledge.

Koopman-van den Berg, D. J., & van der Bijl, J. J. (2001). The use of self-efficacy
enhancing methods in diabetes education in the Netherlands. Scholarly Inquiry for
Nursing Practice, 15(3), 249-257. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Kralik, D., Price, K., & Telford, K. (2010). The meaning of self-care for people with
chronic illness. Journal of Nursing and Healthcare of Chronic Illness, 2(3), 197-
204. doi:10.1111/j.1752-9824.2010.01056.x

References 235
Langford, C. P. H., Bowsher, J., Maloney, J. P., & Lillis, P. P. (1997). Social support: A
conceptual analysis. Journal of Advanced Nursing, 25(1), 95-100.
doi:10.1046/j.1365-2648.1997.1997025095.x

Le, A. T. K., Vu, L. T. H., & Schelling, E. (2014). Assessment of health status across
different types of migrant populations in Hanoi-Vietnam: A cross-sectional study
using SF 36 version 2. Vietnam Journal of Public Health, 2(1), 13-25. Retrieved
from http://scholar.google.com.au/scholar.

Lederer, S., Fischer, M. J., Gordon, H. S., Wadhwa, A., Popli, S., & Gordon, E. J. (2015).
Barriers to effective communication between veterans with chronic kidney disease
and their healthcare providers. Clinical Kidney Journal, 8(6), 766-771.
doi:10.1093/ckj/sfv079

Lee, M. C., Wu, S. F. V., Hsieh, N. C., & Tsai, J. M. (2016). Self-management programs
on eGFR, depression, and quality of life among patients with chronic kidney
disease: A meta-analysis. Asian Nursing Research, 10(4), 255-262.
doi:10.1016/j.anr.2016.04.002

Lenz, E. R., & Shortridge-Baggett, L. M. (2002). Self efficacy in nursing: Research and
measurement perspectives. New York: Springer Pub.

Levey, A. S., & Coresh, J. (2012). Chronic kidney disease. The Lancet, 379(9811), 165-
180. doi:10.1016/S0140-6736(11)60178-5

Lewis, A. L., Stabler, K. A., & Welch, J. L. (2010). Perceived informational needs,
problems, or concerns among patients with stage 4 chronic kidney disease.
Nephrology Nursing Journal, 37(2), 143-149. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Li, P. K., Chow, K. M., Matsuo, S., Yang, C. W., Jha, V., Becker, G., . . . Chowdhury, S.
(2011). Asian chronic kidney disease best practice recommendations: Positional
statements for early detection of chronic kidney disease from Asian Forum for
Chronic Kidney Disease Initiatives (AFCKDI). Nephrology, 16(7), 633-641.
doi:10.1111/j.1440-1797.2011.01503.x

Lim, A. K. H. (2014). Diabetic nephropathy – complications and treatment. International


Journal of Nephrology and Renovascular Disease, 7, 361-381.
doi:10.2147/IJNRD.S40172

Lin, C., Anderson, R. M., Chang, C., Hagerty, B. M., & Loveland-Cherry, C. J. (2008).
Development and testing of the diabetes self-management Instrument: A

236 References
confirmatory analysis. Research in Nursing & Health, 31(4), 370-380.
doi:10.1002/nur.20258

Lin, C., Tsai, F., Lin, H., Hwang, S., & Chen, H. (2013). Effects of a self-management
program on patients with early-stage chronic kidney disease: A pilot study.
Applied Nursing Research, 26(3), 151-156. doi:10.1016/j.apnr.2013.01.002

Lin, C. C., Wu, C. C., Wu, L. M., Chen, H. M., & Chang, S. C. (2012). Psychometric
evaluation of a new instrument to measure disease self-management of the early
stage chronic kidney disease patients. Journal of Clinical Nursing, 22(7-8), 1073-
1079. doi:10.1111/j.1365-2702.2011.04048.x

Lin, M.-Y., Liu, M. F., Hsu, L.-F., & Tsai, P.-S. (2017). Effects of self-management on
chronic kidney disease: A meta-analysis. International Journal of Nursing
Studies, 74, 128-137. doi:10.1016/j.ijnurstu.2017.06.008

Little, R., & Kang, S. (2015). Intention‐ to‐ treat analysis with treatment discontinuation
and missing data in clinical trials. Statistics in Medicine, 34(16), 2381-2390.
doi:10.1002/sim.6352

Lopez-Vargas, P. A., Tong, A., Howell, M., & Craig, J. C. (2016). Educational
interventions for patients with CKD: A systematic review. American Journal of
Kidney Diseases, 68(3), 353-370. doi:10.1053/j.ajkd.2016.01.022

Lopez‐ Vargas, P. A., Tong, A., Phoon, R. K. S., Chadban, S. J., Shen, Y., & Craig, J. C.
(2014). Knowledge deficit of patients with stage 1–4 chronic kidney disease: A
focus group study. Nephrology, 19(4), 234-243. doi:10.1111/nep.12206

Lorig, K. (2002). Partnerships between expert patients and physicians. The Lancet,
359(9309), 814-815. doi:10.1016/S0140-6736(02)07959-X

Lorig, K., Chastain, R. L., Ung, E., Shoor, S., & Holman, H. R. (1989). Development and
evaluation of a scale to measure perceived self-efficacy in people with arthritis.
Arthritis & Rheumatism, 32(1), 37-44. doi:10.1002/anr.1780320107

Lorig, K., Sobel, D., & Gonzalez, V. (2012). Living a healthy life with chronic
conditions: Self-management of heart disease, arthritis, diabetes, depression,
asthma, bronchitis, emphysema and other physical and mental health conditions.
Boulder, CO: Bull Pub. Co.

Lorig, K. R., & Holman, H. R. (2003). Self-management education: History, definition,


outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1), 1-7.
doi:10.1207/S15324796ABM2601_01

References 237
Lorig, K. R., Sobel, D. S., Ritter, P. L., Laurent, D., & Hobbs, M. (2001). Effect of a self-
management program on patients with chronic disease. Effective Clinical
Practice, 4(6), 256-262. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Lowery, J., Hopp, F., Subramanian, U., Wiitala, W., Welsh, D. E., Larkin, A., . . .
Vaitkevicius, P. (2012). Evaluation of a nurse practitioner disease management
model for chronic heart failure: A multi-site implementation study. Congestive
Heart Failure, 18(1), 64-71. doi:10.1111/j.1751-7133.2011.00228.x

Lu, C., Zhao, H., Xu, G., Yue, H., Liu, W., Zhu, K., & Liu, X. (2010). Prevalence and
risk factors associated with chronic kidney disease in a Uygur adult population
from Urumqi. Journal of Huazhong University of Science and Technology, 30(5),
604-610. doi:10.1007/s11596-010-0550-1

Ludman, E. J., Peterson, D., Katon, W. J., Lin, E. H. B., Von Korff, M., Ciechanowski,
P., . . . Gensichen, J. (2013). Improving confidence for self care in patients with
depression and chronic illnesses. Behavioral Medicine, 39(1), 1-6.
doi:10.1080/08964289.2012.708682

Lunenburg, F. C. (2011). Self-efficacy in the workplace: Implications for motivation and


performance. International Journal of Management, Business, and
Administration, 14(1), 1-6. Retrieved from
http://nationalforum.com/Electronic%20Journal%20Volumes/Lunenburg,%20Fre
d%20C.%20Self-
Efficacy%20in%20the%20Workplace%20IJMBA%20V14%20N1%202011.pdf.

Luszczynska, A., & Schwarzer, R. (2005). Social cognitive theory. In M. Conner & P.
Norman (Eds.), Predicting health behaviour: Research and practice with social
cognition models (2 ed., pp. 120-169). Maidenhead: Open University Press.

Ma, Y., Mazumdar, M., & Memtsoudis, S. G. (2012). Beyond repeated measures
ANOVA: Advanced statistical methods for the analysis of longitudinal data in
anesthesia research. Regional Anesthesia and Pain Medicine, 37(1), 99-105.
doi:10.1097/AAP.0b013e31823ebc74

Mackey, L. M., Doody, C., Werner, E. L., & Fullen, B. (2016). Self-management skills in
chronic disease management: What role does health literacy have? Medical
Decision Making, 36(6), 741-759. doi:10.1177/0272989x16638330

Maneesriwongul, W., & Dixon, J. K. (2004). Instrument translation process: A methods


review. Journal of Advanced Nursing, 48(2), 175-186. doi:10.1111/j.1365-
2648.2004.03185.x

238 References
McAlister, A. L., Perry, C. L., & Parcel, G. S. (2008). How individuals, environments,
and health behaviours interact: Social cognitive theory. In K. Glanz, B. K. Rimer
& K. Viswanath (Eds.), Health behavior and health education: Theory, research,
and practice. San Francisco: Jossey-Bass.

McDonald, H. P., Garg, A. X., & Haynes, R. (2002). Interventions to enhance patient
adherence to medication prescriptions: Scientific review. Journal of American
Medical Association, 288(22), 2868-2879. doi:10.1001/jama.288.22.2868

McGraw, K. O., & Wong, S. P. (1996). Forming inferences about some intraclass
correlation coefficients. Psychological Methods, 1(1), 30-46. doi:10.1037/1082-
989X.1.1.30

McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-item short-form
health survey (SF-36).2. Psychometric and clinical-tests of validity in measuring
physical and mental-health constructs. Medical Care, 31(3), 247-263. Retrieved
from http://qut.summon.serialssolutions.com/2.0.0/link.

Mills, K. T., Xu, Y., Zhang, W., Bundy, J. D., Chen, C.-S., Kelly, T. N., . . . He, J.
(2015). A systematic analysis of world-wide population-based data on the global
burden of chronic kidney disease in 2010. Kidney International, 88(5), 950-957.
doi:10.1038/ki.2015.230

Minh, H. V., Huong, D. L., & Giang, K. B. (2008). Self-reported chronic diseases and
associated sociodemographic status and lifestyle risk factors among rural
Vietnamese adults. Scandinavian Journal of Social Medicine, 36(6), 629-634.
doi:10.1177/1403494807086977

Minh, H. V., Huong, D. L., Giang, K. B., & Byass, P. (2009). Economic aspects of
chronic diseases in Vietnam. Global Health Action, 2, 1-8.
doi:10.3402/gha.v2i0.1965

Moattari, M., Ebrahimi, M., Sharifi, N., & Rouzbeh, J. (2012). The effect of
empowerment on the self-efficacy, quality of life and clinical and laboratory
indicators of patients treated with hemodialysis: A randomized controlled trial.
Health and Quality of Life Outcomes, 10(1), 115-115. doi:10.1186/1477-7525-10-
115

Moher, D., Hopewell, S., Schulz, K. F., Montori, V., Gøtzsche, P. C., Devereaux, P. J., . .
. Altman, D. G. (2010). CONSORT 2010 explanation and elaboration: Updated
guidelines for reporting parallel group randomised trials. Journal of Clinical
Epidemiology, 63(8), e1-e37. doi:10.1016/j.jclinepi.2010.03.004

References 239
Morisky, D. E., Green, L. W., & Levine, D. M. (1986). Concurrent and predictive validity
of a self-reported measure of medication adherence. Medical Care, 67-74.
Retrieved from
http://www.jstor.org/stable/pdf/3764638.pdf?refreqid=excelsior:423e1bd531549c
50a52f313b21506624.

Munro, S., Lewin, S., Swart, T., & Volmink, J. (2007). A review of health behaviour
theories: How useful are these for developing interventions to promote long-term
medication adherence for TB and HIV/AIDS? BMC Public Health, 7, 104-104.
doi:10.1186/1471-2458-7-104

Murtagh, F. E. M., Addington-Hall, J., & Higginson, I. J. (2007). The prevalence of


symptoms in end-stage renal disease: A systematic review. Advances in Chronic
Kidney Disease, 14(1), 82-99. doi:10.1053/j.ackd.2006.10.001

Nakai, S., Morita, O., Iseki, K., Kikuchi, K., Kubo, K., Suzuki, K., . . . Ohmori, H.
(2004). An overview of regular dialysis treatment in Japan (as of 31 December
2002). Therapeutic Apheresis and Dialysis, 8(5), 358-382. doi:10.1111/j.1526-
0968.2004.00181.x

Nasution, A., Sulaiman, S. A. S., & Shafie, A. (2013). Cost-effectiveness of clinical


pharmacy education on infection management among patients with chronic kidney
disease in an Indonesian hospital. Value in Health Regional Issues, 2(1), 43-47.
doi:10.1016/j.vhri.2013.02.009

National Kidney Foundation. (2016). End stage renal disease in the United States.
Retrieved from National Kidney Foundation,
https://www.kidney.org/news/newsroom/factsheets/End-Stage-Renal-Disease-in-
the-US

Nguyen, B. (2013). The common causes of chronic kidney disease. Retrieved from
http://www.t4ghcm.org.vn/benh-man-tinh-khong-lay/nguyen-nhan-thuong-gap-
gay-suy-than-1644/

Nguyen, D. (1985). Culture shock - A review of Vietnamese culture and its concepts of
health and disease. The Western Journal of Medicine, 142(3), 409-412. Retrieved
from http://qut.summon.serialssolutions.com/2.0.0/link.

Nguyen, H. (2014). About 10% of Vietnamese population has been diagnosed with
chronic kidney disease. Retrieved January 22nd, 2014 from
http://suythanman.vn/chia-se/khoang-10-dan-so-bi-suy-than-man-tinh.html

Nguyen, T. N. (2009). Factors related to eating behaviour of patients with hypertension


in Hanoi, Vietnam Unpublished M.Sc. Thesis. Burapha, Chon Buri, Thailand.

240 References
Nicholas, S. B., Vaziri, N. D., & Norris, K. C. (2013). What should be the blood pressure
target for patients with chronic kidney disease? Current Opinion in Cardiology,
28(4), 1-13. doi:10.1097/HCO.0b013e32836208c2

Norris, K. C., & Nicholas, S. B. (2015). Strategies for controlling blood pressure and
reducing cardiovascular disease risk in patients with chronic kidney disease.
Ethnicity & Disease, 25(4), 515-520. doi:10.18865/ed.25.4.515

Novak, M., Costantini, L., Schneider, S., & Beanlands, H. (2013). Approaches to self‐
management in chronic illness. Seminars in Dialysis, 26(2), 188-194.
doi:10.1111/sdi.12080

Ong, S. W., Jassal, S. V., Porter, E., Logan, A. G., & Miller, J. A. (2013). Using an
electronic self-management tool to support patients with chronic kidney disease
(CKD): A CKD clinic self-care model. Seminars in Dialysis, 26(2), 195-202.
doi:10.1111/sdi.12054

Orantes-Navarro, C. M., Herrera-Valdés, R., Almaguer-López, M., López-Marín, L.,


Vela-Parada, X. F., Hernandez-Cuchillas, M., & Barba, L. M. (2017). Toward a
comprehensive hypothesis of chronic interstitial nephritis in agricultural
communities. Advances in Chronic Kidney Disease, 24(2), 101-106.
doi:10.1053/j.ackd.2017.01.001

Orzech, K. M., Vivian, J., Huebner Torres, C., Armin, J., & Shaw, S. J. (2013). Diet and
exercise adherence and practices among medically underserved patients with
chronic disease: Variation across four ethnic groups. Health Education &
Behavior, 40(1), 56-66. doi:10.1177/1090198112436970

Paes-Barreto, J. G., Barreto Silva, M. I., Qureshi, A. R., Bregman, R., Cervante, V. F.,
Carrero, J. J., & Avesani, C. M. (2013). Can renal nutrition education improve
adherence to a low-protein diet in patients with stages 3 to 5 chronic kidney
disease? Journal of Renal Nutrition, 23(3), 164-171.
doi:10.1053/j.jrn.2012.10.004

Pagels, A. A., Söderkvist, B. K., Medin, C., Hylander, B., & Heiwe, S. (2012). Health-
related quality of life in different stages of chronic kidney disease and at initiation
of dialysis treatment. Health and Quality of Life Outcomes, 10(71), 1-11.
doi:10.1186/1477-7525-10-71

Pallant, J. F. (2013). SPSS survival manual: A step by step guide to data analysis using
IBM SPSS. Crows Nest, N.S.W: Allen & Unwin.

References 241
Park, J. I., Baek, H., & Jung, H. H. (2016). Prevalence of chronic kidney disease in
Korea: The Korean National Health and Nutritional Examination Survey 2011–
2013. Journal of Korean Medical Science, 31(6), 915-923.
doi:10.3346/jkms.2016.31.6.915

Patterson, M. S., Umstattd Meyer, M. R., Beaujean, A. A., & Bowden, R. G. (2014).
Using the Social Cognitive Theory to understand physical activity among dialysis
patients. Rehabilitation Psychology, 1-11. doi:10.1037/a0037002

Peduzzi, P., Henderson, W., Hartigan, P., & Lavori, P. (2002). Analysis of randomized
controlled trials. Epidemiologic Reviews, 24(1), 26-38. doi:10.1093/epirev/24.1.26

Peeters, M. J., van Zuilen, A. D., van den Brand, J. A., Bots, M. L., van Buren, M., Ten
Dam, M. A., . . . Sluiter, H. E. (2014). Nurse practitioner care improves renal
outcome in patients with CKD. Journal of the American Society of Nephrology,
25(2), 390-398. doi:10.1681/ASN.2012121222

Peñarrieta, M. I., Flores-Barrios, F., Gutiérrez-Gómez, T., Piñones-Martínez, S.,


Resendiz–Gonzalez, E., & maría Quintero-Valle, L. (2015). Self-management and
family support in chronic diseases. Journal of Nursing Education and Practice,
5(11), 73-80. doi:10.5430/jnep.v5n11p73

Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2015). Health promotion in nursing
practice. Boston: Pearson.

Pham, L., & Ziegert, K. (2016). Ways of promoting health to patients with diabetes and
chronic kidney disease from a nursing perspective in Vietnam: A
phenomenographic study. International Journal of Qualitative Studies on Health
and Well-being, 11(1), 1-11. doi:10.3402/qhw.v11.30722

Picariello, F., Moss-Morris, R., Macdougall, I. C., & Chilcot, J. (2017a). ‘It's when you're
not doing too much you feel tired’: A qualitative exploration of fatigue in end-
stage kidney disease. British Journal of Health Psychology, 1-23.
doi:10.1111/bjhp.12289

Picariello, F., Moss-Morris, R., Macdougall, I. C., & Chilcot, J. (2017b). The role of
psychological factors in fatigue among end-stage kidney disease patients: A
critical review. Clinical Kidney Journal, 10(1), 79-88. doi:10.1093/ckj/sfw113

Plantinga, L. C., Boulware, L. E., Coresh, J., Stevens, L. A., Miller, E. R., Saran, R., . . .
Powe, N. R. (2008). Patient awareness of chronic kidney disease: Trends and
predictors. Archives of Internal Medicine, 168(20), 2268-2275.
doi:10.1001/archinte.168.20.2268

242 References
Polit, D. F., & Gillespie, B. M. (2009). The use of the intention-to-treat principle in
nursing clinical trials. Nursing Research, 58(6), 391-399.
doi:10.1097/NNR.0b013e3181bf1505

Polit, D. F., & Yang, F. (2016). Measurement and the measurement of change: A primer
for the health professions. Philadelphia: Wolters Kluwer Health.

Price, V., & Archbold, J. (1995). Development and application of social learning theory.
British Journal of Nursing, 4(21), 1263-1268. Retrieved from
http://qut.summon.serialssolutions.com/2.0.0/link.

Prochaska, J. O., DiClemente, C. C., & Norcross, J. C. (1992). In search of how people
change: Applications to addictive behaviors. American Psychologist, 47(9), 1102.

Pron, A., Zygmont, D., Bender, P., & Black, K. (2008). Educating the educators at Hue
medical college, Hue, Viet Nam. International Nursing Review, 55(2), 212-218.
doi:10.1111/j.1466-7657.2007.00579.x

Qobadi, M., Besharat, M. A., Rostami, R., & Rahiminezhad, A. (2015). Health literacy
and medical adherence in hemodialysis patients: The mediating role of disease-
specific knowledge. Thrita, 4(1), 1-6. doi:10.5812/thrita.26195

Quan, H., Li, B., Couris, C. M., Fushimi, K., Graham, P., Hider, P., . . . Sundararajan, V.
(2011). Updating and validating the charlson comorbidity index and score for risk
adjustment in hospital discharge abstracts using data from 6 countries. American
Journal of Epidemiology, 173(6), 676-682. doi:10.1093/aje/kwq433

Ramachandran, R., & Jha, V. (2013). Kidney transplantation is associated with


catastrophic out of pocket expenditure in India. PLoS One, 8(7), 1-6.
doi:10.1371/journal.pone.0067812

Ramal, E., Petersen, A. B., Ingram, K. M., & Champlin, A. M. (2012). Factors that
influence diabetes self-management in Hispanics living in low socioeconomic
neighborhoods in San Bernardino, California. Journal of Immigrant and Minority
Health, 14(6), 1090-1096. doi:10.1007/s10903-012-9601-y

Relton, C., Torgerson, D., O'Cathain, A., & Nicholl, J. (2010). Rethinking pragmatic
randomised controlled trials: Introducing the "cohort multiple randomised
controlled trial" design. British Medical Journal, 340(7753), 963-967.
doi:10.1136/bmj.c1066

References 243
Renkema, K. Y., Winyard, P. J., Skovorodkin, I. N., Levtchenko, E. N., Hinyckx, A.,
Jeanpierre, C., . . . Bongers, M. H. F. (2011). Novel perspectives for investigating
congenital anomalies of the kidney and urinary tract (CAKUT). Nephrology
Dialysis Transplantation, 26(12), 3843-3851. doi:10.1093/ndt/gfr655

Rich, A., Brandes, K., Mullan, B., & Hagger, M. S. (2015). Theory of planned behavior
and adherence in chronic illness: A meta-analysis. Journal of Behavioral
Medicine, 38(4), 673-688. doi:10.1007/s10865-015-9644-3

Riegel, B., & Carlson, B. (2002). Facilitators and barriers to heart failure self-care.
Patient Education and Counseling, 46(4), 287-295. Retrieved from https://ac-els-
cdn-com.ezp01.library.qut.edu.au.

Riegel, B., & Dickson, V. V. (2008). A situation-specific theory of heart failure self-care.
Journal of Cardiovascular Nursing, 23(3), 190-196. Retrieved from
http://ovidsp.tx.ovid.com.ezp01.library.qut.edu.au/sp-3.27.1a/ovidweb.cgi.

Roderick, P., Roth, M., & Mindell, J. (2011). Prevalence of chronic kidney disease in
England: Findings from the 2009 health survey for England. Journal Epidemiol
Community Health, 65(Suppl 2), A12-A12. doi:10.1136/jech.2011.143586.26

Rosenstock, I. M., Strecher, V. J., & Becker, M. H. (1988). Social learning theory and the
health belief model. Health Education & Behavior, 15(2), 175-183. Retrieved
from http://heb.sagepub.com/content/15/2/175.full.pdf+html.

Rosland, A.-M., Kieffer, E., Israel, B., Cofield, M., Palmisano, G., Sinco, B., . . . Heisler,
M. (2008). When is social support important? The association of family support
and professional support with specific diabetes self-management behaviors.
Journal of General Internal Medicine, 23(12), 1992-1999. doi:10.1007/s11606-
008-0814-7

Ryan, P., & Sawin, K. J. (2009). The individual and family self-management theory:
Background and perspectives on context, process, and outcomes. Nursing
Outlook, 57(4), 217-225.e216. doi:10.1016/j.outlook.2008.10.004

Sadeghi, R., Tol, A., Moradi, A., Baikpour, M., & Hossaini, M. (2015). The impacts of a
health belief model-based educational program on adopting self-care behaviors in
pemphigus vulgaris patients. Journal of Education and Health Promotion, 4, 105.
doi:10.4103/2277-9531.171819

Samuel-Hodge, C. D., Headen, S. W., Skelly, A. H., Ingram, A. F., Keyserling, T. C.,
Jackson, E. J., . . . Elasy, T. A. (2000). Influences on day-to-day self-management
of type 2 diabetes among African-American women: Spirituality, the multi-

244 References
caregiver role, and other social context factors. Diabetes Care, 23(7), 928-933.
Retrieved from http://care.diabetesjournals.org/content/diacare/23/7/928.full.pdf.

Saturni, S., Bellini, F., Braido, F., Paggiaro, P., Sanduzzi, A., Scichilone, N., . . . Papi, A.
(2014). Randomized controlled trials and real life studies. Approaches and
methodologies: A clinical point of view. Pulmonary Pharmacology &
Therapeutics, 27(2), 129-138. doi:10.1016/j.pupt.2014.01.005

Schulman-Green, D., Jaser, S. S., Park, C., & Whittemore, R. (2016). A metasynthesis of
factors affecting self-management of chronic illness. Journal of Advanced
Nursing, 72(7), 1469-1489. doi:10.1111/jan.12902

Schwartz, C. E., Andresen, E. M., Nosek, M. A., & Krahn, G. L. (2007). Response shift
theory: Important implications for measuring quality of life in people with
disability. Archives of Physical Medicine and Rehabilitation, 88(4), 529-536.
doi:10.1016/j.apmr.2006.12.032

Schwarzer, R. (2014). Self-efficacy: Thought control of action. London: Routledge.

Shanahan, M., & Brayshaw, D. L. (1995). Are nurses aware of the differing health care
needs of Vietnamese patients? Journal of Advanced Nursing, 22(3), 456-464.
doi:10.1046/j.1365-2648.1995.22030456.x

Sharaf El Din, U. A. A., Salem, M. M., & Abdulazim, D. O. (2016). Stop chronic kidney
disease progression: Time is approaching. World Journal of Nephrology, 5(3),
258-273. doi:10.5527/wjn.v5.i3.258

Shillabeer, A. G. (2016). The Health of Vietnam. Singapore: Springer Verlag.

Shortridge-Baggett, L. M., & van der Bijl, J. J. (1996). International collaborative


research on management self-efficacy in diabetes mellitus. The Journal of the
New York State Nurses' Association, 27(3), 9-14. Retrieved from
http://europepmc.org/abstract/MED/9060718.

Shrout, P. E., & Fleiss, J. L. (1979). Intraclass correlations: Uses in assessing rater
reliability. Psychological Bulletin, 86(2), 420-428. doi:10.1037/0033-
2909.86.2.420

Siabani, S., Leeder, S. R., Davidson, P. M., Najafi, F., Hamzeh, B., Solimani, A., . . .
Driscoll, T. (2014). Translation and validation of the self-care of heart failure
index into Persian. The Journal of Cardiovascular Nursing, 29(6), E1-E5.
doi:10.1097/JCN.0000000000000121

References 245
Singapore Renal Registry. (2018). Singapore Renal Registry Annual Report 2016.
Retrieved from https://www.nrdo.gov.sg/docs/librariesprovider3/default-
document-library/singapore-renal-registry-annual-report-2016_1999-till-
2016_v5_online_final.pdf?sfvrsn=0

Singh, A. K., Farag, Y. M. K., Mittal, B. V., Subramanian, K. K., Reddy, S. R. K.,
Acharya, V. N., . . . Rajapurkar, M. M. (2013). Epidemiology and risk factors of
chronic kidney disease in India - Results from the SEEK (Screening and Early
Evaluation of Kidney Disease) study. BMC Nephrology, 14(1), 114-114.
doi:10.1186/1471-2369-14-114

Sol, B. G. M., van der Bijl, J. J., Banga, J.-D., & Visseren, F. L. J. (2005). Vascular risk
management through nurse-led self-management programs. Journal of Vascular
Nursing, 23(1), 20-24. doi:10.1016/j.jvn.2004.12.003

Song, Y., Ma, W., Yi, X., Wang, S., Sun, X., Tian, J., . . . Marley, G. (2013). Chronic
diseases knowledge and related factors among the elderly in Jinan, China. PLoS
One, 8(6), 1-9. doi:10.1371/journal.pone.0068599

Sontakke, S., Budania, R., Bajait, C., Jaiswal, K., & Pimpalkhute, S. (2015). Evaluation
of adherence to therapy in patients of chronic kidney disease. Indian Journal of
Pharmacology, 47(6), 668-671. doi:10.4103/0253-7613.169597

Sousa, V. D., & Rojjanasrirat, W. (2011). Translation, adaptation and validation of


instruments or scales for use in cross-cultural health care research: A clear and
user-friendly guideline. Journal of Evaluation in Clinical Practice, 17(2), 268-
274. doi:10.1111/j.1365-2753.2010.01434.x

Sperber, A. D., Devellis, R. F., & Boehlecke, B. (1994). Cross-cultural translation:


Methodology and validation. Journal of Cross-Cultural Psychology, 25(4), 501-
524. doi:10.1177/0022022194254006

Stacciarini, T. S. G., & Pace, A. E. (2014). Translation, adaptation and validation of a


self-care scale for type 2 diabetes patients using insulin. Acta Paulista de
Enfermagem, 27(3), 221-229. doi:10.1590/1982-0194201400038

Stamp, K. D., Dunbar, S. B., Clark, P. C., Reilly, C. M., Gary, R. A., Higgins, M., &
Ryan, R. M. (2016). Family partner intervention influences self-care confidence
and treatment self-regulation in patients with heart failure. European Journal of
Cardiovascular Nursing, 15(5), 317-327. doi:10.1177/1474515115572047

Stuckey, H. L., Vallis, M., Kovacs Burns, K., Mullan-Jensen, C. B., Reading, J. M.,
Kalra, S., . . . Peyrot, M. (2015). “I do my best to listen to patients”: Qualitative

246 References
insights into DAWN2 (Diabetes psychosocial care from the perspective of health
care professionals in the second diabetes attitudes, wishes and needs study).
Clinical Therapeutics, 37(9), 1986-1998. doi:10.1016/j.clinthera.2015.06.010

Tabachnick, B. G., & Fidell, L. S. (2013). Using multivariate statistics (6th ed.). Boston:
Pearson Education.

Teng, H.-L., Yen, M., Fetzer, S., Sung, J.-M., & Hung, S.-Y. (2013). Effects of targeted
interventions on lifestyle modifications of chronic kidney disease patients:
Randomized controlled trial. Western Journal of Nursing Research, 35(9), 1107-
1127. doi:10.1177/0193945913486202

Thirsk, L. M., & Clark, A. M. (2014). What is the 'self' in chronic disease self-
management? International Journal of Nursing Studies, 51(5), 691-693.
doi:10.1016/j.ijnurstu.2013.10.008

Thomas, N., & Bryar, R. (2013). An evaluation of self-management package for people
with diabetes at risk of chronic kidney disease. Primary Health Care Research
and Development, 14(3), 270-280. doi:10.1017/S1463423612000588

Thomas, N., Bryar, R., & Makanjuola, D. (2008). Development of a self-management


package for people with diabetes at risk of chronic kidney disease (CKD). Journal
of Renal Care, 34(3), 151-158. doi:10.1111/j.1755-6686.2008.00032.x

Thomas, R., Kanso, A., & Sedor, J. R. (2008). Chronic kidney disease and its
complications. Primary Care, 35(2), 329-vii. doi:10.1016/j.pop.2008.01.008

Thuan, N. T. B., Lofgren, C., Lindholm, L., & Chuc, N. T. K. (2008). Choice of
healthcare provider following reform in Vietnam. BMC Health Services Research,
8(162), 1-9. doi:10.1186/1472-6963-8-162

Thuy, T. T., & Hong, N. T. (2017). The change of the ancestor worship belief in the
Vietnamese family nowadays. Edukacja Humanistyczna, 36(1), 145-152.

Toobert, D. J., Hampson, S. E., & Glasgow, R. E. (2000). The summary of diabetes self-
care activities measure: Results from 7 studies and a revised scale. Diabetes Care,
23(7), 943-950. doi:10.2337/diacare.23.7.943

Toth-Manikowski, S., & Atta, M. G. (2015). Diabetic kidney disease: Pathophysiology


and therapeutic targets. Journal of Diabetes Research, 2015, 16.
doi:10.1155/2015/697010

References 247
Tsai, W.-C., Wu, H.-Y., Peng, Y.-S., Yang, J.-Y., Chen, H.-Y., Chiu, Y.-L., . . . Chien,
K.-L. (2017). Association of intensive blood pressure control and kidney disease
progression in nondiabetic patients with chronic kidney disease: A systematic
review and meta-analysis. JAMA Internal Medicine, 177(6), 792-799.
doi:10.1001/jamainternmed.2017.0197

Tsay, S., & Healstead, M. (2002). Self-care self-efficacy, depression, and quality of life
among patients receiving hemodialysis in Taiwan. International Journal of
Nursing Studies, 39(3), 245-251. doi:10.1016/S0020-7489(01)00030-X

Tsay, S. L. (2003). Self‐ efficacy training for patients with end‐ stage renal disease.
Journal of Advanced Nursing, 43(4), 370-375. doi:10.1046/j.1365-
2648.2003.02725.x

Tuan, P. L. (2015). Vietnam health system and health infrastructure: Achievements,


challenges and orientation. Retrieved from
http://www.designandhealth.com/upl/files/122262/pam-le-tuan-2015.pdf.

Tuot, D. S., Davis, E., Velasquez, A., Banerjee, T., & Powe, N. R. (2013). Assessment of
printed patient-educational materials for chronic kidney disease. American
Journal of Nephrology, 38(3), 184-194. doi:10.1159/000354314

Tuot, D. S., Plantinga, L. C., Judd, S. E., Muntner, P., Hsu, C.-y., Warnock, D. G., . . .
McClellan, W. M. (2013). Healthy behaviors, risk factor control and awareness of
chronic kidney disease. American Journal of Nephrology, 37(2), 135-143.
doi:10.1159/000346712

Turner, J. M., Bauer, C., Abramowitz, M. K., Melamed, M. L., & Hostetter, T. H. (2012).
Treatment of chronic kidney disease. Kidney International, 81(4), 351-362.
doi:10.1038/ki.2011.380

Tuyen, D. G. (2011). End-stage renal disease and kidney replacement therapy in Bach
Mai hospital Hanoi - Vietnam. Retrieved from http://www.hdf-
j.jp/pdf/02Do%20Gia%20Tuyen%20(Vietnam).pdf

van de Laar, K. E. W., & van der Bijl, J. J. (2001). Strategies enhancing self-efficacy in
diabetes education: A review. Scholarly Inquiry for Nursing Practice, 15(3), 235-
248. Retrieved from
http://gateway.library.qut.edu.au/login?url=http://search.ebscohost.com/login.aspx
?direct=true&db=c8h&AN=2002045714&site=ehost-live&scope=site.

Van, K. N., Duangpaeng, S., Deenan, A., & Bonner, A. (2012). Examining the health-
related quality of life of people with end-stage kidney disease living in Hanoi,
Vietnam. Renal Society of Australasia Journal, 8(2), 27-33.

248 References
Van Zuilen, A., Blankestijn, P., van Buren, M., ten Dam, M., Kaasjager, K., Ligtenberg,
G., . . . Vervoort, G. (2011). Nurse practitioners improve quality of care in chronic
kidney disease: Two-year results of a randomised study. The Netherlands Journal
of Medicine, 69(11), 517-526. Retrieved from
https://www.researchgate.net/profile/Yvo_Sijpkens/publication/51883360_Nurse_
practitioners_improve_quality_of_care_in_chronic_kidney_disease_Two-
year_results_of_a_randomised_study/links.

Vanholder, R., Annemans, L., Brown, E., Gansevoort, R., Gout-Zwart, J. J., Lameire, N.,
. . . Zoccali, C. (2017). Reducing the costs of chronic kidney disease while
delivering quality health care: A call to action. Nature Reviews Nephrology, 13(7),
393-409. doi:10.1038/nrneph.2017.63

Vassalotti, J. A., Li, S., McCullough, P. A., & Bakris, G. L. (2010). Kidney early
evaluation program: A community-based screening approach to address
disparities in chronic kidney disease. Seminars in Nephrology, 30(1), 66-73.
doi:10.1016/j.semnephrol.2009.10.004

Von Korff, M., Gruman, J., Schaefer, J., Curry, S. J., & Wagner, E. H. (1997).
Collaborative management of chronic illness. Annals of Internal Medicine,
127(12), 1097-1102. doi:10.7326/0003-4819-127-12-199712150-00008

Vuong, T. M., & Tran, P. N. (2013). The classification of chronic kidney disease based
on estimated GFR follows (the modification of diet in renal disease) MDRD
formula in 2714 patients. Journal of Practical Medicine, 878(8), 43-45. Retrieved
from http://www.yhth.vn/phan-loai-cac-giai-doan-benh-than-man-theo-muc-loc-
cau-than-uoc-tinh-bang-cong-thuc-mdrd-o-2714-benh-nhan_t4768.aspx.

Walker, R., Marshall, M. R., & Polaschek, N. (2013). Improving self-management in


chronic kidney disease: A pilot study. Renal Society of Australasia Journal, 9(3),
116-125. Retrieved from http://qut.summon.serialssolutions.com/2.0.0/link.

Walker, R. C., Walker, S., Morton, R. L., Tong, A., Howard, K., & Palmer, S. C. (2017).
Māori patients' experiences and perspectives of chronic kidney disease: A New
Zealand qualitative interview study. BMJ Open, 7(1). doi:10.1136/bmjopen-2016-
013829

Ware, J., Kosinski, M., Bjorner, J., Turner-Bowker, D., Gandek, B., & Maruish, M.
(2008). SF-36v2 health survey: Administration guide for clinical trial
investigators. QualityMetric Incorporated, 1-34.

Ware, J. H., & Hamel, M. B. (2011). Pragmatic trials — Guides to better patient care?
The New England Journal of Medicine, 364(18), 1685-1687.
doi:10.1056/NEJMp1103502

References 249
Washington, T., Zimmerman, S., & Browne, T. (2016). Factors associated with chronic
kidney disease self-management. Social Work in Public Health, 31(2), 58-69.
doi:10.1080/19371918.2015.1087908

Webster, A. C., Nagler, E. V., Morton, R. L., & Masson, P. (2017). Chronic Kidney
Disease. The Lancet, 389(10075), 1238-1252. doi:10.1016/S0140-6736(16)32064-
5

Weeks, A., Swerissen, H., & Belfrage, J. (2007). Issues, challenges, and solutions in
translating study instruments. Evaluation Review, 31(2), 153-165. Retrieved from
http://erx.sagepub.com/content/31/2/153.full.pdf+html.

Welch, J. L., Ellis, R. J. B., Perkins, S. M., Johnson, C. S., Zimmerman, L. M., Russell,
C. L., . . . Decker, B. S. (2016). Knowledge and awareness among patients with
chronic kidney disease stage 3. Nephrology Nursing Journal, 43(6), 513-519.
Retrieved from http://qut.summon.serialssolutions.com/2.0.0/link.

Welch, J. L., Johnson, M., Zimmerman, L., Russell, C. L., Perkins, S. M., & Decker, B.
S. (2014). Self-management interventions in stages 1 to 4 chronic kidney disease:
An integrative review. Western Journal of Nursing Research, 1-27.
doi:0.1177/0193945914551007

Wells, J. R., & Anderson, S. T. (2011). Self-efficacy and social support in African
Americans diagnosed with end stage renal disease. The ABNF Journal, 22(1), 9-
12. Retrieved from http://qut.summon.serialssolutions.com/2.0.0/link.

Wembenyui, C. F. (2017). Examining knowledge and self-management of chronic kidney


disease in a primary health care setting: Validation of two instruments Master's
Thesis. Queensland University of Technology. Retrieved from
https://eprints.qut.edu.au/114078/1/Colette_Wembenyui_Thesis.pdf

Wen, C. P., Cheng, T. Y. D., Tsai, M. K., Chang, Y. C., Chan, H. T., Tsai, S. P., . . . Hsu,
Y. H. (2008). All-cause mortality attributable to chronic kidney disease: a
prospective cohort study based on 462 293 adults in Taiwan. The Lancet,
371(9631), 2173-2182. Retrieved from
http://www.sciencedirect.com/science/article/pii/S0140673608609526#.

Wen, L. K., Parchman, M. L., & Shepherd, M. D. (2004). Family support and diet
barriers among older Hispanic adults with type 2 diabetes. Family Medicine, 36,
423-430. Retrieved from
https://www.stfm.org/fmhub/fm2004/June/Lonnie423.pdf.

250 References
Weng, L., Dai, Y., Huang, H., & Chiang, Y. (2010). Self-efficacy, self-care behaviours
and quality of life of kidney transplant recipients. Journal of Advanced Nursing,
66(4), 828-838. doi:10.1111/j.1365-2648.2009.05243.x

White, C., & McDonnell, H. (2014). Psychosocial distress in patients with end-stage
kidney disease. Journal of Renal Care 40(1), 74-81. doi:10.1111/jorc.12054

White, S. L. M. P. H., McGeechan, K. M., Jones, M. P., Cass, A. P. F., Chadban, S. J. P.


F., Polkinghorne, K. R. F., . . . Roderick, P. J. M. D. F. (2008). Socioeconomic
disadvantage and kidney disease in the United States, Australia, and Thailand.
American Journal of Public Health, 98(7), 1306-1313. Retrieved from
http://gateway.library.qut.edu.au/login?url=http://search.proquest.com.

Whitehead, L., Jacob, E., Towell, A., Abu-Qamar, M., & Cole-Heath, A. (2017). The role
of the family in supporting the self-management of chronic conditions: A
qualitative systematic review. Journal of Clinical Nursing, 1-9.
doi:10.1111/jocn.13775

Whittemore, R. (2005). Analysis of integration in nursing science and practice. Journal of


Nursing Scholarship, 37(3), 261-267. doi:10.1111/j.1547-5069.2005.00045.x

WHO. (2014). Noncommunicable diseases country profiles: Vietnam. Retrieved 20th


February 2015, from World Health Organization
http://www.who.int/nmh/countries/vnm_en.pdf

WHO. (2015). The top 10 causes of death. Retrieved 20th February 2015, from World
Health Organization
http://www.who.int/mediacentre/factsheets/fs310/en/index2.html

Wierdsma, J., van Zuilen, A., & van der Bijl, J. (2011). Self-efficacy and long-term
medication use in patients with chronic kidney disease. Journal of Renal Care,
37(3), 158-166. doi:10.1111/j.1755-6686.2011.00227.x

Wild, S., Roglic, G., Green, A., Sicree, R., & King, H. (2004). Global prevalence of
diabetes: Estimates for the year 2000 and projections for 2030. Diabetes Care,
27(5), 1047-1053. Retrieved from
http://care.diabetesjournals.org/content/27/5/1047.full.pdf+html.

Wilde, M. H., & Garvin, S. (2007). A concept analysis of self-monitoring. Journal of


Advanced Nursing, 57(3), 339-350. doi:10.1111/j.1365-2648.2006.04089.x

Williams, A., Manias, E., Walker, R., & Gorelik, A. (2012). A multifactorial intervention
to improve blood pressure control in co-existing diabetes and kidney disease: A

References 251
feasibility randomized controlled trial. Journal of Advanced Nursing, 68(11),
2515-2525. doi:10.1111/j.1365-2648.2012.05950.x

World Kidney Day. (2015). Chronic kidney disease. Retrieved from


http://www.worldkidneyday.org/faqs/chronic-kidney-disease/

Wright, J., & Hutchison, A. (2009). Cardiovascular disease in patients with chronic
kidney disease. Vascular Health and Risk Management, 5, 713-722. Retrieved
from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2742701/.

Wright, J. A., Wallston, K. A., Elasy, T. A., Ikizler, T. A., & Cavanaugh, K. L. (2011).
Development and results of a kidney disease knowledge survey given to patients
with CKD. American Journal of Kidney Diseases, 57(3), 387-395.
doi:10.1053/j.ajkd.2010.09.018

Wright Nunes , J. A., Wallston, K. A., Eden, S. K., Shintani, A. K., Ikizler, T. A., &
Cavanaugh, K. L. (2011). Associations among perceived and objective disease
knowledge and satisfaction with physician communication in patients with
chronic kidney disease. Kidney International, 80(12), 1344-1351.
doi:10.1038/ki.2011.240

Wu, S. F. V., Courtney, M., Edwards, H., McDowell, J., Shortridge-Baggett, L. M., &
Chang, P. J. (2007). Self-efficacy, outcome expectations and self-care behaviour
in people with type 2 diabetes in Taiwan. Journal of Clinical Nursing, 16(11c),
250-257. doi:10.1111/j.1365-2702.2006.01930.x

Wu, S. F. V., Hsieh, N. C., Lin, L. J., & Tsai, J. M. (2016). Prediction of self-care
behaviour on the basis of knowledge about chronic kidney disease using self-
efficacy as a mediator. Journal of Clinical Nursing, 25(17-18), 2609-2618.
doi:10.1111/jocn.13305

Wu, S. F. V., Lee, M. C., Liang, S. Y., Lu, Y. Y., Wang, T. J., & Tung, H. H. (2011).
Effectiveness of a self-efficacy program for persons with diabetes: A randomized
controlled trial. Nursing & Health Sciences, 13(3), 335-343. doi:10.1111/j.1442-
2018.2011.00625.x

Wu, S. V., Courtney, M., Edwards, H., McDowell, J., Shortridge-Baggett, L. M., &
Chang, P. (2008). Psychometric properties of the Chinese version of the perceived
therapeutic efficacy scale for type 2 diabetes. Journal of the Formosan Medical
Association, 107(3), 232-238. Retrieved from
http://www.sciencedirect.com/science/article/pii/S0929664608601412.

252 References
Wyld, M. L., Chadban, S. J., & Morton, R. L. (2016). Improving our understanding of
quality of life in chronic kidney disease. American Journal of Kidney Diseases,
67(6), 820-821. doi:10.1053/j.ajkd.2016.03.412

Xu, Y., Savage, C., Toobert, D., Pan, W., & Whitmer, K. (2008). Adaptation and testing
of instruments to measure diabetes self-management in people with type 2
diabetes in Mainland China. Journal of Transcultural Nursing, 19(3), 234-242.
doi:10.1177/1043659608319239

Yen, M., Huang, J. J., & Teng, H. L. (2008). Education for patients with chronic kidney
disease in Taiwan: A prospective repeated measures study. Journal of Clinical
Nursing, 17(21), 2927-2934. doi:10.1111/j.1365-2702.2008.02348.x

Yoo, H., Kim, C. J., Jang, Y., & You, M. (2011). Self-efficacy associated with self-
management behaviours and health status of South Koreans with chronic diseases.
International Journal of Nursing Practice, 17(6), 599-606. doi:10.1111/j.1440-
172X.2011.01970.x

You-qun, H., Rong, G., Yong-shu, D., Qing-hua, Y., Wen-xing, F., Ya-ping, L., . . . Fang,
L. (2014). Charlson comorbidity index helps predict the risk of mortality for
patients with type 2 diabetic nephropathy. Biomedicine & Biotechnology Journal,
15(1), 58-66. doi:10.1631/jzus.B1300109

Yu, D. S. F., Lee, D. T. F., & Woo, J. (2004). Issues and challenges of instrument
translation. Western Journal of Nursing Research, 26(3), 307-320.
doi:10.1177/0193945903260554

Zhang, L., Zhang, P., Wang, F., Zuo, L., Zhou, Y., Shi, Y., . . . Wang, H. (2008).
Prevalence and factors associated with CKD: A population study from Beijing.
American Journal of Kidney Diseases, 51(3), 373-384.
doi:10.1053/j.ajkd.2007.11.009

References 253
Appendices

Appendix 1. Author’s Permission for Using Original version of the KiKS

254 Appendices
Appendix 2. Author’s Permission for Using Original version of the CKD-SM

Appendices 255
Appendix 3. Original English Kidney Disease Knowledge Survey (E.KiKS)

256 Appendices
Appendix 4. English Version of the Chronic Kidney Disease Self-Management

Appendices 257
Appendix 5. Phase 1 and 2 − QUT Ethics Approval

258 Appendices
Appendix 6. Phase 1 and 2 − Bach Mai Hospital Approval

Appendices 259
Appendix 7. Phase 2 − Participant Demographic Information Questionnaire

A. English

The following questions related to your personal information. Please tick (√) or fill in blanks
in the following questions:
1. Age: ………………………………….. years old (current age in Western calendar)
2. Gender: ☐ Male ☐ Female
3. Marital status:
☐ Married ☐ Single
☐ Separated ☐Divorced ☐ Widowed
4. What is your highest education level?
☐ Primary school (level 1 to 5)
☐ Secondary school (level 6 to 9)
☐ High school (level 10 to 12) ☐ Two years certificate
☐ College (3 years) ☐ Bachelor (University)
☐ Others (please specify) ……………………………………
5. What is your occupation?
☐ Professional ☐ Farmer
☐ Industrial worker ☐ Salesperson
☐ Home worker ☐ Retired
☐ Other jobs (please specify)………………………………………
6. How much of your income and your family income per month?
a. Your income per month: ……………………………………………VND
b. Your family income per month: ……………………………………..VND
7. How many people are living with you? ☐☐

260 Appendices
B. Vietnamese

Thông tin cá nhân

Xin Ông/Bà vui lòng cho biết một số thông tin về bản thân. Ông/Bà có thể đánh dấu √ hoặc
điền vào chỗ trống những thông tin cần thiết trong những câu hỏi sau đây:

1. Tuổi: ………………………………….. (tuổi hiện tại tính theo năm dương lịch)
2. Giới tính: ☐ Nam ☐ Nữ
3. Tình trạng hôn nhân:
☐ Lập gia đình ☐ Độc thân
☐ Ly thân ☐ Ly dị ☐ Góa bụa
4. Trình độ học vấn cao nhất của Ông/Bà là gì?
☐ Tiểu học (Cấp 1) ☐ Trung học cơ sở (Cấp 2)
☐ Trung học phổ thông (Cấp 3) ☐ Trung cấp
☐ Cao đẳng ☐ Đại học
☐ Trình độ khác (vui lòng ghi rõ) ……………………………………
5. Nghề nghiệp hiện tại của Ông/Bà là gì?
☐ Cán bộ và nhân viên văn phòng ☐ Nông dân
☐ Công nhân ☐ Buôn bán
☐ Nội trợ ☐ Hưu trí
☐ Nghề khác (xin vui lòng ghi rõ)………………………………………
6. Thu nhập cá nhân/của gia đình Ông/Bà mỗi tháng là bao nhiêu?
a. Thu nhập cá nhân/tháng: …………………………………………Việt Nam Đồng
b. Thu nhập của gia đình/tháng: ……………………………………..Việt Nam Đồng
7. Có bao nhiêu người sống cùng với Ông/Bà? ☐☐

Appendices 261
Appendix 8. Phase 2 − Kidney Disease Knowledge Survey

A. English
Below is a list of 28 questions related to your knowledge about chronic kidney disease,
please tick (√) in the choice if you think it is true.

1. On average, your blood pressure should be maintained:


□ 160/90
□ 150/100
□ 170/80
□ Lower than 130/80

2. Are there certain medications your doctor can prescribe which is useful for your
kidneys?
□ Correct □ Incorrect

3. Why it is not good for kidneys when there is too much protein in the urine?
□ It may cause scar the kidney
□ It is a sign of kidney damage
□ It is a sign of kidney damage AND can scar the kidney
□ It may cause urine infection
□ All of the above answers

4. Select the ONE MEDICATION from the list below that a person with CHRONIC
kidney disease should AVOID:
□ Lisinopril
□ Tylenol
□ Motrin / Ibuprofen
□ Vitamin E
□ Fe supplement tablets

5. If the kidney(s) fail, treatment might include (FOR THIS QUESTION you can
CHOOSE up to TWO ANSWERS):
□ Lung biopsy
□ Haemodialysis
□ Bronchoscopy
□ Colonoscopy
□ Kidney transplant

6. What does “GFR” stand for?


□ Glomerular Filtration Rate – gives us information about kidney function
□ Good Flow Renal – gives us information about urine flow from the kidney
□ Gain For Renal – gives us information if kidney function is improved
□ Glucose Function Rate – gives us information about your blood glucose level

7. Does CHRONIC kidney disease have different stages?


□ Correct □ Incorrect

262 Appendices
8. Does CHRONIC kidney disease increase risks of heart attack for people?
□ Correct □ Incorrect

9. Does CHRONIC kidney disease increase risks of mortality for people?


□ Correct □ Incorrect

This section is about WHAT THE KIDNEY DOES. Please select one answer to each
question below.
Correct Incorrect
10. Does the kidney make urine? □ □
11. Does the kidney clean blood? □ □
12. Does the kidney keep bones healthy □ □
13. Does the kidney keep a person from losing hair? □ □
14. Does the kidney help keep red blood cell counts normal? □ □
15. Does the kidney help keep blood pressure normal? □ □
16. Does the kidney help keep blood glucose normal? □ □
17. Does the kidney help keep potassium levels in the blood normal? □ □
18. Does the kidney help keep phosphorus levels in the blood normal? □ □

This section is about SYMPTOMS. Please select from the list, all of the symptoms a
person might have if they have chronic kidney disease or kidney failure.
Correct Incorrect
19. Increased fatigue? □ □
20. Shortness of breath? □ □
21. Metallic taste / bad taste in the mouth? □ □
22. Abnormal itching? □ □
23. Nausea and / or vomiting? □ □
24. Hair loss? □ □
25. Increased difficulty in sleeping? □ □
26. Weight loss? □ □
27. Confused? □ □
28. No symptoms at all? □ □
Thank you for completing this survey.

Appendices 263
B. Vietnamese

Khảo sát kiến thức về bệnh thận (KiKS)


Dưới đây là 28 câu hỏi liên quan đến những hiểu biết của Ông/Bà về bệnh thận mãn tính. Xin
Ông/Bà vui lòng đánh dấu √ vào câu trả lời mà Ông/Bà cho là đúng.
1. Tính trung bình, huyết áp của Ông/Bà nên duy trì ở mức:
□ 160/90 mmHg
□ 150/100 mmHg
□ 170/80 mmHg
□ Thấp hơn 130/80 mmHg

2. Có một số loại thuốc nhất định mà bác sỹ có thể chỉ định dùng để tốt cho thận của
Ông/Bà đúng không?
□ Đúng □ Không đúng

3. Tại sao quá nhiều đạm (protein) trong nước tiểu thì không tốt cho thận?
□ Nó có thể gây sẹo ở thận
□ Nó là dấu hiệu của tổn thương thận
□ Nó là dấu hiệu của tổn thương thận VÀ có thể gây sẹo ở thận
□ Nó có thể gây nhiễm trùng nước tiểu
□ Tất cả các ý kiến trên

4. Chọn MỘT THUỐC trong danh sách dưới đây mà một người mắc bệnh thận MÃN
TÍNH nên TRÁNH:
□ Lisinopril
□ Tylenol
□ Motrin / Ibuprofen
□ Vitamin E
□ Viên sắt
5. Nếu thận bị suy, điều trị bệnh có thể bao gồm (ĐỐI VỚI CÂU HỎI NÀY Ông/Bà có
thể chọn HAI ĐÁP ÁN):
□ Sinh thiết phổi
□ Chạy thận nhân tạo
□ Nội soi phế quản
□ Nội soi đại tràng
□ Ghép thận

6. “MLCT” có nghĩa là gì?


□ Tốc độ lọc cầu thận – cho chúng ta biết mức độ chức năng thận.
□ Lưu lượng tưới máu thận tốt – cho chúng ta biết dòng chảy của nước tiểu từ thận
□ Thận cải thiện – cho chúng ta biết chức năng thận đang được cải thiện
□ Tỷ lệ đường huyết – cho chúng ta biết về mức độ đường huyết

7. Bệnh thận MÃN TÍNH có các giai đoạn khác nhau đúng không?
□ Đúng □ Không đúng

8. Bệnh thận MÃN TÍNH làm tăng nguy cơ đau tim cho người bệnh đúng không?
□ Đúng □ Không đúng

264 Appendices
9. Bệnh thận MÃN TÍNH sẽ làm tăng nguy cơ tử vong cho con người đúng không?
□ Đúng □ Không đúng

Phần này sẽ hỏi về THẬN LÀM NHỮNG GÌ. Xin Ông/Bà vui lòng chọn một câu trả lời
bằng cách đánh dấu √ vào ô trống cho mỗi câu hỏi sau đây.
TT Câu hỏi Đúng Không đúng
10. Thận tạo ra nước tiểu đúng không? □ □
11. Thận làm sạch máu đúng không? □ □
12. Thận giữ cho xương khoẻ mạnh đúng không? □ □
13. Thận giữ cho không bị rụng tóc đúng không? □ □
14. Thận giúp giữ cho số lượng hồng cầu bình thường đúng □ □
không?
15. Thận giúp giữ cho huyết áp bình thường đúng không? □ □
16. Thận giúp cho việc giữ đường huyết bình thường đúng □ □
không?
17. Thận giúp cho việc giữ nồng độ Kali trong máu bình □ □
thường đúng không?
18. Thận giúp cho việc giữ nồng độ phốt-pho trong máu bình □ □
thường đúng không?

Phần này hỏi về TRIỆU CHỨNG. Ông/Bà vui lòng chọn từ danh sách dưới đây những
triệu chứng mà một người mắc bệnh thận mãn tính hoặc suy thận có thể có bằng cách
đánh dấu √ vào ô trống cho mỗi câu hỏi?
TT Câu hỏi Đúng Không đúng
19. Mệt mỏi tăng? □ □
20. Thở nông? □ □
21. Miệng có vị kim loại/có vị khó chịu trong miệng? □ □
22. Ngứa bất thường? □ □
23. Buồn nôn và/hoặc nôn mửa? □ □
24. Rụng tóc? □ □
25. Khó ngủ tăng lên? □ □
26. Gầy sút cân (Giảm cân)? □ □
27. Nhầm lẫn (Giảm trí nhớ)? □ □
28. Không có bất kỳ triệu chứng nào cả? □ □

Cảm ơn Ông/Bà đã hoàn thành bộ câu hỏi này.

Appendices 265
Appendix 9. Phase 2 − Chronic Kidney Disease Self-Management Instrument

A. English
The following questions are about how you feel and deal with chronic kidney disease. Please select one of four responses that best reflects
your real situation in the last three months. 1: Never 2: Sometimes 3: Usually 4: Always
No Questions Never Sometimes Usually Always
1 When I have questions of my kidney disease, I discuss what I have to do with my
family and friends
2 I will ask about the reasons which might cause the decrease of my kidney function
3 I inform my family and friends about my kidney treatment plan (such as, medications
changes, lifestyle changes).
4 I share my personal experience about kidney disease with other kidney disease patients
5 I understand results of laboratory tests which were used to evaluate my kidney’s
function (For example: creatinine, eGFR)
6 When my blood pressure increases (more than 140/90), I try to find out any possible
cause for this.
7 To prevent the increased workload on my kidneys, I am able to control what I eat
8 I follow the diet which was recommended by my doctors or nurses.
9 I solve problem related to my kidney disease by using different sources of information
(For example: calling my doctors or nurses, using internet, Google, group of supporting
patients with kidney diseases)
10 When I feel uncomfortable or disappointed, I discussed with someone about my
emotion
11 I integrate closely my treatment of kidney disease into my daily life
12 I quit habits which worsen my kidney function (for example smoking, drinking alcohol,
salty diet)
13 I follow doctors and nurses’ recommendations of doing exercises
14 I monitor my early warning signs and symptoms (for example: blood glucose, weight,
266 Appendices
shortness of breath, foot swelling)
15 I follow doctors and nurses’ recommendations about eating a balanced diet.
16 I asked doctors or nurses questions to understand clearly the plan of treating my kidney
disease
17 I follow doctors and nurses’ recommendations about not smoking
18 I have changed my lifestyle to prevent my kidney disease from getting worse
19 I seek help from others when I am feeling upset or frustrated.
20 I keep my kidney healthy by keeping my general health condition
21 I stop bad habits which might harm my kidneys (For example: smoking, eating salty
food, drinking)
22 I take steps to understand the risk factors associated with chronic kidney disease (such
as high blood pressure, diabetes, smoking, obesity).
23 I control my weight based on doctors or nurses advice
24 I make good choices about the type and amount of food I eat when I am not at home
(for example: in restaurant, party, eating out)
25 I can adjust my daily activities based on my kidney disease treatment plan when I am
not at home (for example: on travel, retreat)
26 When my body has new or worsen symptoms (for example: foot swelling, severe
headache, urinate frequently at night), I tried to find reasons
27 I still take all of my medications even when I am not at home
28 I feel I am able to attend social activities (wedding, party), even though I have kidney
disease.
29 I search for information about chronic kidney disease from different sources (for
example internet, leaflet, manual, kidney disease patient peer group)
30 I take my medications as prescribed by my doctors.
31 I take action when my early warning signs and symptoms get worse
32 When I have questions about my kidney disease, I discuss what to do with my doctors
or nurses.

Thank you for completing this questionnaire.

Appendices 267
B. Vietnamese

TỰ QUẢN LÝ BỆNH THẬN MÃN TÍNH (CKD - SM)


Dưới đây là 32 câu hỏi liên quan đến cảm giác và cách làm của Ông/Bà trong việc chống đỡ lại bệnh thận mãn tính. Ông/Bà vui lòng đánh
dấu √ vào một trong bốn lựa chọn (1: Không bao giờ, 2: Thỉnh thoảng, 3: Thường xuyên, 4: Luôn luôn) mà phản ánh tốt nhất tình trạng thực
tại của Ông/Bà trong ba tháng vừa qua.
Câu hỏi Không Thỉnh Thường Luôn
bao giờ thoảng xuyên luôn
1. Khi tôi có thắc mắc về tình trạng bệnh thận của mình, tôi thảo luận những gì cần làm với gia đình và bạn
bè của tôi.
2. Tôi sẽ hỏi bác sĩ hoặc điều dưỡng về các nguyên nhân có thể gây ra việc suy giảm chức năng thận của tôi.
3. Tôi thông báo với gia đình và bạn bè mình về kế hoạch điều trị bệnh thận của tôi (ví dụ như thay đổi
thuốc sử dụng, thay đổi lối sống).
4. Tôi chia sẻ kinh nghiệm của cá nhân mình về bệnh thận với những người khác cũng mắc bệnh thận.
5. Tôi hiểu ý nghĩa các chỉ số đánh giá chức năng thận của các xét nghiệm máu của tôi (ví dụ như
creatinine, eGFR).
6. Khi huyết áp của tôi tăng cao (lớn hơn 140/ 90), tôi cố gắng tìm ra các nguyên nhân có thể dẫn đến việc
này.
7. Để tránh gây hại cho thận, tôi nên kiểm soát chế độ ăn.
8. Tôi thực hiện chế độ ăn kiêng theo lời khuyên của bác sĩ hoặc điều dưỡng.
9. Tôi giải quyết các vấn đề liên quan đến bệnh thận của mình bằng cách sử dụng các nguồn thông tin khác
nhau (ví dụ như gọi cho bác sĩ hoặc điều dưỡng, sử dụng internet, Google, nhóm hỗ trợ người mắc bệnh
thận).
10. Khi tôi cảm thấy khó chịu hoặc thất vọng, tôi thảo luận với người khác về cảm xúc đó.
11. Tôi kết hợp chặt chẽ việc điều trị bệnh thận với mọi sinh hoạt hằng ngày của mình.
12. Tôi từ bỏ những thói quen làm xấu đi chức năng thận của tôi (ví dụ: hút thuốc lá, uống các loại đồ uống
có cồn, ăn mặn).
13. Tôi tập thể dục hàng ngày theo lời khuyên của bác sĩ và điều dưỡng.
14. Tôi theo dõi sát các triệu chứng và những dấu hiệu cảnh báo sớm về bệnh thận mãn tính và suy thận của
268 Appendices
Câu hỏi Không Thỉnh Thường Luôn
bao giờ thoảng xuyên luôn
mình (ví dụ như mức đường huyết, cân nặng, thở nông, phù chân).
15. Tôi thực hiện theo lời khuyên của bác sĩ và điều dưỡng về một chế độ ăn uống hợp lý.
16. Tôi hỏi bác sĩ hoặc điều dưỡng những câu hỏi để hiểu rõ kế hoạch điều trị bệnh thận của mình.
17. Tôi thực hiện theo lời khuyên của bác sĩ và điều dưỡng về việc không hút thuốc lá.
18. Tôi đã thay đổi lối sống của mình để bệnh thận không trở nên nặng hơn.
19. Tôi tìm kiếm sự giúp đỡ từ người khác khi cảm thấy khó chịu hoặc thất vọng.
20. Tôi giữ cho thận của mình khoẻ mạnh bằng cách giữ gìn sức khoẻ chung.
21. Tôi dừng những thói quen gây hại cho thận của mình (ví dụ: hút thuốc lá, sử dụng thức ăn nhiều muối,
uống rượu bia).
22. Tôi thực hiện các bước để hiểu về các yếu tố nguy cơ liên quan đến bệnh thận mãn tính (ví dụ: tăng
huyết áp, đái tháo đường, hút thuốc lá, béo phì).
23. Tôi kiểm soát cân nặng của mình theo lời khuyên của bác sĩ và điều dưỡng.
24. Tôi đưa ra những lựa chọn hợp lý về số lượng và loại thức ăn của mình khi tôi không ăn ở nhà (ví dụ: tại
các nhà hàng, tiệc tùng, ăn ở ngoài).
25. Tôi có thể điều chỉnh thói quen hàng ngày theo kế hoạch điều trị bệnh thận của mình khi không ở nhà
(ví dụ: đi du lịch, đi nghỉ dưỡng).
26. Khi cơ thể của tôi có những triệu chứng thực thể mới hoặc xấu đi (ví dụ như là phù nề chân, đau đầu
trầm trọng, đi tiểu nhiều vào ban đêm), tôi cố gắng tìm ra nguyên nhân của nó.
27. Tôi vẫn uống thuốc đầy đủ kể cả khi tôi không ở nhà.
28. Tôi cảm thấy mình có thể tham gia các sự kiện xã hội (ví dụ như đám cưới, tiệc tùng), mặc dù tôi mắc
bệnh thận.
29. Tôi tìm kiếm các thông tin về bệnh thận mãn tính từ nhiều nguồn khác nhau (ví dụ như là internet, tờ
rơi, sách hướng dẫn bỏ túi, nhóm hỗ trợ người mắc bệnh thận).
30. Tôi uống thuốc theo chỉ định của bác sĩ.
31. Tôi sẽ thực hiện hành động khi các dấu hiệu cảnh báo sớm và các triệu chứng về bệnh thận của mình trở
nên tồi tệ hơn.
32. Khi tôi có thắc mắc về bệnh thận của mình, tôi thảo luận những gì cần làm với bác sĩ hoặc điều dưỡng.

Cảm ơn Ông/Bà đã hoàn thành bộ câu hỏi này.

Appendices 269
Appendix 10. Phase 2 – Clinical Characteristics (from patients’ medical records)

A. English

1. eGFR:............... 2. Serum creatinine: ...............


3. Cholesterol: ............... 4. HbA1C: ...............
5. Blood pressure: ............... 6. Potassium: ...............
7. Calcium: ............... 8. Phosphate: ...............
9. Haemoglobin (Hb): ............... 10. Weight: ...............
11. Height: ............... 12. BMI: ...............

Current medications used:


Patient’s Medical Records

270 Appendices
B. Vietnamese
Xét nghiệm cận lâm sàng (từ hồ sơ người bệnh)
1. Chỉ số lọc cầu thận: ............... 2. Serum creatinine: ...............
3. Cholesterol: ............... 4. HbA1C: ...............
5. Huyết áp: ............... 6. K+: ...............
7. Ca+: ............... 8. Phospho: ...............
9. Huyết sắc tố (Hb): ............... 10. Cân nặng: ...............
11. Chiều cao: ............... 12. BMI: ...............

Thuốc về bệnh Thận mà Ông/Bà đang dùng:


Hồ sơ người bệnh

Appendices 271
Appendix 11. Permission to use the ‘Living with Reduced Kidney Function’

272 Appendices
Appendix 12. Permission to use the ‘Living Well with Chronic Kidney Disease’

Appendices 273
Appendix 13. Chronic Kidney Disease Booklet

A. English: Looking After My Kidney and Health

274 Appendices
Appendices 275
276 Appendices
Appendices 277
278 Appendices
Appendices 279
280 Appendices
Appendices 281
282 Appendices
Appendices 283
284 Appendices
Appendices 285
286 Appendices
Appendices 287
288 Appendices
Appendices 289
290 Appendices
Appendices 291
292 Appendices
Appendices 293
294 Appendices
Appendices 295
296 Appendices
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298 Appendices
Appendices 299
300 Appendices
Appendices 301
B. Vietnamese: Cẩm nang chăm sóc Thận và sức khỏe của tôi

302 Appendices
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304 Appendices
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306 Appendices
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308 Appendices
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310 Appendices
Appendices 311
312 Appendices
Appendices 313
314 Appendices
Appendices 315
316 Appendices
Appendices 317
318 Appendices
Appendices 319
320 Appendices
Appendices 321
322 Appendices
Appendices 323
324 Appendices
Appendices 325
326 Appendices
Appendices 327
328 Appendices
Appendices 329
Appendix 14. Agreement to use SF-36v2

330 Appendices
Appendix 15. Phase 3 − QUT Ethics Approval

Appendices 331
Appendix 16. Phase 3 − Bach Mai Hospital Approval

332 Appendices
Appendix 17. Registration ANZCTR Number

Appendices 333
Appendix 18. Phase 3 − Kidney Disease Knowledge Survey

A. English Baseline ☐
Week 8 ☐
Week 16 ☐
Below is a list of 28 questions related to your knowledge about chronic kidney disease,
please tick (√) in the choice if you think it is true.

1. On average, your blood pressure should be maintained:


□ 160/90
□ 150/100
□ 170/80
□ Lower than 130/80

2. Are there certain medications your doctor can prescribe which is useful for your
kidneys?
□ Correct □ Incorrect

3. Why it is not good for kidneys when there is too much protein in the urine?
□ It may cause scar the kidney
□ It is a sign of kidney damage
□ It is a sign of kidney damage AND it may cause scar the kidney
□ It may cause urine infection
□ All of the above answers

4. Choose ONE MEDICATION from the list below that people with CHRONIC kidney
disease should AVOID:
□ Lisinopril (type of hypertension medication)
□ Tylenol (type of pain reliever)
□ Motrin / Ibuprofen (a nonsteroidal anti-inflammatory drug)
□ Vitamin E
□ Fe supplement tablets

5. If the kidney(s) fail, treatment might include (FOR THIS QUESTION you can
CHOOSE up to TWO ANSWERS):
□ Lung biopsy
□ Haemodialysis
□ Bronchoscopy
□ Colonoscopy
□ Kidney transplant

6. What does “GFR” stand for?


□ Glomerular Filtration Rate – gives us information about kidney function
□ Good Flow Renal – gives us information about urine flow from the kidney
□ Gain For Renal – gives us information if your kidney function is improved
□ Glucose Function Rate – gives us information about your blood glucose level

7. Does CHRONIC kidney disease have different stages?

334 Appendices
□ Correct □ Incorrect

8. Does CHRONIC kidney disease increase risks of heart attack for people?
□ Correct □ Incorrect

9. Does CHRONIC kidney disease increase risks of mortality for people?


□ Correct □ Incorrect

This section is about WHAT THE KIDNEY DOES. Please select one answer to each
question below.
Correct Incorrect
10. Does the kidney make urine? □ □
11. Does the kidney clean blood? □ □
12. Does the kidney keep bones healthy □ □
13. Does the kidney keep a person from losing hair? □ □
14. Does the kidney help keep red blood cell counts normal? □ □
15. Does the kidney help keep blood pressure normal? □ □
16. Does the kidney help keep blood glucose normal? □ □
17. Does the kidney help keep potassium levels in the blood normal? □ □
18. Does the kidney help keep phosphorus levels in the blood normal? □ □

This section is about SYMPTOMS. Please select from the list, all of the symptoms a
person might have if they have chronic kidney disease or kidney failure.

Correct Incorrect
19. Increased fatigue? □ □
20. Shortness of breath? □ □
21. Metallic taste / bad taste in the mouth? □ □
22. Abnormal itching? □ □
23. Nausea and / or vomiting? □ □
24. Hair loss? □ □
25. Increased difficulty in sleeping? □ □
26. Weight loss? □ □
27. Confused? □ □
28. No symptoms at all? □ □

Thank you for completing this questionnaire.

Appendices 335
B. Vietnamese

Khảo sát kiến thức về bệnh thận Bắt đầu ☐


Tuần 8 ☐
Tuần 16 ☐

Dưới đây là 28 câu hỏi liên quan đến những hiểu biết của Ông/Bà về bệnh thận mãn tính.
Xin Ông/Bà vui lòng đánh dấu √ vào câu trả lời mà Ông/Bà cho là đúng.

1. Tính trung bình, huyết áp của Ông/Bà nên duy trì ở mức:
□ 160/90 mmHg
□ 150/100 mmHg
□ 170/80 mmHg
□ Thấp hơn 130/80 mmHg

2. Có một số loại thuốc nhất định mà bác sỹ có thể chỉ định dùng để tốt cho thận của
Ông/Bà đúng không?
□ Đúng □ Không đúng

3. Tại sao quá nhiều đạm (protein) trong nước tiểu thì không tốt cho thận?
□ Nó có thể gây sẹo ở thận
□ Nó là dấu hiệu của tổn thương thận
□ Nó là dấu hiệu của tổn thương thận VÀ có thể gây sẹo ở thận
□ Nó có thể gây nhiễm trùng nước tiểu
□ Tất cả các ý kiến trên

4. Chọn MỘT THUỐC trong danh sách dưới đây mà một người mắc bệnh thận
MÃN TÍNH nên TRÁNH:
□ Lisinopril (thuốc để kiểm soát huyết áp)
□ Tylenol (thuốc giảm đau)
□ Motrin / Ibuprofen (thuốc giảm đau, chống dị ứng)
□ Vitamin E
□ Viên sắt
5. Nếu thận bị suy, điều trị bệnh có thể bao gồm (ĐỐI VỚI CÂU HỎI NÀY Ông/Bà
có thể chọn HAI ĐÁP ÁN):
□ Sinh thiết phổi
□ Chạy thận nhân tạo
□ Nội soi phế quản
□ Nội soi đại tràng
□ Ghép thận

6. “MLCT” có nghĩa là gì?


□ Tốc độ lọc cầu thận – cho chúng ta biết mức độ chức năng thận.
□ Lưu lượng tưới máu thận tốt– cho chúng ta biết dòng chảy của nước tiểu từ thận
□ Thận cải thiện– cho chúng ta biết chức năng thận đang được cải thiện
□ Tỷ lệ chức năng đường máu – cho chúng ta biết về mức độ đường huyết

7. Bệnh thận MÃN TÍNH có các giai đoạn khác nhau đúng không?
□ Đúng □ Không đúng

336 Appendices
8. Bệnh thận MÃN TÍNH làm tăng nguy cơ đau tim cho người bệnh đúng không?
□ Đúng □ Không đúng

9. Bệnh thận MÃN TÍNH sẽ làm tăng nguy cơ tử vong cho con người đúng không?
□ Đúng □ Không đúng

Phần này sẽ hỏi về THẬN LÀM NHỮNG GÌ. Xin Ông/Bà vui lòng chọn một câu trả
lời bằng cách đánh dấu √ vào ô trống cho mỗi câu hỏi sau đây.
TT Câu hỏi Đúng Không đúng
10. Thận tạo ra nước tiểu đúng không? □ □
11. Thận làm sạch máu đúng không? □ □
12. Thận giữ cho xương khoẻ mạnh đúng không? □ □
13. Thận giữ cho không bị rụng tóc đúng không? □ □
14. Thận giúp giữ cho số lượng hồng cầu bình thường đúng □ □
không?
15. Thận giúp giữ cho huyết áp bình thường đúng không? □ □
16. Thận giúp cho việc giữ đường huyết bình thường đúng □ □
không?
17. Thận giúp cho việc giữ nồng độ Kali trong máu bình □ □
thường đúng không?
18. Thận giúp cho việc giữ nồng độ phốt-pho trong máu bình □ □
thường đúng không?

Phần này hỏi về TRIỆU CHỨNG. Ông/Bà vui lòng chọn từ danh sách dưới đây
những triệu chứng mà một người mắc bệnh thận mãn tính hoặc suy thận có thể có
bằng cách đánh dấu √ vào ô trống cho mỗi câu hỏi?
TT Câu hỏi Đúng Không đúng
19. Mệt mỏi tăng? □ □
20. Thở nông? □ □
21. Miệng có vị kim loại/có vị khó chịu trong miệng? □ □
22. Ngứa bất thường? □ □
23. Buồn nôn và/hoặc nôn mửa? □ □
24. Rụng tóc? □ □
25. Khó ngủ tăng lên? □ □
26. Gầy sút cân (Giảm cân)? □ □
27. Nhầm lẫn (Giảm trí nhớ)? □ □
28. Không có bất kỳ triệu chứng nào? □ □
Cảm ơn ông/Bà đã hoàn thành bộ câu hỏi này.

Appendices 337
Appendix 19. Phase 3 − Chronic Kidney Disease Self-Management Instrument

A. English Baseline ☐
Week 8 ☐
Week 16 ☐
The following questions are about how you feel and deal with chronic kidney disease. Please select one of four responses that best reflects
your real situation in the last three months. 1: Never 2: Sometimes 3: Usually 4: Always

No Questions Never Sometimes Usually Always


1 When I have questions of my kidney disease, I discuss what I have to do with my family and
friends.
2 I will ask about the reasons which might cause the decrease of my kidney function.
3 I inform my family and friends about my kidney treatment plan (such as, medications changes,
lifestyle changes).
4 I share my personal experience about kidney disease with other kidney disease patients.
5 I understand results of laboratory tests which were used to evaluate my kidney’s function (For
example: creatinine, eGFR).
6 When my blood pressure increases (more than 140/90), I try to find out any possible cause for
this.
7 To prevent the increased workload on my kidneys, I am able to control what I eat.
8 I follow the diet which was recommended by my doctors or nurses.
9 I solve problem related to my kidney disease by using different sources of information (For
example: calling my doctors or nurses, using internet, Google, group of supporting patients with
kidney diseases).
10 When I feel uncomfortable or disappointed, I discussed with someone about my emotion.
11 I integrate closely my treatment of kidney disease into my daily life.
12 I quit habits which worsen my kidney function (for example smoking, drinking alcohol, salty
diet).
13 I follow doctors and nurses’ recommendations of doing exercises.

338 Appendices
14 I monitor my early warning signs and symptoms (for example: blood glucose, weight, shortness
of breath, foot swelling).
15 I follow doctors and nurses’ recommendations about eating a balanced diet.
16 I asked doctors or nurses questions to understand clearly the plan of treating my kidney disease.
17 I follow doctors and nurses’ recommendations about not smoking.
18 I have changed my lifestyle to prevent my kidney disease from getting worse.
19 I seek help from others when I am feeling upset or frustrated.
20 I keep my kidney healthy by maintaining my overall health, such as controlling weight, eating
proper foods, and taking exercise activities.
21 I stop bad habits which might harm my kidneys (for example: smoking, eating salty food,
drinking).
22 I take steps to understand the risk factors associated with chronic kidney disease (such as
maintaining a healthy diet, controlling blood pressure, and taking medication).
23 I control my weight based on doctors or nurses advice.
24 I make good choices about the type and amount of food I eat when I am not at home (for
example: in restaurant, party, eating out).
25 I can adjust my daily activities based on my kidney disease treatment plan when I am not at
home (for example: on travel, retreat).
26 When my body has new or worsen symptoms (for example: foot swelling, severe headache,
urinate frequently at night), I tried to find reasons.
27 I still take all of my medications even when I am not at home.
28 I feel I am able to attend social activities (wedding, party), even though I have kidney disease.
29 I search for information about chronic kidney disease from different sources (for example
internet, leaflet, manual, kidney disease patient peer group).
30 I take my medications as prescribed by my doctors.
31 I take action when my early warning signs and symptoms get worse.
32 When I have questions about my kidney disease, I discuss what to do with my doctors or nurses.

Thank you for completing this questionnaire.

Appendices 339
B. Vietnamese

TỰ QUẢN LÝ BỆNH THẬN MÃN TÍNH Bắt đầu ☐


Tuần 8 ☐
Tuần 16 ☐
Dưới đây là 32 câu hỏi liên quan đến cảm giác và cách làm của Ông/Bà trong việc chống đỡ lại bệnh thận mãn tính. Ông/Bà vui lòng đánh
dấu √ vào một trong bốn lựa chọn (1: Không bao giờ, 2: Thỉnh thoảng, 3: Thường xuyên, 4: Luôn luôn) mà phản ánh tốt nhất tình trạng thực
tại của Ông/Bà trong ba tháng vừa qua.
Câu hỏi Không Thỉnh Thường Luôn
bao giờ thoảng xuyên luôn
1. Khi tôi có thắc mắc về tình trạng bệnh thận của mình, tôi thảo luận những gì cần làm với gia
đình và bạn bè của tôi.
2. Tôi sẽ hỏi bác sĩ hoặc điều dưỡng về các nguyên nhân có thể gây ra việc suy giảm chức năng
thận của tôi.
3. Tôi thông báo với gia đình và bạn bè mình về kế hoạch điều trị bệnh thận của tôi (ví dụ như thay
đổi thuốc sử dụng, thay đổi lối sống).
4. Tôi chia sẻ kinh nghiệm của cá nhân mình về bệnh thận với những người khác cũng mắc bệnh
thận.
5. Tôi biết được các chỉ số đánh giá chức năng thận của các xét nghiệm máu của tôi (ví dụ như
creatinine, eGFR).
6. Khi huyết áp của tôi tăng cao (lớn hơn 140/ 90), tôi cố gắng tìm ra các nguyên nhân có thể dẫn
đến việc này.
7. Để tránh gây hại cho thận, tôi nên kiểm soát chế độ ăn.
8. Tôi thực hiện chế độ ăn kiêng theo lời khuyên của bác sĩ hoặc điều dưỡng.
9. Tôi giải quyết các vấn đề liên quan đến bệnh thận của mình bằng cách sử dụng các nguồn thông
tin khác nhau (ví dụ như gọi cho bác sĩ hoặc điều dưỡng, sử dụng internet, Google, nhóm hỗ trợ
người mắc bệnh thận).
10. Khi tôi cảm thấy khó chịu hoặc thất vọng, tôi thảo luận với người khác về cảm xúc đó.
11. Tôi kết hợp chặt chẽ việc điều trị bệnh thận với mọi sinh hoạt hằng ngày của mình.
12. Tôi từ bỏ những thói quen làm xấu đi chức năng thận của tôi (ví dụ: hút thuốc lá, uống các loại
340 Appendices
Câu hỏi Không Thỉnh Thường Luôn
bao giờ thoảng xuyên luôn
đồ uống có cồn, ăn mặn).
13. Tôi tập thể dục hàng ngày theo lời khuyên của bác sĩ và điều dưỡng.
14. Tôi theo dõi sát các triệu chứng và những dấu hiệu cảnh báo sớm về bệnh thận mãn tính và suy
thận của mình (ví dụ như mức đường huyết, cân nặng, thở nông, phù chân).
15. Tôi thực hiện theo lời khuyên của bác sĩ và điều dưỡng về một chế độ ăn uống hợp lý.
16. Tôi hỏi bác sĩ hoặc điều dưỡng những câu hỏi để hiểu rõ kế hoạch điều trị bệnh thận của mình.
17. Tôi thực hiện theo lời khuyên của bác sĩ và điều dưỡng về việc không hút thuốc lá.
18. Tôi đã thay đổi lối sống của mình để bệnh thận không trở nên nặng hơn.
19. Tôi tìm kiếm sự giúp đỡ từ người khác khi cảm thấy khó chịu hoặc thất vọng.
20. Tôi giữ cho thận của mình khoẻ mạnh bằng cách giữ gìn sức khoẻ chung (ví dụ: kiểm soát cân
nặng, kiểm soát việc ăn uống, thực hiện việc tập thể dục.
21. Tôi dừng những thói quen gây hại cho thận của mình (ví dụ: hút thuốc lá, sử dụng thức ăn
nhiều muối, uống rượu bia).
22. Tôi thực hiện các bước để hiểu về các yếu tố nguy cơ liên quan đến bệnh thận mãn tính (ví dụ:
thực hiện chế độ ăn kiêng, kiểm soát huyết áp, uống thuốc).
23. Tôi kiểm soát cân nặng của mình theo lời khuyên của bác sĩ và điều dưỡng.
24. Tôi đưa ra những lựa chọn hợp lý về số lượng và loại thức ăn của mình khi tôi không ăn ở nhà
(ví dụ: tại các nhà hàng, tiệc tùng, ăn ở ngoài).
25. Tôi có thể điều chỉnh thói quen hàng ngày theo kế hoạch điều trị bệnh thận của mình khi không
ở nhà (ví dụ: đi du lịch, đi nghỉ dưỡng).
26. Khi cơ thể của tôi có những triệu chứng thực thể mới hoặc xấu đi (ví dụ như là phù nề chân,
đau đầu trầm trọng, đi tiểu nhiều vào ban đêm), tôi cố gắng tìm ra nguyên nhân của nó.
27. Tôi vẫn uống thuốc đầy đủ kể cả khi tôi không ở nhà.
28. Tôi cảm thấy mình có thể tham gia các sự kiện xã hội (ví dụ như đám cưới, tiệc tùng), mặc dù
tôi mắc bệnh thận.
29. Tôi tìm kiếm các thông tin về bệnh thận mãn tính từ nhiều nguồn khác nhau (ví dụ như là
internet, tờ rơi, sách hướng dẫn bỏ túi, nhóm hỗ trợ người mắc bệnh thận).
30. Tôi uống thuốc theo chỉ định của bác sĩ.
31. Tôi sẽ thực hiện hành động khi các dấu hiệu cảnh báo sớm và các triệu chứng về bệnh thận của

Appendices 341
Câu hỏi Không Thỉnh Thường Luôn
bao giờ thoảng xuyên luôn
mình trở nên tồi tệ hơn.
32. Khi tôi có thắc mắc về bệnh thận của mình, tôi thảo luận những gì cần làm với bác sĩ hoặc điều
dưỡng.

Cảm ơn Ông/Bà đã hoàn thành bộ câu hỏi này.

342 Appendices
Appendix 20. Phase 3 − Self-Efficacy for Managing Chronic Disease Instrument
A. English Baseline ☐
Week 8 ☐
Week 16 ☐

We would like to know how confident you are in doing certain activities. For each of the following questions, please choose the number that
corresponds to your confidence that you can do the tasks regularly at the present time. The numbers in the columns stand for:
1 = not at all confident 10 = totally confident

How CONFIDENT are you that you can Level of confidence


1 keep the fatigue caused by your disease from interfering with the 1 2 3 4 5 6 7 8 9 10
things you want to do?
2 keep the physical discomfort or pain of your disease from interfering 1 2 3 4 5 6 7 8 9 10
with the things you want to do?
3 keep the emotional distress caused by your disease from interfering 1 2 3 4 5 6 7 8 9 10
with the things you want to do?
4 keep any other symptoms or health problems you have from interfering 1 2 3 4 5 6 7 8 9 10
with the things you want to do?
5 do the different tasks and activities needed to manage your health 1 2 3 4 5 6 7 8 9 10
condition so as to reduce you need to see as doctor?
6 do things other than just taking medication to reduce how much you 1 2 3 4 5 6 7 8 9 10
illness affects your everyday life?

Thank you for completing this questionnaire.

Appendices 343
B. Vietnamese

Sự tự tin trong quản lý bệnh mãn tính Bắt đầu ☐


Tuần 8 ☐
Tuần 16 ☐

Chúng tôi muốn biết Ông/Bà tự tin như thế nào khi thực hiện những việc cụ thể sau. Đối với mỗi câu hỏi dưới đây, xin Ông/Bà hãy chọn con
số tương ứng với mức độ tự tin đối với những hoạt động được đề cập mà Ông/Bà có thể thực hiện một cách thường xuyên tại thời điểm hiện
tại. Các con số trong bảng dưới đây tương ứng thể hiên cho:
1 = không tự tin chút nào 10 = hoàn toàn tự tin
Ông/Bà tự tin như thế nào về việc Ông/bà có thể Mức độ tự tin
1 Giữ cho sự mệt mỏi do bệnh tật gây ra không gây ảnh hưởng đến những việc Ông/Bà 1 2 3 4 5 6 7 8 9 10
muốn làm?
2 Giữ cho những khó chịu về thể chất và cơn đau do bệnh tật gây ra không gây ảnh 1 2 3 4 5 6 7 8 9 10
hưởng đến những việc Ông/Bà muốn làm?
3 Giữ cho căng thẳng vì bệnh tật ảnh hưởng đến những việc Ông/Bà muốn làm? 1 2 3 4 5 6 7 8 9 10
4 Giữ cho những triệu chứng hoặc các vấn đề sức khỏe khác ảnh hưởng đến những việc 1 2 3 4 5 6 7 8 9 10
Ông/Bà muốn làm?
5 Làm những việc và những hoạt động cần thiết khác để kiểm soát tình trạng sức khỏe 1 2 3 4 5 6 7 8 9 10
của mình nhằm làm giảm việc phải đi khám bác sĩ của Ông/Bà?
6 Làm những việc khác hơn là chỉ uống thuốc để làm giảm ảnh hưởng của bệnh tật lên 1 2 3 4 5 6 7 8 9 10
cuộc sống hàng ngày?

Cảm ơn Ông/Bà đã hoàn thành bộ câu hỏi này.

344 Appendices
Appendix 21. Phase 3 − Health Related Quality of Life (SF-36v2)

A. English Baseline ☐
Week 16 ☐

These first questions are about your health now.


Please try to answer as accurately as you can.

1. In general, would you say your health is…


[READ RESPONSE CHOICES] (Circle one number)

Excellent ..............................................................................................................................1

Very good.............................................................................................................................2

Good.....................................................................................................................................3

Fair .......................................................................................................................................4

or Poor .................................................................................................................................5

2. Compared to one year ago, how would you rate your health in general now?
Would you say it is…
[READ RESPONSE CHOICES] (Circle one number)

Much better now than one year ago .....................................................................................1

Somewhat better now than one year ago .............................................................................2

About the same as one year ago ...........................................................................................3

Somewhat worse now than one year ago .............................................................................4

or Much worse now than one year ago ................................................................................5

Now I'm going to read a list of activities that you might do during a typical day.
As I read each item, please tell me if your health now limits you a lot, limits you a little,
or does not limit you at all in these activities.

3a. First, vigorous activities, such as running, lifting heavy objects, participating
in strenuous sports. Does your health now limit you a lot, limit you a little, or
not limit you at all? [READ RESPONSE CHOICES ONLY IF NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Appendices 345
Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3b. . . . moderate activities, such as moving a table, pushing a vacuum cleaner,


bowling, or playing golf. Does your health now limit you a lot, limit you a
little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3c. . . . lifting or carrying groceries. Does your health now limit you a lot, limit
you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3d. . . . climbing several flights of stairs. Does your health now limit you a lot,
limit you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY
IF NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

346 Appendices
3e. . . . climbing one flight of stairs. Does your health now limit you a lot, limit
you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot .................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3f. . . . bending, kneeling, or stooping. Does your health now limit you a lot, limit
you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]

(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3g. . . . walking more than a mile. Does your health now limit you a lot, limit you
a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]

(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3h. . . . walking several hundred yards. Does your health now limit you a lot,
limit you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY
IF NECESSARY]
[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that
because of your health?]
(Circle one number)

Appendices 347
Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3i. . . . walking one hundred yards. Does your health now limit you a lot, limit
you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

3j. . . . bathing or dressing yourself. Does your health now limit you a lot, limit
you a little, or not limit you at all? [READ RESPONSE CHOICES ONLY IF
NECESSARY]

[IF RESPONDENT SAYS S/HE DOES NOT DO ACTIVITY, PROBE: Is that


because of your health?]
(Circle one number)

Yes, limited a lot ..................................................................................................................1

Yes, limited a little ...............................................................................................................2

No, not limited at all ............................................................................................................3

The following four questions ask you about your physical health and your daily
activities.

4a. During the past four weeks, how much of the time have you had to cut down
on the amount of time you spent on work or other daily activities as a result
of your physical health?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

348 Appendices
or None of the time ..............................................................................................................5

4b. During the past four weeks, how much of the time have you accomplished
less than you would like as a result of your physical health?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

4c. During the past four weeks, how much of the time were you limited in the
kind of work or other regular daily activities you do as a result of your
physical health?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

4d. During the past four weeks, how much of the time have you had difficulty
performing work or other regular daily activities as a result of your physical
health, for example, it took extra effort?
[READ RESPONSE CHOICES] (Circle one number)
All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

The following three questions ask about your emotions and your daily activities.

Appendices 349
5a. During the past four weeks, how much of the time have you had to cut down
the amount of time you spent on work or regular daily activities as a result of
any emotional problems, such as feeling depressed or anxious?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

5b. During the past four weeks, how much of the time have you accomplished
less than you would like as a result of any emotional problems, such as feeling
depressed or anxious?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

5c. During the past four weeks, how much of the time did you do work or other
regular daily activities less carefully than usual as a result of any emotional
problems, such as feeling depressed or anxious?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

6. During the past four weeks, to what extent has your physical health or
emotional problems interfered with your normal social activities with family,
friends, neighbors, or groups? Has it interfered . . .
[READ RESPONSE CHOICES] (Circle one number)

350 Appendices
Not at all ...............................................................................................................................1

Slightly .................................................................................................................................2

Moderately ...........................................................................................................................3

Quite a bit .............................................................................................................................4

or Extremely ........................................................................................................................5

7. During the past four weeks, how much did pain interfere with your normal
work, including both work outside the home and housework? Did it interfere
...
[READ RESPONSE CHOICES] (Circle one number)

Not at all ...............................................................................................................................1

A little bit .............................................................................................................................2

Moderately ...........................................................................................................................3

Quite a bit .............................................................................................................................4

or Extremely ........................................................................................................................5

8. How much bodily pain have you had during the past four weeks? Have you
had . . .
[READ RESPONSE CHOICES] (Circle one number)

None .....................................................................................................................................1

Very mild .............................................................................................................................2

Mild ......................................................................................................................................3

Moderate ..............................................................................................................................4

Severe ...................................................................................................................................5

or Very severe ......................................................................................................................6

The next questions are about how you feel and how things have been with you during
the past four weeks.

As I read each statement, please give me the one answer that comes closest to the way
you have been feeling; is it all of the time, most of the time, some of the time, a little of
the time, or none of the time?

9a. How much of the time during the past four weeks . . . did you feel full of life?

Appendices 351
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9b. How much of the time during the past four weeks . . . have you been very
nervous?
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9c. How much of the time during the past four weeks . . . have you felt so down
in the dumps that nothing could cheer you up?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9d. How much of the time during the past four weeks . . . have you felt calm and
peaceful?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

352 Appendices
A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9e. How much of the time during the past four weeks . . . did you have a lot of
energy?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9f. How much of the time during the past four weeks . . . have you felt
downhearted and depressed?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9g. How much of the time during the past four weeks . . . did you feel worn out?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9h. How much of the time during the past four weeks . . . have you been happy?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Appendices 353
Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

9i. How much of the time during the past four weeks . . . did you feel tired?
[READ RESPONSE CHOICES ONLY IF NECESSARY] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

10. During the past four weeks, how much of the time has your physical health
or emotional problems interfered with your social activities like visiting with
friends or relatives? Has it interfered . . .
[READ RESPONSE CHOICES] (Circle one number)

All of the time ......................................................................................................................1

Most of the time ...................................................................................................................2

Some of the time ..................................................................................................................3

A little of the time ................................................................................................................4

or None of the time ..............................................................................................................5

These next questions are about your health and health-related matters.

Now, I'm going to read a list of statements. After each one, please tell me if it is
definitely true, mostly true, mostly false, or definitely false. If you don't know, just tell
me.

11a. I seem to get sick a little easier than other people. Would you say that's . . .
[READ RESPONSE CHOICES] (Circle one number)

Definitely true ......................................................................................................................1

Mostly true ...........................................................................................................................2

354 Appendices
Don't know ...........................................................................................................................3

Mostly false ..........................................................................................................................4

or Definitely false ................................................................................................................5

11b. I am as healthy as anybody I know. Would you say that's . . .


[READ RESPONSE CHOICES] (Circle one number)

Definitely true ......................................................................................................................1

Mostly true ...........................................................................................................................2

Don't know ...........................................................................................................................3

Mostly false ..........................................................................................................................4

or Definitely false ................................................................................................................5

11c. I expect my health to get worse. Would you say that's . . .


[READ RESPONSE CHOICES] (Circle one number)

Definitely true ......................................................................................................................1

Mostly true ...........................................................................................................................2

Don't know ...........................................................................................................................3

Mostly false ..........................................................................................................................4

or Definitely false ................................................................................................................5

11d. My health is excellent. Would you say that's . . .


[READ RESPONSE CHOICES] (Circle one number)

Definitely true ......................................................................................................................1

Mostly true ...........................................................................................................................2

Don't know ...........................................................................................................................3

Mostly false ..........................................................................................................................4

or Definitely false ................................................................................................................5

Thank you for completing this questionnaire.

Appendices 355
B. Vietnamese

Chất lượng cuộc sống liên quan tới sức khỏe Bắt đầu ☐
Tuần 16 ☐

Bảng câu hỏi này liên quan đến quan điểm của bạn về sức khỏe của chính mình.
Thông tin này sẽ giúp bạn theo dõi bạn cảm thấy ra sao và khả năng thực hiện các
sinh hoạt thông thường của bạn tốt như thế nào. Cảm ơn bạn đã tham gia cuộc
khảo sát này!
Đối với mỗi câu hỏi sau đây, xin vui lòng đánh dấu chéo vào một ô trả lời mô tả
chính xác nhất câu trả lời của bạn.

1. Nhìn chung, bạn cảm thấy sức khỏe của mình là:
Tuyệt vời Rất tốt Tốt Hơi kém Kém

1 2 3 4 5

2. Nhìn chung, so với thời điểm cách đây một năm, bạn đánh giá sức khỏe hiện
nay của mình như thế nào?
Bây giờ tốt Bây giờ tốt Gần giống Bây giờ kém Bây giờ kém
hơn nhiều so hơn một chút như thời điểm hơn một chút hơn nhiều so
với thời điểm so với thời cách đây một so với thời với thời điểm
cách đây một điểm cách năm điểm cách cách đây một
năm đây một năm đây một năm năm

1 2 3 4 5

3. Sau đây là những câu hỏi về các sinh hoạt mà có thể bạn sẽ thực hiện trong
một ngày bình thường. Sức khỏe hiện tại của bạn có làm hạn chế bạn trong
những sinh hoạt này không? Nếu có, mức độ hạn chế là như thế nào?

Có, hạn chế Có, hạn chế Không, chẳng


nhiều một ít hạn chế gì cả

a Các hoạt động dùng nhiều sức như chạy,


nâng vật nặng, tham gia các môn thể
thao mạnh .................................................................... 1 .................. 2 ................. 3
b Các hoạt động đòi hỏi sức lực vừa phải
như di chuyển một cái bàn, quét nhà,
bơi lội, hoặc chạy xe đạp ............................................. 1 .................. 2 ................. 3
c Nâng hoặc mang vác đồ thực phẩm linh tinh .............. 1 .................. 2 ................. 3
d Leo lên vài tầng lầu...................................................... 1 .................. 2 ................. 3
e Leo lên một tầng lầu .................................................... 1 .................. 2 ................. 3
f Uốn người, quỳ gối hoặc khom lưng
và gập gối ..................................................................... 1 .................. 2 ................. 3
g Đi bộ hơn một kílômét ................................................ 1 .................. 2 ................. 3

356 Appendices
h Đi bộ vài trăm mét ...................................................... 1 .................. 2 ................. 3
i Đi bộ một trăm mét ..................................................... 1 .................. 2 ................. 3
j Tắm rửa hoặc thay quần áo cho chính bạn .................. 1 .................. 2 ................. 3

4. Trong suốt 4 tuần vừa qua, do ảnh hưởng của sức khỏe thể chất, bạn có thường
gặp phải bất kỳ khó khăn nào sau đây trong công việc hoặc các sinh hoạt
thường ngày khác của bạn?
Luôn Rất thường Thỉnh Ít khi Không bao
luôn xuyên thoảng giờ

a Làm giảm thời lượng bạn tiến


hành công việc hoặc
sinh hoạt khác ................................. 1 ............. 2 ............. 3 ............. 4 ........... 5
b Hoàn thành công việc ít hơn
bạn muốn ......................................... 1 ............. 2 ............. 3 ............. 4 ........... 5

c Bị giới hạn trong một loại


công việc nào đó hoặc
sinh hoạt .......................................... 1 ............. 2 ............. 3 ............. 4 ........... 5
d Gặp khó khăn trong việc
thực hiện công việc hoặc
các sinh hoạt khác
(chẳng hạn như phải mất
nhiều công sức hơn) ........................ 1 ............. 2 ............. 3 ............. 4 ........... 5

5. Trong suốt 4 tuần vừa qua, do ảnh hưởng của yếu tố cảm xúc (chẳng hạn như
cảm thấy buồn phiền hoặc lo lắng), bạn có thường gặp phải bất kỳ khó khăn
nào sau đây trong công việc hoặc các sinh hoạt thường ngày khác của bạn?
Luôn Rất thường Thỉnh Ít khi Không bao
luôn xuyên thoảng giờ

a Làm giảm thời lượng bạn tiến


hành công việc hoặc
sinh hoạt khác ................................. 1 ............. 2 ............. 3 ............. 4 ........... 5
b Hoàn thành công việc ít hơn
bạn muốn ......................................... 1 ............. 2 ............. 3 ............. 4 ........... 5

c Làm việc hoặc tiến hành các


sinh hoạt khác kém
cẩn thận hơn bình thường ............... 1 ............. 2 ............. 3 ............. 4 ........... 5

6. Trong suốt 4 tuần vừa qua, sức khỏe thể chất hoặc các yếu tố cảm xúc có gây
trở ngại cho bạn trong các hoạt động xã hội thông thường mà bạn tham gia với
gia đình, bạn bè, hàng xóm hoặc các nhóm hội không, và ở mức độ nào?
Không hề Một chút Vừa phải Hơi nhiều Rất nhiều

1 2 3 4 5

Appendices 357
7. Trong suốt 4 tuần vừa qua, bạn cảm thấy cơ thể đau nhức ở mức độ nào?
Không Đau rất Đau nhẹ Đau vừa Đau trầm Đau rất
cảm thấy nhẹ phải trọng trầm trọng
đau

1 2 3 4 5 6

8. Trong suốt 4 tuần vừa qua, cảm giác đau đớn đã gây trở ngại cho công việc bình
thường của bạn ở mức độ nào (bao gồm cả công việc bên ngoài cũng như việc
nội trợ)?
Không hề Một chút Vừa phải Hơi nhiều Rất nhiều

1 2 3 4 5

9. Những câu hỏi này liên quan đến việc bạn cảm thấy ra sao và mọi việc như thế
nào với bạn trong suốt 4 tuần vừa qua. Đối với mỗi câu hỏi, xin vui lòng chọn
một câu trả lời đúng với cảm nhận của bạn nhất. Trong suốt 4 tuần vừa qua
bạn có thường cảm thấy...

Luôn Rất thường Thỉnh Ít khi Không bao


luôn xuyên thoảng giờ

a Bạn đã từng cảm thấy tràn đầy


sinh lực? .......................................... 1 ............. 2 ............. 3 ............. 4 ............. 5
b Bạn có cảm thấy rất lo lắng? ........... 1 ............. 2 ............. 3 ............. 4 ............. 5

c Bạn có cảm thấy quá đau


buồn và thất vọng đến độ
không có gì có thể làm bạn
vui lên được? ................................... 1 ............. 2 ............. 3 ............. 4 ............. 5
d Bạn có cảm thấy bình tĩnh và
thanh thản? ...................................... 1 ............. 2 ............. 3 ............. 4 ............. 5
e Bạn đã từng cảm thấy dồi dào
năng lượng?..................................... 1 ............. 2 ............. 3 ............. 4 ............. 5
f Bạn có cảm thấy buồn và
nản lòng? ......................................... 1 ............. 2 ............. 3 ............. 4 ............. 5
g Bạn đã từng cảm thấy kiệt sức? ...... 1 ............. 2 ............. 3 ............. 4 ............. 5

h Bạn có cảm thấy hạnh phúc? .......... 1 ............. 2 ............. 3 ............. 4 ............. 5

i Bạn đã từng cảm thấy mệt mỏi? ..... 1 ............. 2 ............. 3 ............. 4 ............. 5

358 Appendices
10. Trong suốt 4 tuần vừa qua, bạn có thường vì sức khỏe thể chất hoặc các yếu tố
cảm xúc của bạn cản trở đến các hoạt động xã hội mà bạn thực hiện (chẳng hạn
như đi thăm bạn bè, họ hàng, vv.)?
Luôn luôn Rất thường Thỉnh thoảng Ít khi Không bao
xuyên giờ

1 2 3 4 5

11. Mỗi nhận xét sau đây có mức độ ĐÚNG hay SAI như thế nào đối với bạn?
Hoàn toàn Hầu như Không biết Hầu như Hoàn toàn
đúng đúng sai sai

a Dường như tôi hơi dễ bị bệnh


hơn những người khác .................... 1 ............. 2 ............ 3.............. 4 ............. 5
b Tôi khỏe mạnh như bất kì
người nào mà tôi biết. ..................... 1 ............. 2 ............ 3.............. 4 ............. 5
c Tôi nghĩ rằng sức khỏe của
tôi sẽ trở nên tệ hơn ......................... 1 ............. 2 ............ 3.............. 4 ............. 5
d Sức khỏe của tôi tuyệt vời............... 1 ............. 2 ............ 3.............. 4 ............. 5

Cảm ơn Ông/Bà đã hoàn thành bộ câu hỏi này.

Appendices 359
Appendix 22. Phase 3 − Participant Demographic Information Questionnaire

A. English Baseline ☐

The following questions related to your personal information. Please tick (√) or fill in
blanks in the following questions:

1. Age: ………………………………….. years old (current age in Western calendar)

2. Gender: ☐ Male ☐ Female

3. Marital status:
☐ Married ☐ Single
☐ Separated ☐ Divorced ☐ Widowed

4. What is your highest education level?


☐ Primary school (level 1 to 5) ☐ Secondary school (level 6 to 9)
☐ High school (level 10 to 12) ☐ Two years certificate
☐ College (3 years) ☐ Bachelor (University)
☐ Others (please specify) ……………………………………………………

5. What is your occupation?


☐ Professional ☐ Farmer
☐ Industrial worker ☐ Salesperson
☐ Home worker ☐ Retired
☐ Other jobs (please specify)……………………………………….……

6. How much of your income and your family income per month?
a. Your income per month: ………………………..……….…………VND
b. Your family income per month: …………………..…….…………..VND

7. Do you have your health insurance? Yes ☐ No ☐


If yes, please indicate how much it covers for your treatment? ....................... (percent)

8. How many people are living with you at home? …………………… (in number)

9. How long you have been diagnosed with kidney problem? ……..… (in years)

10. Did you or your family members look at the meaning of the blood results or
medications on the internet [eg. google search] to get a better understanding about
your kidney problems?
Yes ☐ No ☐

360 Appendices
B. Vietnamese

Thông tin cá nhân Baseline ☐

Xin Ông/Bà vui lòng cho biết một số thông tin về bản thân. Ông/Bà có thể đánh dấu √
hoặc điền vào chỗ trống những thông tin cần thiết trong những câu hỏi sau đây:

1. Tuổi: ………………………………….. (tuổi hiện tại tính theo năm dương lịch)

2. Giới tính: ☐ Nam ☐ Nữ

3. Tình trạng hôn nhân:


☐ Lập gia đình ☐ Độc thân
☐ Ly thân ☐ Ly dị ☐ Góa bụa

4. Trình độ học vấn cao nhất của Ông/Bà là gì?


☐ Tiểu học (lớp 1-5) ☐ Trung học cơ sở (lớp 6-9)
☐ Trung học phổ thông (lớp 10-12) ☐ Trung cấp (2 năm)
☐ Cao đẳng (3 năm) ☐ Đại học (≥4 năm)
☐ Trình độ khác (vui lòng ghi rõ) ……………………………………

5. Nghề nghiệp hiện tại của Ông/Bà là gì?


☐ Cán bộ và nhân viên văn phòng ☐ Nông dân
☐ Công nhân ☐ Buôn bán
☐ Nội trợ ☐ Hưu trí
☐ Nghề khác (xin vui lòng ghi rõ)………………………………………

6. Thu nhập cá nhân/của gia đình Ông/Bà mỗi tháng là bao nhiêu?
a. Thu nhập cá nhân/tháng: ………………………………………Việt Nam Đồng
b. Thu nhập của gia đình/tháng: …………………………………..Việt Nam Đồng

7. Ông/Bà có bảo hiểm y tế không? Có ☐ Không ☐


Nếu có thì bảo hiểm y tế chi trả bao nhiêu phần trăm cho ông/bà?..…....% (phần trăm)

8. Có bao nhiêu người sống cùng với Ông/Bà? …………………………………….

9. Ông/Bà được chẩn đoán bệnh thận bao lâu? …………………… (tính theo năm)

10. Ông/Bà hoặc người thân của ông/bà có tìm kiếm thêm thông tin về kết quả xét
nghiệm máu hoặc thuốc được bác sĩ kê đơn trên mạng [ví dụ như tìm kiếm trên
google] để hiểu hơn về bệnh thận của ông/bà? Có ☐ Không ☐

Appendices 361
Appendix 23. Phase 3 – Renal Clinical Characteristics (Patients’ Medical Records)

A. English Baseline ☐
Week 16 ☐
1. What was the main cause of your kidney problem?
……………………………………
2. Your renal clinical results
1. eGFR: ……………………… 2. Creatinine: ………………
3. Urea: ……………………… 4. Albumin: …………………
5. Cholesterol: ………………… 6. HDL: ……………………
7. LDL: ………………………… 8. HbA1c: ……………………
9. Blood glucose level: …………………… 10. Blood pressure: ………………..
11. Calcium: ………………………… 12. Sodium: ……………………
13. Potassium: ……………………… 14. Phosphate: ……………………
15. Bicarbonate (HCO3): …………………… 16. Iron (Fe): ………………………
17. Haemoglobin (Hb): …………………….. 18. Urine protein: ………………………
19. Height: ……………………………... 20. Weight: …………………………
21. BMI: …………………………………

3. Current medications used


Patient’s Medical Records

362 Appendices
B. Vietnamese
Kết quả cận lâm sàng từ sổ khám của người bệnh
Bắt đầu ☐
Tuần 16 ☐
1. Nguyên nhân dẫn đến bệnh thận? ………………………………………….
2. Kết quả cận lâm sàng:
1. Chỉ số lọc cầu thận: ............... 2. Serum creatinine: ...............
3. Urê: ............... 4. Albumin: ...............
5. Cholesterol: ............... 6. HDL: ...............
7. LDL: ............... 8. HbA1C: ...............
9. Mức đường máu: ............... 10. Huyết áp: ...............
11. Canxi toàn phần: ............... 12. Na+: ...............
13. K+: ............... 14. Phospho: ...............
15. HCO3: ............... 16. Sắt (Fe): ...............
17. Huyết sắc tố (Hb): ............... 18. Protein niệu: ...............
19. Chiều cao: ............... 20. Cân nặng: ...............
21. BMI: ...............

3. Thuốc về bệnh Thận mà Ông/Bà đang dùng:


Hồ sơ người bệnh

Appendices 363
Appendix 24. Phase 3 − Patients’ Comorbidity

A. English Baseline ☐
Week 16 ☐
Comorbidities collected from patient with CKD (stages 3–5)
Comorbidity Comments/Notes

Comorbidities identified in Patient’s Medical Chart


Comorbidity Comments/Notes

364 Appendices
B. Vietnamese
Bệnh đi kèm Bắt đầu ☐
Tuần 16 ☐
Bệnh đi kèm thu thập từ người bệnh thận mãn tính (giai đoạn 3–5)
Bệnh đi kèm Ghi chú

Bệnh đi kèm được ghi chép trong hồ sơ người bệnh


Bệnh đi kèm Ghi chú

Appendices 365
Appendix 25. Phase 3 − Scoring of Patients’ Comorbidities

Charlson Comorbidity Index (Charlson et al., 1994; Charlson et al., 1987; You-qun et al.,
2014)
1. Indication: assess whether a patient will live long enough to benefit from a specific
screening measure or medical intervention
2. Scoring: Comorbidity Component (apply 1 point to each unless otherwise noted)
2.1. Myocardial infarction
2.2. Congestive Heart Failure
2.3. Peripheral Vascular Disease
2.4. Cerebrovascular Disease
2.5. Dementia
2.6. COPD
2.7. Connective Tissue Disease
2.8. Peptic Ulcer Disease
2.9. Diabetes Mellitus (1 point uncomplicated, 2 points if end-organ damage)
2.10. Moderate to Severe Chronic Kidney Disease (2 points)
2.11. Hemiplegia (2 points)
2.12. Leukaemia (2 points)
2.13. Malignant Lymphoma (2 points)
2.14. Solid Tumor (2 points, 6 points if metastatic)
2.15. Liver Disease (1 point mild, 3 points if moderate to severe)
2.16. AIDS (6 points)
3. Scoring: Age
3.1. Age <40 years: 0 points
3.2. Age 41‐50 years: 1 point
3.3. Age 51‐60 years: 2 points
3.4. Age 61‐70 years: 3 points
3.5. Age 71‐80 years: 4 points
Interpretation
1. Calculate Charlson Score or Index (i)
1. Add Comorbidity score to age score
2. Total denoted as 'i' below
2. Calculate Charlson Probability (10 year mortality)
1. Calculate Y = e^(i * 0.9)
2. Calculate Z = 0.983^Y
3. where Z is the 10 year survival

366 Appendices
Appendix 26. Phase 3 − Evaluation of the Intervention Program

A. English Intervention group ☐


Week 16 ☐
We would like to know how you feel about the kidney disease self-management program. For each of the following items, please tick (√) in the
columns which reflect your feeling about this program.
Items Strongly Agree Neutral Disagree Strongly
Agree Disagree
1. Did you find the self-management program (booklet, teaching, phone calls) helped
you to look after yourself better?
2. Was the CKD booklet easy to read and understand?
3. Are you more motivated to look after yourself?
4. Was the length of the education session appropriate?
5. Was the length of the telephone calls appropriate?

6. Would you recommend the kidney disease self-management program to other patients? Yes ☐ No ☐
7. Did you or anyone in your family look up on the internet to get information about your
kidney problems or its treatment (e.g., medications)? Yes ☐ No ☐
Doctor Yes ☐ No ☐
8. Who should provide the kidney disease self-management program? Nurse Yes ☐ No ☐

9. Do you have suggestions to improve the kidney disease self-management program?


…………………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………………………
Thank you for completing this evaluation.

Appendices 367
B. Vietnamese−Đánh giá về chương trình can thiệp Nhóm can thiệp ☐
Tuần 16 ☐

Chúng tôi muốn biết Ông/Bà cảm thấy như thế nào về chương trình hướng dẫn tự quản lý bệnh thận. Đối với mỗi câu hỏi dưới đây, xin Ông/Bà
vui lòng đánh dấu (√) vào cột mà phản ánh đúng nhất cảm giác của Ông/Bà về chương trình này.
Items Hoàn toàn Đồng ý Có thể Không Hoàn toàn
đồng ý đồng ý không đồng ý
1. Ông/Bà có thấy chương trình tự quản lý bệnh thận (cẩm nang hướng dẫn,
giảng dạy, gọi điện thoại) giúp Ông/Bà trong việc tự chăm sóc mình tốt hơn?
2. Ông/Bà có thấy quyển sách hướng dẫn quản lý bệnh thận là dễ đọc và dễ hiểu?
3. Ông/Bà có thêm động lực để tự chăm sóc bản thân?
4. Thời gian dành cho phần giảng dạy là phù hợp?
5. Thời gian dành cho phần gọi điện thoại là phù hợp?

6. Ông/Bà có muốn giới thiệu chương trình hướng dẫn tự quản lý bệnh thận này tới Có ☐ Không ☐
những người bệnh khác?

7. Ông/Bà hoặc người thân có tìm kiếm trên mạng để có them thông tin về bệnh thận
hoặc phương pháp điều trị (ví dụ: thuốc) Có ☐ Không ☐
8. Theo Ông/Bà ai là người nên cung cấp chương trình hướng dẫn tự quản lý bệnh thận Bác sĩ Đồng ý ☐ Không đồng ý ☐
này? Điều dưỡng Đồng ý ☐ Không đồng ý ☐
9. Ông/Bà có những góp ý gì không để góp phần nâng cao chương trình hướng dẫn tự quản lý bệnh thận này?
…………………………………………………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………………………………………………

Cảm ơn Ông/Bà đã hoàn thành đánh giá này.

368 Appendices
Appendix 27. Problematic words and phrases from Forward Translation of KiKS

Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements made
statement
Kidney Khảo sát kiến thức về bệnh thận Khảo sát kiến thức về thận (KiKS) Khảo sát kiến thức về bệnh thận (KiKS)
Knowledge (KiKS)
Survey
(KiKS)
Item 1 Nhìn chung, chỉ số huyết áp của bạn Tính trung bình, huyết áp của Ông/Bà “Tính trung bình [one average], huyết áp [blood
nên là: nên là: pressure], and Thấp hơn [Lower than]” were
□ 160/90 □ 160/90 accepted for close meaning to the original.
□ 150/100 □ 150/100
□ 170/80 □ 170/80
□ Thấp hơn 130/80 □ Dưới 130/80
Item 2 Có những loại thuốc nhất định mà Có một số thuốc mà bác sỹ của The phrases “nhất định, chỉ định [certain,
bác sĩ của bạn có thể kê đơn để giúp Ông/Bà có thể chỉ định để giúp giữ prescribe]” were accepted for close meaning
thận của bạn khoẻ mạnh có đúng cho thận của Ông/Bà càng khoẻ mạnh with the original.
không? càng tốt có phải không? The answer of the original is “yes or no”
□ Có □ Không có □ Đúng □ Không đúng translated into Vietnamese is (có/đúng or không
có/không đúng), therefore, the choice “đúng or
không đúng [correct or incorrect]” were used to
appropriate with the normal answer of yes/no
questions.
Item 3 Tại sao quá nhiều đạm (protein) Tại sao quá nhiều protein trong nước The word “đạm [protein]” was accepted as it is a
trong nước tiểu lại không tốt cho tiểu thì không tốt cho thận? plain word.
thận
Item 4 Chọn 1 THUỐC trong danh sách Chọn MỘT LOẠI THUỐC trong danh Phrase “Chọn MỘT THUỐC [choose one
dưới đây mà một người mắc bệnh sách dưới dây mà một người bị mắc medication]” was accepted because “Chọn MỘT
thận MÃN TÍNH nên tránh: bệnh thận MÃN TÍNH nên TRÁNH: LOẠI THUỐC [choose one type of medication]”
□ Lisinopril □ Lisinopril the original is select the one medication not one

Appendices 369
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements made
statement
□ Tylenol □ Tylenol type of medication.
□ Motrin / Ibuprofen □ Motrin / Ibuprofen
□ Vitamin E □ Vitamin E
□ Viên sắt □ Viên sắt
Item 5 Nếu thận bị suy, điều trị có thể bao Nếu thận bị suy, điều trị bệnh có thể The phrase “Chạy thận nhân tạo
gồm (ĐỐI VỚI CÂU HỎI NÀY bạn bao gồm (ĐỐI VỚI CÂU HỎI NÀY [haemodialysis]” were used instead of “Lọc máu
có thể CHỌN 1 CHO ĐẾN 2 CÂU Ông/Bà có thể chọn HAI ĐÁP ÁN): and Lọc thận nhân tạo [kidney dialysis]” for
TRẢ LỜI): □ Sinh thiết phổi more appropriate.
□ Sinh thiết phổi □ Lọc thận nhân tạo □ Sinh thiết phổi
□ Lọc máu □ Nội soi phế quản □ Chạy thận nhân tạo
□ Soi phế quản □ Nội soi đại tràng □ Nội soi phế quản
□ Soi đại tràng □ Ghép thận □ Nội soi đại tràng
□ Ghép thận □ Ghép thận
Item 6 “GFR” là viết tắt của từ gì? “GFR” có nghĩa là gì? The phrases “có nghĩa là gì [mean], mức độ
□ Tốc Độ Lọc Cầu Thận □ Glomerular Filtration Rate – cho [level], and dòng chảy [flow]” were accepted.
(Glomerular Filtration Rate) – cho chúng ta biết mức độ chức năng thận “GFR” có nghĩa là gì?
chúng ta biết cấp độ của chức năng □ Good Flow Renal – cho chúng ta □ Glomerular Filtration Rate – cho chúng ta biết
thận biết dòng chảy của nước tiểu từ thận mức độ chức năng thận
□ Lưu Lượng Tuới Máu Thận Tốt □ Gain For Renal – cho chúng ta viết □ Good Flow Renal – cho chúng ta biết dòng
(Good Flow Renal) – cho chúng ta nếu chức năng thận đang được cải chảy của nước tiểu từ thận
biết về lưu lượng của nước tiểu từ thiện □ Gain For Renal – cho chúng ta biết chức năng
thận □ Glucose Function Rate – cho chúng thận đang được cải thiện
□ Thận Cải Thiện (Gain For Renal) ta biết về mức độ đường huyết của □ Glucose Function Rate – cho chúng ta biết về
– cho chúng ta biết nếu chức năng Ông/Bà mức độ đường huyết
thận của bạn đang cải thiện
□ Glucose Function Rate – cho
chúng ta biết về mức đường huyết
của bạn
Item 7 Bệnh thận MÃN TÍNH có các giai Bệnh thận MÃN TÍNH có các giai “Đúng không” was used to appropriate with the

370 Appendices
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements made
statement
đoạn không? đoạn khác nhau có phải không? answer scale. The answer “đúng or không đúng”
was used for yes/no questions of the
questionnaire.
Item 8 Bệnh thận MÃN TÍNH có làm tăng Bệnh thận MÃN TÍNH làm tăng nguy “nguy cơ đau tim cho người bệnh đúng không”
khả năng gặp cơn đau tim (nhồi máu cơ đau tim cho người bệnh có phải was used to appropriate with the answer scale
cơ tim) của một người không? không? and close to normal speaking language in
Vietnam.
Item 9 Bệnh thận MÃN TÍNH có làm tăng Bệnh thận MÃN TÍNH làm tăng nguy “làm tăng nguy cơ tử vong cho con người đúng
khả năng tử vong của một người do cơ tử vong cho một người vì bất cứ không” was used for easy understanding.
bất kỳ lý do nào không? nguyên nhân gì có phải không?
Phần này sẽ hỏi về THẬN LÀM Phần này sẽ hỏi về THẬN LÀM Phần này sẽ hỏi về THẬN LÀM NHỮNG GÌ.
NHỮNG GÌ. Xin Ông/Bà vui lòng NHỮNG GÌ. Xin Ông/Bà vui lòng Xin Ông/Bà vui lòng chọn một câu trả lời
chọn một câu trả lời bằng cách chọn một câu trả lời bằng cách đánh bằng cách đánh dấu √ vào ô trống cho mỗi
đánh dấu √ vào ô trống cho mỗi dấu √ vào ô trống cho mỗi câu hỏi câu hỏi sau đây.
câu hỏi sau đây. sau đây.
Item 10 Thận tạo nước tiểu phải không? Thận tạo ra nước tiểu? Thận tạo ra nước tiểu đúng không?
Item 11 Thận làm sạch máu phải không? Thận làm sạch máu? Thận làm sạch máu đúng không?
Item 12 Thận giữ cho xương khoẻ mạnh Thận giữ cho xương khoẻ mạnh? Thận giữ cho xương khoẻ mạnh đúng không?
đúng không?
Item 13 Thận giữ cho ta không bị rụng tóc Thận giữ cho không bị rụng tóc? Thận giữ cho không bị rụng tóc đúng không?
đúng không?
Item 14 Thận giúp giữ cho số lượng hồng Thận giữ cho số lượng hồng cầu bình Thận giúp giữ cho số lượng hồng cầu bình
cầu bình thường đúng không? thường? thường đúng không?
Item 15 Thận giúp giữ cho huyết áp bình Thận giữ cho huyết áp bình thường? Thận giúp giữ cho huyết áp bình thường đúng
thường đúng không? không?
item 16 Thận giúp giữ cho đường máu bình Thận giúp cho việc giữ đường huyết “Đường huyết [blood glucose]” was accepted for
thường đúng không? bình thường? easy understanding.
Item 17 Thận giúp giữ cho mức Kali trong Thận giúp cho việc giữ nồng độ Kali “Giữ nồng độ Kali [potassium level]” was used

Appendices 371
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements made
statement
máu bình thường đúng không? trong máu bình thường? for easy understanding.
Item 18 Thận giúp giữ cho mức phốt pho Thận giúp cho việc giữ nồng độ phốt- “Giữ nồng độ phốt-pho [phosphorus level]” was
trong máu bình thường đúng không? pho trong máu bình thường? used for easy understanding.

Phần này hỏi về TRIỆU CHỨNG. Phần này hỏi về TRIỆU CHỨNG. Phần này hỏi về TRIỆU CHỨNG. Ông/Bà vui
Ông/Bà vui lòng chọn từ danh Ông/Bà vui lòng chọn từ danh sách lòng chọn từ danh sách dưới đây những triệu
sách dưới đây những triệu chứng dưới đây những triệu chứng mà một chứng mà một người mắc bệnh thận mãn tính
mà một người mắc bệnh thận mãn người mắc bệnh thận mãn tính hoặc hoặc suy thận có thể có bằng cách đánh dấu √
tính hoặc suy thận có thể có bằng suy thận có thể có bằng cách đánh vào ô trống cho mỗi câu hỏi?
cách đánh dấu √ vào ô trống cho dấu √ vào ô trống cho mỗi câu hỏi?
mỗi câu hỏi?
Item 19 Tăng mệt mỏi? Mệt mỏi tăng? “Mệt mỏi tăng” was used as normal spoken
language in Vietnam.
Item 20 Khó thở (thở hụt hơi)? Thở nông? “Thở nông [shortness of breath]” was accepted
to close meaning with the original.
Item 21 Có vị kim loại/vị khó chịu trong Miệng có vị kim loại/có vị khó chịu “Miệng có vị kim loại/có vị khó chịu trong
miệng? trong miệng? miệng?” was used.
Item 22 Ngứa bất thường? Ngứa bất thường? Ngứa bất thường?
Item 23 Buồn nôn và/hoặc nôn? Buồn nôn và/hoặc nôn mửa? Buồn nôn và/hoặc nôn mửa?
Item 24 Rụng tóc? Rụng tóc? Rụng tóc?
Item 25 Khó ngủ tăng? Khó ngủ tăng lên? Khó ngủ tăng lên?
Item 26 Sụt cân? Giảm cân? “Giảm cân [weight loss])?” was used instead of
“Sụt cân” for more appropriate.
Item 27 Lẫn lộn? Nhầm lẫn? “Nhầm lẫn (Giảm trí nhớ) [confusion]” was used
for easy understanding.
Item 28 Không có bất kỳ triệu chứng nào? Không có triệu chứng nào cả? “Không có bất kỳ triệu chứng nào cả” was used
as normal spoken language in Vietnam.
Note: Problematic words and phrases were highlighted in yellow colour.

372 Appendices
Appendix 28. Problematic words and phrases from Forward Translation of CKD-SM

Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements


statement made
CKD-SM
Chronic kidney TỰ QUẢN LÝ BỆNH THẬN TỰ CHĂM SÓC BỆNH THẬN MÃN “TỰ QUẢN LÝ [self-management]” was
disese self- MÃN TÍNH TÍNH used as a plain phrase.
management
CHRONIC TỰ QUẢN LÝ BỆNH THẬN TỰ CHĂM SÓC BỆNH THẬN MÃN TỰ QUẢN LÝ BỆNH THẬN MÃN
KIDNEY MÃN TÍNH TÍNH TÍNH (CKD - SM)
DISEASE SELF- Dưới đây là 32 câu hỏi liên quan đến cảm
MANAGEMENT Dưới đây là một số những câu hỏi Dưới đây là một số những câu hỏi liên giác và cách làm của Ông/Bà trong việc
liên quan đến việc bạn cảm thấy quan đến việc Ông/Bà cảm thấy như chống đỡ lại bệnh thận mãn tính. Ông/Bà
There are a như thế nào và bạn làm thế nào để thế nào và làm như thế nào để chống vui lòng đánh dấu √ vào một trong bốn lựa
number of giải quyết với bệnh thận mãn tính, đỡ bệnh thận mãn tính, xin Ông/Bà chọn (1: Không bao giờ; 2: Thỉnh thoảng;
questions in xin hãy chọn 1 trong 4 đáp án trên hãy chọn một trong bốn đáp án mà 3: Thường xuyên; 4: Luôn luôn) mà phản
relation to how mà phản ánh tốt nhất tình trạng phản ánh tốt nhất tình trạng thực tại ánh tốt nhất tình trạng thực tại của Ông/Bà
you feel and deal thực tế của bạn trong 3 tháng gần của Ông/Bà trong ba tháng vừa qua. trong ba tháng vừa qua.
with chronic đây. 1: Không bao giờ;
kidney disease, 1: Không bao giờ; 2: Thỉnh thoảng;
please select one 2: Thỉnh thoảng 3: Thường xuyên;
of four response 3: Thường xuyên; 4: Luôn luôn
that best reflects 4: Luôn luôn
your real
situation in the

Appendices 373
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
last three months.
1: Never; 2:
Sometimes; 3:
Often; 4: Always
Item 1 Khi tôi có câu hỏi về bệnh thận của Khi tôi có thắc mắc về tình trạng bệnh “Thắc mắc [questions]” was accepted for
tôi, tôi thảo luận những điều sẽ làm thận của tôi, tôi thảo luận những gì cần normal spoken way.
với gia đình và bạn bè làm với gia đình và bạn bè của tôi.
Item 2 Tôi sẽ hỏi về những nguyên nhân Tôi sẽ hỏi về các nguyên nhân có thể The phrase “các nguyên nhân có thể gây ra
có thể dẫn đến việc suy giảm chức gây ra việc suy giảm chức năng thận [the reasons which might cause]” was
năng thận của tôi. của tôi accepted as normal spoken way.
Item 3 Tôi thông báo với gia đình và bạn Tôi thông báo với gia đình và bạn bè Tôi thông báo với gia đình và bạn bè của
bè tôi về kế hoạch điều trị thận của của tôi về kế hoạch điều trị bệnh thận tôi về kế hoạch điều trị bệnh thận của tôi
tôi (ví dụ như sự thay đổi thuốc, của tôi (ví dụ như thay đổi thuốc sử (ví dụ như thay đổi thuốc sử dụng, thay
thay đổi lối sống). dụng, thay đổi lối sống). đổi lối sống).
Item 4 Tôi chia sẻ kinh nghiệm cá nhân tôi Tôi chia sẻ kinh nghiệm/sự từng trải Tôi chia sẻ kinh nghiệm của cá nhân mình
về bệnh thận với những người khác của cá nhân tôi về bệnh thận với về bệnh thận với những người cũng mắc
mắc bệnh thận. những người cũng mắc bệnh thận. bệnh thận.
Item 5 Tôi hiểu ý nghĩa của những xét Tôi hiểu ý nghĩa của các xét nghiệm This item was modified as “Tôi hiểu ý
nghiệm máu về chức năng thận của máu dùng để đánh giá chức năng thận nghĩa các chỉ số đánh giá chức năng thận
tôi (ví dụ như creatinine, eGFR). của tôi (ví dụ như creatinine, eGFR). của các xét nghiệm máu của tôi (ví dụ như
creatinine, eGFR) [I understand results of
laboratory tests which were used to
evaluate my kidney’s function]” for easy

374 Appendices
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
understanding.
Item 6 Khi huyết áp của tôi tăng cao (hơn Khi huyết áp của tôi cao (lớn hơn This item was modified as “Khi huyết áp
140/90), tôi cố gắng tìm ra lý do có 140/90), tôi cố gắng tìm ra các nguyên của tôi tăng cao (lớn hơn 140/ 90), tôi cố
thể. nhân có thể dẫn đến việc này. gắng tìm ra các nguyên375nhân có thể dẫn
đến việc này [when my blood pressure
increased (more than 140/90), I try to find
out any possible cause for this]” for easy
understanding.
Item 7 Để phòng tránh sự gia tăng hoạt Để phòng tránh sự làm việc quá tải “Để tránh gây hại cho thận, tôi nên kiểm
động đối với thận của mình, tôi có cho thận, tôi có khả năng kiểm soát soát chế độ ăn [to prevent an overwork for
thể kiểm soát những gì mà tôi ăn. những gì tôi ăn. my kidney, I am able to control what I
eat]” was used as normal spoken language.
Item 8 Tôi tuân theo những chế độ ăn Tôi thực hiện theo chế độ ăn kiêng This item was modified as “Tôi thực hiện
được khuyến cáo bởi bác sĩ hoặc được khuyến nghị bởi bác sĩ hoặc điều chế độ ăn kiêng theo lời khuyên của bác sĩ
điều dưỡng hoặc nhà dinh dưỡng dưỡng hoăc chuyên gia dinh dưỡng hoặc điều dưỡng.” [I follow the diet which
của tôi. của tôi. was recommended by my doctors or
nurses].
Item 9 Tôi giải quyết các vấn để liên quan Tôi giải quyết các vấn đề liên quan “Nguồn thông tin khác nhau [different
đến bệnh thận của tôi bằng cách sử đến bệnh thận của tôi bằng cách sử sources]” was accepted.
dụng các nguồn lực đa dạng (ví dụ dụng các nguồn thông tin khác nhau
gọi cho điều dưỡng hoặc bác sĩ của (ví dụ như gọi cho bác sĩ hoặc điều
tôi, sử dụng internet, Google, nhóm dưỡng của tôi, sử dụng internet,
hỗ trợ bệnh thận). Google, nhóm hỗ trợ người mắc bệnh

Appendices 375
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
thận).
Item 10 Khi tôi cảm thấy bối rối hoặc nản Khi tôi cảm thấy khó chịu hoặc thất “Khó chịu hoặc thất vọng [feeling upset or
lòng, tôi thảo luận cảm giác của tôi vọng, tôi thảo luận với người khác về frustrated]” and “cảm xúc [emotion]” were
với những người khác cảm xúc của tôi. accepted.
Item 11 Tôi kết hợp chặt chẽ việc điều trị Tôi kết hợp việc điều trị bệnh thận của The item was modified as “Tôi kết hợp
bệnh thận của tôi vào cuộc sống tôi vào trong cuộc sống thường nhật chặt chẽ việc điều trị bệnh thận với mọi
của tôi. của tôi. sinh hoạt hằng ngày của mình [I integrate
closely my treatment of kidney disease
into my daily life]” for easy
understanding.
Item 12 Tôi tránh những thói quen mà làm Tôi từ bỏ những thói quen mà làm xấu Tôi từ bỏ những thói quen làm xấu đi chức
tồi đi chức năng thận của tôi (ví dụ đi chức năng thận của tôi (ví dụ như năng thận của tôi (ví dụ như hút thuốc lá,
như hút thuốc, tiêu thụ đồ uống có hút thuốc, uống các loại đồ uống có uống các loại đồ uống có cồn, ăn mặn).
cồn, thức ăn nhiều muối) cồn, ăn mặn).
Item 13 Tôi tuân theo những khuyến cáo Tôi thực hiện theo những khuyến nghị This item was modified as “Tôi tập thể dục
của các chuyên gia sức khoẻ về của các chuyên gia y tế về việc tập thể hàng ngày theo lời khuyên của bác sĩ và
việc luyện tập. dục. điều dưỡng [I follow doctors and nurses’
recommendations of doing exercise]”.
Item 14 Tôi theo dõi những triệu chứng của Tôi theo dõi sát các triệu chứng và các Tôi theo dõi sát các triệu chứng và những
mình và những dấu hiệu cảnh báo dấu hiệu cảnh báo sớm của tôi (ví dụ dấu hiệu cảnh báo sớm về bệnh thận mãn
sớm (mức đường huyết, cân nặng, như đường máu, cân nặng, thở nông, tính và suy thận của tôi (ví dụ như mức
khó thở, phù chân). phù chân) đường huyết, cân nặng, thở nông, phù
chân).

376 Appendices
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
Item 15 Tôi tuân theo những khuyến cáo Tôi thực hiện theo các khuyến nghị Tôi thực hiện theo lời khuyên của bác sĩ và
của các chuyên gia sức khoẻ về một của các chuyên gia y tế về một chế độ điều dưỡng về một chế độ ăn uống hợp lý.
chế độ ăn cân bằng. ăn uống cân bằng.
Item 16 Tôi hỏi bác sĩ hoặc điều dưỡng Tôi hỏi bác sĩ hoặc điều dưỡng để hiểu Tôi hỏi bác sĩ hoặc điều dưỡng để hiểu rõ
những câu hỏi để làm rõ kế hoạch rõ kế hoạch điều trị bệnh thận của tôi. kế hoạch điều trị bệnh thận của tôi.
điều tri thận của tôi.
Item 17 Tôi tuân theo những khuyến cáo Tôi thực hiện theo những khuyến nghị Tôi thực hiện theo lời khuyên của bác sĩ và
của các chuyên gia sức khoẻ về của các chuyên gia y tế về việc không điều dưỡng về việc không hút thuốc lá.
việc không hút thuốc. hút thuốc.
Item 18 Tôi thay đổi lối sống của tôi để Tôi đã thay đổi nếp sống của mình để This item was modified as “Tôi đã thay
tránh làm bệnh thận của tôi bị tồi phòng ngừa bệnh thận của tôi trở nên đổi lối sống của mình để bệnh thận không
đi. nặng hơn. trở nên nặng hơn [I have changed my
lifestyle to prevent my kidney disease
from getting worse]”.
Item 19 Tôi tìm kiếm sự giúp đỡ từ người Tôi tìm kiếm sự giúp đỡ từ người khác “Khó chịu hoặc thất vọng [upset or
khác khi tôi cảm thấy bối rối hoặc khi tôi cảm thấy khó chịu hoặc thất frustrated]” was accepted.
nản lòng. vọng.
Item 20 Tôi giữ cho thận của tôi khoẻ mạnh Tôi giữ cho thận của tôi khoẻ mạnh “Giữ gìn sức khoẻ chung [keeping my
bằng cách duy trì sức khoẻ chung bằng cách giữ gìn sức khoẻ tổng thể general health condition]” was accepted.
của tôi. của tôi.
Item 21 Tôi dừng những thói quen xấu mà Tôi dừng những thói quen mà gây hại Tôi dừng những thói quen gây hại cho
có hại đối với thận của tôi (như hút cho thận của tôi (ví dụ như hút thuốc, thận của mình (ví dụ như hút thuốc lá, sử
thuốc, sử dụng thức ăn nhiều muối ăn mặn, uống rượu). dụng thức ăn nhiều muối, uống rượu bia).

Appendices 377
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
và đồ uống có cồn).
Item 22 Tôi áp dụng các biện pháp để hiểu Tôi thực hiện các bước để hiểu về các “Thực hiện các bước [take steps]” was
được những yếu tố nguy cơ liên yếu tố nguy cơ liên quan đến bệnh accepted because “áp dụng các biện pháp
quan đến bệnh thận mạn tính (ví dụ thận mãn tính (ví dụ như tăng huyết [using several methods]” means use
cao huyết áp, đái tháo đường, hút áp, đái tháo đường, hút thuốc, béo difference methods and do not have close
thuốc, béo phì). phì). meaning with the original.
Item 23 Tôi kiểm soát cân nặng của tôi theo Tôi kiểm soát cân nặng của mình dựa Tôi kiểm soát cân nặng của mình theo
những lời khuyên từ bác sĩ hay điều theo lời khuyên của bác sĩ và điều những lời khuyên từ bác sĩ và điều dưỡng.
dưỡng. dưỡng.
Item 24 Tôi đưa ra những lựa chọn tốt về Tôi đưa ra những lựa chọn tốt về số Tôi đưa ra những lựa chọn hợp lý về số
loại và lượng thức ăn tôi ăn khi tôi lượng và loại thức ăn mà tôi ăn khi tôi lượng và loại thức ăn của mình khi tôi
không ở nhà (ví dụ như ở cửa hàng, không ăn ở nhà (ví dụ như tại các cửa không ăn ở nhà (ví dụ như tại các nhà
nhà thờ, tiệc, ăn ở ngoài). hàng, nhà thờ, tiệc tùng, ra ngoài ăn). hàng, nhà thờ, tiệc tùng, ra ngoài ăn).
Item 25 Tôi có thể điều chỉnh thói quen Tôi có thể điều chỉnh thói quen hàng Tôi có thể điều chỉnh thói quen hàng ngày
hàng ngày của tôi để tuân theo kế ngày của tôi theo kế hoach điều trị theo kế hoach điều trị bệnh thận của mình
hoạch điều trị thận khi tôi không ở bệnh thận của tôi khi tôi không ở nhà khi không ở nhà (ví dụ như đi du lịch, đi
nhà (ví dụ như, du lịch, kỳ nghỉ). (ví dụ như đi du lịch, đi nghỉ dưỡng). nghỉ dưỡng).
Item 26 Khi cơ thể tôi có những triệu chứng Khi cơ thể của tôi có các dấu hiệu thể “Triệu chứng thực thể [physical
thực thể mới hoặc tồi đi (ví dụ như: chất mới hoặc xấu đi (ví dụ như là phù symptoms]” was accepted.
dịch ở chân (sưng), đau đầu trầm nề chân [sưng], nhức đầu nặng, đi tiểu
trọng, đi tiểu nhiều vào ban đêm), nhiều vào ban đêm), tôi cố gắng tìm ra
tôi cố gắng tìm ra nguyên nhân. nguyên nhân của nó.
Item 27 Tôi vẫn uống tất cả thuốc của tôi kể Tôi vẫn uống thuốc đầy đủ khi tôi “Thuốc đầy đủ [take all medication]” was

378 Appendices
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
cả khi tôi không ở nhà. không ở nhà. accepted.
Item 28 Tôi cảm thấy có thể đến các sự kiện Tôi cảm thấy tôi có khả năng tham gia “Có thể tham gia [able to attend]” was
xã hội (ví dụ như đám cưới, tiệc, đi các sự kiện xã hội (ví dụ như đám used instead of “có thể đến [able to go]
nhà thờ) mặc dù tôi mắc bệnh thận. cưới, tiệc tùng, đi lễ nhà thờ), mặc dù and có khả năng tham gia [could
tôi mắc bệnh thận. participate]”
Item 29 Tôi tìm kiếm những thông tin về Tôi tìm kiếm các thông tin về bệnh Tôi tìm kiếm các thông tin về bệnh thận
bệnh thận mạn tính từ nhiều nguồn thận mãn tính từ các nguồn khác nhau mãn tính từ các nguồn khác nhau (ví dụ
(ví dụ như internet, tờ rơi, sách (ví dụ như là internet, tờ phơi, sách, như là internet, tờ phơi, sách hướng dẫn bỏ
hướng dẫn bỏ túi, sách, nhóm hỗ nhóm hỗ trợ người mắc bệnh thận. túi, nhóm hỗ trợ người mắc bệnh thận.
trợ bệnh thận).
Item 30 Tôi uống thuốc của tôi đúng theo Tôi dùng thuốc theo chỉ định của bác This item was modified as “Tôi uống
đơn được kê bởi bác sĩ hoặc điều sĩ hoặc điều dưỡng hoặc dược sĩ. thuốc theo chỉ định của bác sĩ [I take my
dưỡng hoặc dược sĩ của tôi. medications as prescribed by my
doctors]”. The phrases “hoặc điều dưỡng
hoặc dược sĩ [nurses or pharmacists]” had
been deleted because only physicians can
prescribe medications for patients who
admitted in hospital in Vietnam.
Item 31 Tôi hành động khi những dấu hiệu Tôi có hành động khi các dấu hiệu Tôi có thực hiện hành động khi các dấu
cảnh báo sớm và những triệu chứng cảnh báo sớm và các triệu chứng của hiệu cảnh báo sớm và các triệu chứng của
của tôi trở nên tồi tệ. tôi trở nên tồi tệ hơn. mình trở nên tồi tệ hơn.
Item 32 Khi tôi có câu hỏi về bệnh thận của Khi tôi có thắc mắc bề bệnh thận của Khi tôi có thắc mắc bề bệnh thận của
tôi, tôi thảo luận những điều sẽ làm tôi, tôi thảo luận những gì cần làm với mình, tôi thảo luận những gì cần làm với

Appendices 379
Original Forward translator 1 Forward translator 2 Reviewer’s comments and agreements
statement made
với bác sĩ, điều dưỡng hoặc dược sĩ bác sĩ hoặc điều dưỡng hoặc dược sĩ. bác sĩ hoặc điều dưỡng.
của tôi.
Note: Problematic words and phrases were highlighted in yellow colour.

380 Appendices
Appendix 29. Comparison of English and Back-Translated of Vietnamese KiKS

No Original version Translator 1 Translator 2 Finalise the English


version according to the
final Vietnamese version
Kidney Knowledge Survey Knowledge survey about kidney Investigating knowledge of Kidney Disease
(KiKS) disease kidney diseases (KiKS) Knowledge Survey
(KiKS)
1 On average, your blood In average, your blood pressure On average, your blood pressure On average, your blood
pressure should be: should be: should be: pressure should be:
□ 160/90 □ 160/90 □ 160/90 □ 160/90
□ 150/100 □ 150/100 □ 150/100 □ 150/100
□ 170/80 □ 170/80 □ 170/80 □ 170/80
□ Lower than 130/80 □ Less than 130/80 □ Below 130/80 □ Lower than 130/80
2 Are there certain There are certain medicines There are some medications which There are some
medications your doctor can which your doctor prescribes for your doctors can prescribe to keep medications which your
prescribe to help keep your you to keep your kidney healthy, your kidneys as good as possible? doctors can prescribe to
kidney(s) as healthy as isn’t it? □ Correct □ Not keep your kidneys as
possible? □ Correct □ Not correct correct good as possible?
□ Yes □ No □ Correct
□ Incorrect
3 Why is too much protein in Why is it not good for kidney Why it is not good for kidneys Why it is not good for
the urine not good for the when there is too much protein in when there is so much protein in kidneys when there is too
kidney? urine? urine? much protein in urine?
□ It can scar the kidney □ It can cause scar in kidney □ It may cause scar in kidneys □ It may cause scar the
□ It is a sign of kidney □ It is a sign of kidney injury □ It is the sign of kidney damage kidney
damage □ It is a sign of kidney injury □ It is the sign of kidney damage □ It is a sign of kidney
□ It is a sign of kidney AND it can cause scar in kidney AND it may cause scar in kidneys damage
damage AND can scar the □ It can cause urine infection □ It may cause urine infection □ It is a sign of kidney

Appendices 381
kidney □ All of above options □ All the above answers damage AND it may
□ It can cause an infection in cause scar the kidney
the urine □ It may cause urine
□ All of the above infection
□ All the above answers
4 Select the ONE Choose ONE KIND OF Choose ONE MEDICATION in Choose ONE
MEDICATION from the list MEDICINE in following list that the below list which people with MEDICATION from the
below that a person with CHRONIC kidney disease CHRONIC kidney diseases should list below that people
CHRONIC kidney disease patients should AVOID: AVOID: with CHRONIC kidney
should AVOID: □ Lisinopril □ Lisinopril diseases should AVOID:
□ Lisinopril □ Tylenol □ Tylenol □ Lisinopril
□ Tylenol □ Motrin / Ibuprofen □ Motrin / Ibuprofen □ Tylenol
□ Motrin / Ibuprofen □ Vitamin E □ Vitamin E □ Motrin / Ibuprofen
□ Vitamin E □ Iron tablet □ Fe supplement tablets □ Vitamin E
□ Iron Pills □ Fe supplement tablets
5 If the kidney(s) fail, When there is kidney failure, If kidneys are failure, treatment If the kidney(s) fail,
treatment might include treatment can include (FOR THIS may include (ACCORDING TO treatment might include
(FOR THIS QUESTION QUESTION, you can choose THIS QUESTION you can choose (FOR THIS QUESTION
you can PICK up to TWO TWO ANSWERS): TWO ANSWERS): you can CHOOSE up to
ANSWERS): □ Lung biopsy □ Lung biopsy TWO ANSWERS):
□ Lung biopsy □ Kidney dialysis □ Haemodialysis □ Lung biopsy
□ Haemodialysis □ Bronchoscopy □ Bronchoscopy □ Haemodialysis
□ Bronchoscopy □ Colonoscopy □ Colonoscopy □ Bronchoscopy
□ Colonoscopy □ Kidney implant □ Kidney replacement □ Colonoscopy
□ Kidney transplant □ Kidney transplant
6 What does “GFR” stand for? What does “GFR” mean? What does “GFR” mean? What does “GFR” mean?
□ Glomerular Filtration Rate □ Glomerular Filtration Rate – □ Glomerular Filtration Rate – □ Glomerular Filtration
– tells us level of kidney give us information about kidney indicates level of kidney function Rate – gives us
function function □ Good Flow Renal – indicates the information about kidney
□ Good Flow Renal – tell us □ Good Flow Renal – give us flow of urine from kidneys function
about flow of urine from information about urine flow □ Gain For Renal – indicates the □ Good Flow Renal –

382 Appendices
kidney from the kidney improvement of kidney function gives us information
□ Gain For Renal – tells us □ Gain For Renal – give us □ Glucose Function Rate – about urine flow from the
if your kidney function is information if kidney function is indicates your level of blood kidney
improving improved glucose □ Gain For Renal – gives
□ Glucose Function Rate – □ Glucose Function Rate – give us information if kidney
tells us about your blood us information about your blood function is improved
sugar level glucose □ Glucose Function Rate
– gives us information
about your blood glucose
level
7 Are there stages of Does CHRONIC kidney disease Do CHRONIC kidney diseases Does CHRONIC kidney
CHRONIC kidney disease? have different stages? have different stages? disease have different
□ Yes □ No □ Correct □ Not □ Yes □ No stages?
correct □ Correct
□ Incorrect
8 Does CHRONIC kidney Does CHRONIC kidney disease Do CHRONIC kidney diseases Does CHRONIC kidney
disease increase a person’s increase risk for heart attack for increase risks of heart diseases? disease increase risks of
chances for a heart attack? patients? □ Yes □ No heart attack for people?
□ Yes □ No □ Correct □ Not correct □ Correct
□ Incorrect
9 Does CHRONIC kidney Does CHRONIC kidney disease Do CHRONIC kidney diseases Does CHRONIC kidney
disease increase a person’s increase risk for death because of increase risks of death for people disease increase risk for
chance for death from any any cause? caused by any reasons? death because of any
cause? □ Correct □ Not correct □ Yes □ No cause?
□ Yes □ No □ Correct
□ Incorrect
This section is about This part will ask about WHAT This part will ask for WHAT This part will ask about
WHAT THE KIDNEY KIDNEY DOES. Please choose KIDNEYS DO. Please choose one WHAT KIDNEY
DOES. Please select one one answer for each following answer for each below question. DOES. Please choose
answer to each question questions. one answer for each
below. following questions.

Appendices 383
10 Does the kidney make Kidney creates urine, doesn’t it? Do kidneys create urine? Does kidney create urine?
urine? □ Correct □ Not correct □ Yes □ No □ Correct
□ Yes □ No □ Incorrect
11 Does the kidney clean Kidney cleans blood, doesn’t it? Do kidneys clean blood? Does kidney clean blood?
blood? □ Correct □ Not correct □ Yes □ No □ Correct
□ Yes □ No □ Incorrect
12 Does the kidney keep bones Kidney keeps bone healthy, Do kidneys keep bone strong? Does kidney keep bone
healthy? doesn’t it? □ Correct □ Not □ Yes □ No strong?
□ Yes □ No correct □ Correct
□ Incorrect
13 Does the kidney keep a Kidney keeps hair not loss, Do kidneys keep hair from Does kidney keep hair
person from losing hair? doesn’t it? loosing? from loosing?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
14 Does the kidney help keep Kidney keeps number of Do kidneys keep the number of Does kidney keep the red
red blood cell counts erythrocyte in normal range, hemoglobins normal? blood cell normal?
normal? doesn’t it? □ Yes □ No □ Correct
□ Yes □ No □ Correct □ Not correct □ Incorrect
15 Does the kidney help keep Kidney keeps blood pressure Do kidneys keep blood pressure Does kidney keep blood
blood pressure normal? normal, doesn’t it? normal? pressure normal?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
16 Does the kidney help keep Kidney helps in keeping blood Do kidneys keep blood glucose Does kidney keep blood
blood sugar normal? glucose normal, doesn’t it? normal? glucose normal?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
17 Does the kidney help keep Kidney helps in keeping Do kidneys keep level of potassium Does kidney keep level of
potassium levels in the potassium in blood normal, in blood normal? potassium in blood
blood normal? doesn’t it? □ Yes □ No normal?
□ Yes □ No □ Correct □ Not correct □ Correct
□ Incorrect

384 Appendices
18 Does the kidney help keep Kidney helps in keeping Do kidneys keep level of Does kidney keep level of
phosphorus levels in the phosphorus in blood normal, phosphorus in blood normal? phosphorus in blood
blood normal? doesn’t it? □ Yes □ No normal?
□ Yes □ No □ Correct □ Not correct □ Correct
□ Incorrect
This section is about This part asks about This part asks about This section is about
SYMPTOMS. Please select SYMPTOMS. Please choose SYMPTOMS. Please select all SYMPTOMS. Please
from the list, all of the from the following list all symptoms which one people may select from the list, all of
symptoms a person might symptoms saying that a person have when they have chronic the symptoms a person
have if they have chronic may have chronic kidney kidney disease or kidney failure. might have if they have
kidney disease or kidney disease or kidney failure. chronic kidney disease
failure. or kidney failure.
19 Increased fatigue? Increase fatigue? Increasing fatigue? Increased fatigue?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
20 Shortness of breath? Shortness of breath? Narrow breathing? Shortness of breath?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
21 Metal taste / bad taste in the Discomfort taste? Metallic taste/ bad taste in mouth? Metallic taste/ bad taste in
mouth? □ Correct □ Not correct □ Yes □ No mouth?
□ Yes □ No □ Correct
□ Incorrect
22 Unusual itching? Abnormal itching? Abnormal ichy? Abnormal itching?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
23 Nausea and / or vomiting? Nausea and/ or vomit? Vomit and/or nausea? Nausea and/ or vomit?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
24 Hair loss? Hair loss? Hair loss? Hair loss?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect

Appendices 385
25 Increased trouble sleeping? Increase difficulty in sleeping? Increasing difficulty in sleeping? Increased difficulty in
□ Yes □ No □ Correct □ Not correct □ Yes □ No sleeping?
□ Correct
□ Incorrect
26 Weight loss? Weight loss? Weight loss? Weight loss?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
27 Confusion? Confuse? Confused? Confused?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
28 No symptoms at all? No symptoms? No symptoms at all? No symptoms at all?
□ Yes □ No □ Correct □ Not correct □ Yes □ No □ Correct
□ Incorrect
Note: Problematic words and phrases were highlighted in yellow colour.

386 Appendices
Appendix 30. Comparison of English and Back-Translated of Vietnamese CKD-SM

No Original version Back-translator 1 Back-translator 2 Finalise the English version


according to the final
Vietnamese version
Chronic Kidney Disease Self- CHRONIC KIDNEY DISEASE CHRONIC KIDNEY DISEASE CHRONIC KIDNEY
Management (CKD-SM) SELF- MANAGEMENT SELF-CARE DISEASE SELF-
MANAGEMENT
There are a number of The following questions are about These questions below are related The following questions are
questions in relation to how how you feel and do to deal with to how do you feel and how do about how you feel and deal
you feel and deal with chronic chronic kidney disease you do to face with your chronic with chronic kidney disease.
kidney disease, please select Please choose one in four options kidney diseases, please choose Please select one of four
one of four response that best which best describes your current one option of answering which responses that best reflects
reflects your real situation in state during the last three months best reflect your condition in the your real situation in the last
the last three months. 1: Never 2: Sometime past three months. three months.
1: Never 2: Sometimes 3: Usually 4: Always 1: Never 2: Sometimes 1: Never 2: Sometimes
3: Often 4: Always 3: Often 4: Always 3: Usually 4: Always
1 When I have questions about When I have any questions about When I have questions of my When I have questions of my
my kidney disease, I discuss my kidney disease, I discuss what kidney disease, I discussed what I kidney disease, I discuss what
what to do with my family and need to be done with my family and have to do with my family and I have to do with my family
friends friends friends and friends
2 I would ask about the possible I will ask about cause for any I will ask about the reasons which I will ask about the reasons
reasons for my decline in decrease in my kidney function might cause the decrease of my which might cause the
kidney function kidney function decrease of my kidney
function
3 I inform my family and friends I inform my family and friends I told my family and friends about I inform my family and
about my kidney treatment about my kidney disease treatment treating plan of my kidney disease friends about my kidney
plan (such as, medications plan (For example: change in (For example: change of treatment plan (such as,
changes, lifestyle changes). medication, change in lifestyle) medications, change of living medications changes, lifestyle
style) changes).

Appendices 387
4 I share my personal experience I share my personal experience I shared my personal experiences I share my personal
of kidney disease with other about kidney disease with other of kidney diseases with other experience about kidney
patients who have kidney kidney disease patients patients who also have thesedisease with other kidney
disease diseases disease patients
5 I understand the meaning of I understand laboratory test using to I understand results of laboratory
I understand results of
my kidney function blood tests assess my kidney function (for tests which were used to evaluate laboratory tests which were
(such as creatinine, eGFR.) example: Creatine, eGFR). my kidney’s function (For used to evaluate my kidney’s
example: creatine, eGFR) function (For example:
creatinine, eGFR)
6 When my blood pressure is When my blood pressure increases When my blood pressure increase When my blood pressure
high (more than 140/90), I try (more than 140/90), I try to find out (above 140/90), I tried to find increases (more than 140/90),
to find out the possible reasons. any possible cause for this. reasons which might cause this I try to find out any possible
cause for this.

7 To prevent the increased To prevent an overwork for my In order to avoid the overworking
To prevent the increased
workload on my kidneys, I am kidney, I am able to control what I of the kidneys, I have ability of
workload on my kidneys, I
able to control what I eat eat controlling what to eat am able to control what I eat
8 I follow the kidney diet I follow diet recommended by my I follow the diet which was I follow the diet which was
suggested by my doctor or doctors or nurses or my dietitian recommended by my doctors or recommended by my doctors
nurse or dietitian nurses or nutritional specialists
or nurses.
9 I solve problems related to my I solve problems related to my I solved problem related to my I solve problem related to my
kidney disease using various kidney disease by using different kidney disease by using different
kidney disease by using
sources (such as calling my information sources (for example sources of information (For different sources of
nurse or doctor, using the phone my doctor or nurse, internet, example: calling my doctors or information (For example:
internet, Google, kidney Google, peer group) nurses, using internet, Google,calling my doctors or nurses,
support group). group of supporting patients with
using internet, Google, group
kidney diseases) of supporting patients with
kidney diseases)
10 When I am feeling upset or When I feel uncomforted or upset, I When I feel uncomfortable or When I feel uncomfortable or
frustrated, I discuss my discuss with others about my disappointed, I discussed with disappointed, I discussed with
feelings with others. emotion. someone about my emotion someone about my emotion

388 Appendices
11 I incorporate my kidney I combine kidney disease treatment I integrated closely my treatment I integrate closely my
disease treatment into my life. with my daily life. of kidney disease into my daily treatment of kidney disease
life into my daily life
12 I avoid habits that worsen my I quit habits which worsen my I quit my bad habits which made I quit habits which worsen
kidney function (such as kidney function (for example my kidney’s function worsen (For my kidney function (for
smoking, consuming alcoholic smoking, drinking alcohol, salty example: smoking, drinking example smoking, drinking
drinks, overly salty food) diet) alcohol, eating salty food) alcohol, salty diet)
13 I follow health professionals’ I follow health experts’ I followed healthcare I follow doctors and nurses’
recommendations about recommendations about exercise professionals’ recommendations recommendations of doing
exercise. of doing exercises exercises
14 I keep track of my symptoms I monitor my early warning signs I monitored closely symptoms and I monitor my early warning
and early warning signs (blood and symptoms and (for example: early detective signs (For signs and symptoms (for
sugar levels, weight, shortness blood glucose, weight, shortness of example: glucose blood, weight, example: blood glucose,
of breath, swelling in feet) breath, leg edema) narrow breathing, foot swelling) weight, shortness of breath,
foot swelling)
15 I follow health professionals’ I follow health experts’ I followed healthcare I follow doctors and nurses’
recommendations about eating recommendations about balance professionals’ recommendations recommendations about
a balanced diet. diet. of balance eating eating a balanced diet.
16 I ask doctors or nurses I ask doctor or nurse to clarify my I asked doctors or nurses I asked doctors or nurses
questions to clarify my kidney kidney disease treatment plan. questions to understand clearly questions to understand
treatment plan. the plan of treating my kidney clearly the plan of treating my
disease kidney disease
17 I follow health professionals’ I follow health experts’ I followed healthcare I follow doctors and nurses’
recommendations about not recommendations about no professionals’ recommendations recommendations about not
smoking smoking of NOT smoking smoking
18 I have changed my lifestyle to I change my lifestyle to prevent my I changed my life style to prevent I have changed my lifestyle to
prevent my kidney disease kidney disease to become worse worsen my kidney disease prevent my kidney disease
from getting worse from getting worse
19 I seek help from others when I I find help from others when I feel I found help from other people I seek help from others when
am feeling upset or frustrated. discomforted or upset. when I was uncomfortable and I am feeling upset or
disappointed frustrated.

Appendices 389
20 I keep my kidneys healthy by I keep my kidney healthy by I kept my kidney healthy by I keep my kidney healthy by
maintaining my overall health. keeping my general health. keeping my general health keeping my general health
condition condition
21 I stop bad habits which are I stop my harmful for kidney habit I stopped bad habbits which might I stop bad habits which might
harmful to my kidneys (such as (for example: smoking, eating salty harm my kidneys (For example: harm my kidneys (For
smoking, consuming overly food, drinking alcohol) smoking, eating salty food, example: smoking, eating
salty food and alcohol). drinking) salty food, drinking)
22 I take steps to understand the I perform steps to understand risk I did steps of studying risk factors I take steps to understand the
risk factors associated with for kidney disease (for example: related to chronic kidney diseases risk factors associated with
chronic kidney disease (such as increase blood pressure, diabetes, (For example: hypertension, chronic kidney disease (such
high blood pressure, diabetes, smoking, obesity) diabetes, smoking, obesity) as high blood pressure,
smoking, obesity). diabetes, smoking, obesity).
23 I control my body weight I control my weight based on I controlled my weight based on I control my weight based on
according to the advice from advices of my doctors and nurses doctors or nurses’ advices doctors or nurses advice
doctors or nurses.
24 I make good choices about the I have good choice about amount I showed up good choice of I make good choices about
type and amount of food I eat and kind of food I eat when I am number and types of eating food the type and amount of food I
when I am not at home (such not eating at home (for example: in when I did not eat at home (For eat when I am not at home
as at the shops, church, parties, restaurant, church, party, eating example: restaurants, church, (for example: in restaurant,
eating out). out) parties, eating outside) church, party, eating out)
25 I can adjust my daily routine to I can adjust my daily activities I could adjust daily habits based I can adjust my daily
follow my kidney treatment based on my kidney disease on the treating plan of my kidney activities based on my kidney
plan when I am not at home treatment plan when I am not at disease when I was not at home disease treatment plan when I
(such as, traveling, holidays). home (for example: on travel, (For example: travelling, go to am not at home (for example:
retreat) resort) on travel, retreat)
26 When my body has new or When my body has new symptoms When my body had new or When my body has new or
worsening physical symptoms or become worse (leg edema, worsen symptoms (For example: worsen symptoms (For
(such as: fluid in my legs serious headache, urinate many foot swelling, severe headache, example: foot swelling,
[swelling], severe headaches, time at night), I try to find out the urinate frequently at night), I tried severe headache, urinate
passing extra urine at night), I causes. to find reasons frequently at night), I tried to
try to find out the cause. find reasons

390 Appendices
27 I still take all of my I still have my medicine even I had medications frequently even I still take all of my
medications even when I am though I am not at home when I was not at home medications even when I am
not at home not at home
28 I feel able to go to social I feel I am able to attend social I felt that I could participate social I feel I am able to attend
events (such as weddings, activities (wedding, party, church events (For example: wedding, social activities (wedding,
parties, church) even though I events), even though I have kidney parties, going to church), although party, church), even though I
have kidney disease. disease. I have kidney disease have kidney disease.
29 I seek out information about I search information about chronic I found information of chronic I search for information about
chronic kidney disease from a kidney disease from different kidney diseases form many chronic kidney disease from
range of sources (such as, sources (for example internet, different resources (For example: different sources (for example
internet, flyers, brochures, leaflet, manual, kidney disease internet, brochures, leaflets, group internet, leaflet, manual,
books, kidney support group). patient peer group) of supporting patients with kidney kidney disease patient peer
diseases) group)
30 I take my medications as I have medication as prescribed by I used medications based on I take my medications as
prescribed by my doctors or my doctor, nurse or pharmacist prescriptions of doctors or prescribed by my doctors.
nurses or pharmacist pharmacists
31 I take action when my early I have action when early warning I had actions when my early I take action when my early
warning signs and symptoms sign and symptom become worse detective signs and symptoms warning signs and symptoms
get worse worsen get worse
32 When I have questions about When I have any concern about my When I had questions of my When I have questions about
my kidney disease, I discuss kidney disease, I discuss what need kidney disease, I discussed about my kidney disease, I discuss
what to do with my doctors, to be done with my doctor, nurse or what to do with doctors, or nurses what to do with my doctors or
nurses or pharmacist. pharmacist. or pharmacists. nurses.
Note: Problematic words and phrases were highlighted in yellow colour.

Appendices 391
Appendix 31. Assessment Tool for Panel

KHẢO SÁT TỪ NHỮNG THÀNH VIÊN PHẢN BIỆN - Giai đoạn 1

Sử dụng những nhận định của Ông/Bà, đánh giá từng phần nội dung lớn và những nội dung nhỏ trong bảng dưới đây bằng cách cho điểm 1, 2, 3
hoặc 4 cho những nội dung dưới đây:
Xin Ông/Bà vui lòng đánh dấu √ vào chỗ thích hợp
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
Đánh giá 1 2 3 4 1 2 3 4 1 2 1 2 3 4
Khảo sát kiến thức về bệnh thận (KiKS)
Dưới đây là 28 câu hỏi liên quan
đến những hiểu biết của Ông/Bà
về bệnh thận mãn tính. Xin
Ông/Bà vui lòng đánh dấu √ vào

392 Appendices
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
câu trả lời mà Ông/Bà cho là
đúng.
1. Tính trung bình, huyết áp của
Ông/Bà nên là:
□ 160/90
□ 150/100
□ 170/80
□ Thấp hơn 130/80
2. Có một số loại thuốc nhất định
mà bác sĩ của Ông/Bà có thể chỉ
định để giúp giữ cho thận của
Ông/Bà càng khoẻ mạnh càng tốt
có phải không?
□ Đúng □ Không đúng
3. Tại sao quá nhiều đạm

Appendices 393
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
(protein) trong nước tiểu thì
không tốt cho thận?
□ Nó có thể gây sẹo ở thận
□ Nó là dấu hiệu của tổn thương
thận
□ Nó là dấu hiệu của tổn thương
thận VÀ có thể gây sẹo ở thận
□ Nó có thể gây nhiễm trùng
nước tiểu
□ Tất cả các ý kiến trên
4. Chọn MỘT THUỐC trong
danh sách dưới dây mà một người
mắc bệnh thận MÃN TÍNH nên
TRÁNH:
□ Lisinopril

394 Appendices
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
□ Tylenol
□ Motrin / Ibuprofen
□ Vitamin E
□ Viên sắt
5. Nếu thận bị suy, điều trị bệnh
có thể bao gồm (ĐỐI VỚI CÂU
HỎI NÀY Ông/Bà có thể chọn
HAI ĐÁP ÁN):
□ Sinh thiết phổi
□ Chạy thận nhân tạo
□ Nội soi phế quản
□ Nội soi đại tràng
□ Ghép thận
6. “GFR” có nghĩa là gì?
□ Tốc độ lọc cầu thận

Appendices 395
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
(Glomerular Filtration Rate) –
cho chúng ta biết mức độ chức
năng thận
□ Lưu lượng tưới máu thận tốt
(Good Flow Renal) – cho chúng
ta biết dòng chảy của nước tiểu từ
thận
□ Thận cải thiện (Gain For Renal)
– cho chúng ta biết nếu chức năng
thận đang được cải thiện
□ Glucose Function Rate – cho
chúng ta biết về mức độ đường
huyết
7. Bệnh thận MÃN TÍNH có các
giai đoạn khác nhau có phải

396 Appendices
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
không?
□ Đúng □ Không đúng
8. Bệnh thận MÃN TÍNH làm
tăng nguy cơ đau tim cho người
bệnh có phải không?
□ Đúng □ Không đúng
9. Bệnh thận MÃN TÍNH làm
tăng nguy cơ tử vong cho một
người vì bất cứ nguyên nhân gì có
phải không?
□ Đúng □ Không đúng
Phần này sẽ hỏi về THẬN LÀM NHỮNG GÌ. Xin Ông/Bà hãy chọn một câu trả lời cho mỗi câu hỏi sau đây (Câu 10 -18).
10. Thận tạo ra nước tiểu phải
không?
□ Đúng □ Không đúng

Appendices 397
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
11. Thận làm sạch máu phải
không?
□ Đúng □ Không đúng
12. Thận giữ cho xương khoẻ
mạnh đúng không?
□ Đúng □ Không đúng
13. Thận giữ cho không bị rụng
tóc đúng không?
□ Đúng □ Không đúng
14. Thận giữ cho số lượng hồng
cầu bình thường đúng không?
□ Đúng □ Không đúng
15. Thận giữ cho huyết áp bình
thường đúng không?
□ Đúng □ Không đúng

398 Appendices
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
16. Thận giúp cho việc giữ
đường huyết bình thường đúng
không?
□ Đúng □ Không đúng
17. Thận giúp cho việc giữ nồng
độ Kali trong máu bình thường
đúng không?
□ Đúng □ Không đúng
18. Thận giúp cho việc giữ nồng
độ phốt-pho trong máu bình
thường đúng không?
□ Đúng □ Không đúng
Phần này hỏi về TRIỆU CHỨNG. Xin Ông/Bà chọn từ danh sách dưới đây tất cả những triệu chứng mà một người có thể có nếu
người đó mắc bệnh thận mãn tính hoặc suy thận (Câu 19 - 28).
19. Mệt mỏi tăng?

Appendices 399
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
□ Đúng □ Không đúng
20. Thở nông?
□ Đúng □ Không đúng
21. Miệng có vị kim loại/có vị
khó chịu trong miệng?
□ Đúng □ Không đúng
22. Ngứa bất thường?
□ Đúng □ Không đúng
23. Buồn nôn và/hoặc nôn mửa?
□ Đúng □ Không đúng
24. Rụng tóc?
□ Đúng □ Không đúng
25. Khó ngủ tăng lên?
□ Đúng □ Không đúng
26. Giảm cân?

400 Appendices
Liên quan (Relevance) Rõ ràng (Clarity) Hoàn thiện Phù hợp và hợp lý về
1. Không có liên quan 1. Không rõ ràng (not (Comprehensivenes thang đánh giá cho từng
(not relevant) clear) s) câu (Appropriateness and
2. Khá phù hợp nhưng 2. Cần thay đổi lớn để 1. Nên bỏ đi (should Adequacy)
cần thay đổi lớn được rõ ràng (major be deleted) 1. Đánh giá không phù
(major change to be change to be clear) 2. Nên giữ lại hợp (not appropriate)
relevant) 3. Cần thay đổi nhỏ để (should be retained) 2. Cần thay đổi lớn để
3. Có liên quan và cần rõ ràng hơn (minor phù hợp với việc đánh giá
Nội dung
thay đổi nhỏ (minor change to be clear) (major change to be
change to be relevant) 4. Rất rõ ràng (very appropriate)
4. Rất có liên quan clear) 3. Cần thay đổi nhỏ để
(very relevant) phù hợp với việc đánh giá
(minor change to be
appropriate)
4. Đánh giá rất phù hợp
(very appropriate)
□ Đúng □ Không đúng
27. Nhầm lẫn?
□ Đúng □ Không đúng
28. Không có bất kỳ triệu chứng
nào cả?
□ Đúng □ Không đúng

Appendices 401
TỰ QUẢN LÝ BỆNH THẬN MÃN TÍNH (CKD-SM)
Dưới đây là 32 câu hỏi liên quan
đến việc Ông/Bà cảm thấy như
thế nào và làm như thế nào để
chống đỡ bệnh thận mãn tính, xin
Ông/Bà hãy chọn một trong bốn
đáp án mà phản ánh tốt nhất tình
trạng thực tại của Ông/Bà trong
ba tháng vừa qua. (Câu trả lời là:
Không bao giờ, Thỉnh thoảng,
Thường xuyên, Luôn luôn)
1. Khi tôi có thắc mắc về tình
trạng bệnh thận của tôi, tôi thảo
luận những gì cần làm với gia
đình và bạn bè của tôi.
2. Tôi sẽ hỏi về các nguyên nhân
có thể gây ra việc suy giảm chức
năng thận của tôi.
3. Tôi thông báo với gia đình và
bạn bè của tôi về kế hoạch điều trị
bệnh thận của tôi (ví dụ như thay
đổi thuốc sử dụng, thay đổi lối
sống).
4. Tôi chia sẻ kinh nghiệm của cá
nhân tôi về bệnh thận với những
người khác cũng mắc bệnh thận.
5. Tôi hiểu kết quả của các xét
nghiệm máu dùng để đánh giá
chức năng thận của tôi (ví dụ như
creatinine, eGFR).
6. Khi huyết áp của tôi tăng cao

402 Appendices
(lớn hơn 140/90), tôi cố gắng tìm
ra các nguyên nhân có thể dẫn
đến việc này.
7. Để phòng tránh sự làm việc
quá tải cho thận, tôi có khả năng
kiểm soát những gì tôi ăn.
8. Tôi thực hiện theo chế độ ăn
kiêng được khuyến nghị bởi các
bác sĩ hoặc điều dưỡng.
9. Tôi giải quyết các vấn đề liên
quan đến bệnh thận của tôi bằng
cách sử dụng các nguồn thông tin
khác nhau (ví dụ như gọi cho bác
sĩ hoặc điều dưỡng của tôi, sử
dụng internet, Google, nhóm hỗ
trợ người mắc bệnh thận).
10. Khi tôi cảm thấy khó chịu
hoặc thất vọng, tôi thảo luận với
người khác về cảm xúc của tôi.
11. Tôi kết hợp chặt chẽ việc điều
trị bệnh thận của tôi vào cuộc
sống thường nhật của tôi.
12. Tôi từ bỏ những thói quen mà
làm xấu đi chức năng thận của tôi
(ví dụ như hút thuốc, uống các
loại đồ uống có cồn, ăn mặn).
13. Tôi thực hiện theo những
khuyến nghị của các chuyên gia y
tế về việc tập thể dục.
14. Tôi theo dõi sát các triệu
chứng và những dấu hiệu cảnh

Appendices 403
báo sớm của tôi (ví dụ như đường
máu, cân nặng, thở nông, phù
chân).
15. Tôi thực hiện theo các khuyến
nghị của các chuyên gia y tế về
một chế độ ăn uống hợp lý.
16. Tôi hỏi bác sĩ hoặc điều
dưỡng những câu hỏi để hiểu rõ
kế hoạch điều trị bệnh thận của
tôi.
17. Tôi thực hiện theo những
khuyến nghị của các chuyên gia y
tế về việc không hút thuốc lá.
18. Tôi đã thay đổi lối sống của
mình để phòng ngừa bệnh thận
của tôi trở nên nặng hơn.
19. Tôi tìm kiếm sự giúp đỡ từ
người khác khi tôi cảm thấy khó
chịu hoặc thất vọng.
20. Tôi giữ cho thận của tôi khoẻ
mạnh bằng cách giữ gìn sức khoẻ
chung của tôi.
21. Tôi dừng những thói quen mà
gây hại cho thận của tôi (ví dụ
như hút thuốc lá, sử dụng thức ăn
nhiều muối, uống rượu bia).
22. Tôi thực hiện các bước để
hiểu về các yếu tố nguy cơ liên
quan đến bệnh thận mãn tính (ví
dụ như tăng huyết áp, đái tháo
đường, hút thuốc lá, béo phì).

404 Appendices
23. Tôi kiểm soát cân nặng của
mình dựa theo lời khuyên của bác
sĩ và điều dưỡng.
24. Tôi đưa ra những lựa chọn
hợp lý về số lượng và loại thức ăn
mà tôi ăn khi tôi không ăn ở nhà
(ví dụ như tại các nhà hàng, nhà
thờ, tiệc tùng, ăn ở ngoài).
25. Tôi có thể điều chỉnh thói
quen hàng ngày của tôi theo kế
hoạch điều trị bệnh thận của tôi
khi tôi không ở nhà (ví dụ như đi
du lịch, đi nghỉ dưỡng).
26. Khi cơ thể của tôi có những
triệu chứng thực thể mới hoặc xấu
đi (ví dụ như là phù nề chân, đau
đầu trầm trọng, đi tiểu nhiều vào
ban đêm), tôi cố gắng tìm ra
nguyên nhân của nó.
27. Tôi vẫn uống thuốc đầy đủ kể
cả khi tôi không ở nhà.
28. Tôi cảm thấy tôi có thể tham
gia các sự kiện xã hội (ví dụ như
đám cưới, tiệc tùng, đi nhà thờ),
mặc dù tôi mắc bệnh thận.
29. Tôi tìm kiếm các thông tin về
bệnh thận mãn tính từ nhiều
nguồn khác nhau (ví dụ như là
internet, tờ rơi, sách hướng dẫn
bỏ túi, nhóm hỗ trợ người mắc
bệnh thận).

Appendices 405
30. Tôi uống thuốc theo chỉ định
của bác sĩ hoặc điều dưỡng hoặc
dược sĩ.
31. Tôi có hành động khi các dấu
hiệu cảnh báo sớm và các triệu
chứng của tôi trở nên tồi tệ hơn.
32. Khi tôi có thắc mắc về bệnh
thận của tôi, tôi thảo luận những
gì cần làm với bác sĩ hoặc điều
dưỡng hoặc dược sĩ.

Cảm ơn Ông/Bà đã hoàn thành đánh giá này.

406 Appendices
Appendix 32. Revision made for items that the Suggested by Panellists

Original version Draft Vietnamese version Panellists’ suggestions Final revision by supervisor team
Kidney Disease Knowledge Survey
Item 1: Tính trung bình, huyết áp của The phrase word “nên duy trì ở mức” This suggestion was accepted and
On average, your blood Ông/Bà nên là: (should be maintained) instead of the question was finalised as “tính
pressure should be: “nên là”. trung bình, huyết áp của Ông/Bà
nên duy trì ở mức”.
Item 2: Có một số loại thuốc nhất định mà Panellists suggested this item should This suggestion was accepted and
Are there certain medications bác sĩ có thể chỉ định dùng để tốt be revised as “Are there certain the question was finalised as “Có
your doctor can prescribe to cho thận của Ông/Bà đúng không? medications your doctor can một số loại thuốc nhất định mà bác
help keep your kidney(s) as prescribe which is useful for your sỹ có thể chỉ định dùng để tốt cho
healthy as possible? kidneys?” thận của Ông/Bà đúng không?”
Item 4: Chọn MỘT THUỐC trong danh Two panels suggested adding the This suggestion was rejected
Select the ONE sách dưới đây mà một người mắc effects of these medications and because it has not happen in the
MEDICATION from the list bệnh thận MÃN TÍNH nên tránh: images of these medications so original version.
below that a person with □ Lisinopril patients can easily recognise.
CHRONIC kidney disease □ Tylenol
should AVOID: □ Motrin / Ibuprofen
□ Lisinopril □ Vitamin E
□ Tylenol □ Viên sắt
□ Motrin / Ibuprofen
□ Vitamin E
□ Iron Pills
Item 5: Nếu thận bị suy, điều trị có thể Two panels requested to add one This suggestion also was rejected
If the kidney(s) fail, treatment bao gồm (ĐỐI VỚI CÂU HỎI more choice such as peritoneal because it has not happen in the
might include (FOR THIS NÀY bạn có thể CHỌN 1 CHO dialysis. original version.
QUESTION you can PICK ĐẾN 2 CÂU TRẢ LỜI):
up to TWO ANSWERS):
Item 6: “GFR” có nghĩa là gì? One panel member commented that This item was kept as the original

Appendices 407
Original version Draft Vietnamese version Panellists’ suggestions Final revision by supervisor team
What does “GFR” stand for? this question was too professional. version. This item is to test
One panel suggested this item should knowledge of kidney disease.
be deleted.
Item 8: Bệnh thận MÃN TÍNH làm tăng Two panels suggested changing the The word “heart attack” was kept to
Does CHRONIC kidney nguy cơ đau tim cho người bệnh word “heart attack” to “heart be similar with the original version.
disease increase a person’s đúng không? disease” or “cardiovascular
chances for a heart attack? diseases”.
Item 9: Bệnh thận MÃN TÍNH làm tăng Panellists suggested to use the phrase This suggestion was accepted for
Does CHRONIC kidney nguy cơ tử vong cho con người “increase risks of mortality for easily understanding.
disease increase a person’s đúng không? people”
chance for death from any
cause?
Item 13: Thận giữ cho không bị rụng tóc One panel suggested this item should This suggestion was not accepted as
Does the kidney keep a đúng không? be deleted because it is not the this item was kept as the original.
person from losing hair? kidney function. This item is to test knowledge of
kidney disease.
Item 14: Thận giúp giữ cho số lượng hồng One panel suggested to use the word This suggestion was not accepted
Does the kidney help keep cầu bình thường đúng không? “thận tạo máu” (kidney produce because the kidneys to NOT
red blood cell counts normal? blood) instead of “thận giúp giữ cho produce blood cells. The phrase
số lượng hồng cầu bình thường” “thận giúp giữ cho số lượng hồng
(kidneys help keep red blood cell cầu bình thường” was kept.
count normal).
Item 16: Thận giúp cho việc giữ đường One panel suggested this item should This suggestion was not accepted as
Does the kidney help keep huyết bình thường đúng không? be deleted because it is not the this item was kept as the original.
blood sugar normal? kidney function. This item is to test knowledge of
kidney disease.
Item 18: Thận giúp cho việc giữ nồng độ One panel suggested this item should This suggestion was not accepted as
Does the kidney help keep phốt-pho trong máu bình thường be deleted because it is not the this item was kept as the original.
phosphorus levels in the đúng không? kidney function. This item is to test knowledge of
blood normal? kidney disease.

408 Appendices
Original version Draft Vietnamese version Panellists’ suggestions Final revision by supervisor team
Item 21: Miệng có vị kim loại/có vị khó One panel suggested this item should This suggestion was not accepted as
Metal taste / bad taste in the chịu trong miệng? be deleted because it is not the this item was kept as the original.
mouth? kidney function. This item is to test knowledge of
kidney disease.
Item 24: Rụng tóc One panel suggested this item should This suggestion was not accepted as
Hair loss? be deleted because it is not the this item was kept as the original.
kidney function. This item is to test knowledge of
kidney disease.
Item 26: Giảm cân? Panellists suggested using the phrase This suggestion was accepted for
Weight loss? “Gầy sút cân (Giảm cân) [weight easily understanding.
loss/reduce weight]”.
Item 27: Nhầm lẫn One panel suggested this item should This suggestion was not accepted as
Confusion? be deleted because it is not the this item was kept as the original.
kidney function. This item is to test knowledge of
kidney disease.
Other items included 3, 7, 10, Panellists agreed with these items. No change was made.
11, 12, 15, 17, 19, 20, 22, 23,
25, 28.
Chronic Kidney Disease Self-Management
Item 21: Tôi dừng những thói quen gây hại Panellists suggested this item was This suggestion was acknowledged
I stop bad habits which are cho thận của mình (ví dụ: hút similar to item 12. but the item 12 and 21 still be kept.
harmful to my kidneys (such thuốc lá, sử dụng thức ăn nhiều
as smoking, consuming muối, uống rượu bia).
overly salty food and
alcohol).
Item 24: Tôi đưa ra những lựa chọn hợp lý Panellists agreed with this item; This suggestion was accepted and
I make good choices about về số lượng và loại thức ăn của however, they suggested to delete the the word “church” was deleted.
the type and amount of food I mình khi tôi không ăn ở nhà (ví word “church” as not many people
eat when I am not at home dụ như tại các nhà hàng, nhà thờ, have religion.
(such as at the shops, church, tiệc tùng, ra ngoài ăn).

Appendices 409
Original version Draft Vietnamese version Panellists’ suggestions Final revision by supervisor team
parties, eating out).
Item 28: Tôi cảm thấy tôi có thể tham gia Panellists agreed with this item; This suggestion was accepted and
I feel able to go to social các sự kiện xã hội (ví dụ như đám however, they suggested to delete the the word “church” was deleted.
events (such as weddings, cưới, tiệc tùng, đi lễ nhà thờ), mặc word “church” as not many people
parties, church) even though I dù tôi mắc bệnh thận. have religion.
have kidney disease.
Item 29: Tôi tìm kiếm các thông tin về Panellists suggested this item was This suggestion was acknowledged
I seek out information about bệnh thận mãn tính từ nhiều similar to item 9. but the item 9 and 29 still be kept.
chronic kidney disease from a nguồn khác nhau (ví dụ như là
range of sources (such as, internet, tờ rơi, sách hướng dẫn bỏ
internet, flyers, brochures, túi, nhóm hỗ trợ người mắc bệnh
books, kidney support group). thận).
Other items included 1, 2, 3, Panellists agreed with these items as This suggestion was accepted. The
4, 5, 6, 7, 8, 10, 11, 13, 14, these items are related to the topic. term health care professional was
15, 16, 17, 18, 19, 20, 22, 23, However, the panellists suggested changed to doctors or nurses in
25, 26, 27, 30, 31, 32. using the term doctors or nurses some items.
instead of health care professional in
some items.

410 Appendices
Appendix 33. Histograms, Normal Q-Q plots, and Box plots of Variables

Appendices 411
412 Appendices
Appendices 413
414 Appendices
Appendices 415
416 Appendices
Appendices 417
418 Appendices
Appendices 419
420 Appendices
Appendix 34. Normality testing of Outcome Variables at each time point

Variables M Mdn SD Skewness Kurtosis


Total V.KiKS T0 18.01 18.0 3.06 -0.70 0.52
Total V.CKDSM T0 84.61 85.00 15.17 -0.31 -0.29
Total V.SECD T0 38.03 38.0 10.13 0.17 -0.45
Physical Functioning T0 72.11 75.0 19.83 -0.60 -0.67
Role Physical T0 54.91 50.0 26.67 0.55 -0.98
Bodily Pain T0 71.31 77.5 26.66 -0.44 -1.13
General Health T0 38.70 35.00 20.89 0.47 -0.53
Vitality T0 48.66 50.00 20.59 0.39 -0.27
Social Functioning T0 75.30 75.00 25.76 -0.58 -0.92
Role Emotional T0 64.44 58.33 23.55 0.30 -0.96
Mental Health T0 66.44 70.00 21.77 -0.29 -0.88
Systolic blood pressure T0 128.87 130.0 18.56 0.69 0.60
Diastolic blood pressure T0 81.52 80.0 11.0 0.24 -0.63
Total V.KiKS T1 21.07 21.0 3.79 -0.32 -0.59
Total V.CKDSM T1 90.76 92.00 16.02 -0.24 -0.46
Total V.SECD T1 39.83 41.0 9.70 -0.03 -0.47
Total V.KiKS T2 21.98 22.0 4.23 -0.44 -0.79
Total V.CKDSM T2 94.13 97.00 15.80 -0.48 -0.16
Total V.SECD T2 41.83 42.0 9.43 -0.02 -0.75
Physical Functioning T2 76.88 80.00 16.32 -0.94 0.83
Role Physical T2 63.66 56.25 24.03 0.24 -1.10
Bodily Pain T2 82.60 90.00 20.55 -1.02 0.36
General Health T2 37.83 37.00 20.80 0.46 -0.43
Vitality T2 52.44 50.00 15.32 -0.09 0.19
Social Functioning T2 84.33 93.75 19.77 -1.17 0.66
Role Emotional T2 71.40 75.00 26.38 -0.25 -1.39
Mental Health T2 71.04 70.00 15.08 -0.39 0.02
Systolic blood pressure T2 129.48 130.0 14.86 0.18 -0.27
Diastolic blood pressure T2 80.58 80.0 10.02 0.14 -0.42
Abbreviation: M, Mean; SD, Standard deviation; Mdn, Median; T0, Baseline; T1, Week 8; T2, Week 16;
V.KiKS, Vietnamese Kidney disease knowledge; V.CKD-SM, Vietnamese Chronic kidney disease self-
management; V.SECD, Vietnamese Self-efficacy for managing chronic disease; SD, Standard deviation

Appendices 421
Appendix 35. Participant Evaluation of Self-Management Program

No Items Percent (%)


Neutral Agree Strongly Agree
1 Did you find the self-management program 0 42.60 57.40
(booklet, teaching, phone calls) helped you
to look after yourself better?
2 Was the CKD booklet easy to read and 4.90 49.20 45.90
understand?
3 Are you more motivated to look after 16.40 41.00 42.60
yourself?
4 Was the length of the education session 1.60 55.70 42.60
appropriate?
5 Was the length of the telephone calls 1.60 55.70 42.60
appropriate?
Percent (%)
No Yes
6 Would you recommend the kidney disease 0 100
self-management program to other patients?
7 Did you or anyone in your family look up on 57.40 42.60
the internet to get information about your
kidney problems or its treatment (e.g.,
medications)?
8 Should doctors provide the kidney disease 0 100
self-management program?
9 Should nurses provide the kidney disease 0 100
self-management program?
10 Do you have suggestions to improve the 78.70 21.30
kidney disease self-management program?

422 Appendices

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