488812

2013
PMJ27710.1177/0269216313488812Palliative Medicine Malik et al.Malik et al.

PALLIATIVE
MEDICINE
Original Article

Palliative Medicine

Living with breathlessness: A survey of 27(7) 647­–656

© The Author(s) 2013
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DOI: 10.1177/0269216313488812

lung cancer or heart failure pmj.sagepub.com

Farida A Malik  The Department of Palliative Care, Policy & Rehabilitation, King’s College School of
Medicine, Cicely Saunders Institute, London, UK

Marjolein Gysels  The Department of Palliative Care, Policy & Rehabilitation, King’s College School of
Medicine, Cicely Saunders Institute, London, UK; Centre for Social Science and Global Health, University of Amsterdam,
The Netherlands

Irene J Higginson  The Department of Palliative Care, Policy & Rehabilitation, King’s College School of
Medicine, Cicely Saunders Institute, London, UK

Abstract
Background: Breathlessness is a common, distressing symptom in patients with advanced disease. With increasing focus on
home death for patients, carers are expected to support breathless people at home. Little is known about how carers experience
breathlessness and the differences in caring for someone with breathlessness and malignant or non-malignant disease.
Aim: To compare experiences of caring for a breathless patient with lung cancer versus those with heart failure and to examine
factors associated with caregiver burden and positive caring experiences.
Design: Cross-sectional survey of caregivers of breathless patients.
Setting/participants: Participants were recruited from two London hospitals. Inclusion criteria: caregivers of patients with
breathlessness and heart failure or lung cancer. Measures included self-completion of Short Form version of Zarit Burden Interview, a
‘positive caring experiences’ scale and Palliative Care Outcome Scale. We compared caregiver reports between heart failure and lung
cancer. Multiple regression analyses were used to examine factors related to burden and positive caring experiences.
Results: In total, 51 heart failure and 50 lung cancer caregivers were recruited. Most were spouses (72%) and women (80%). Severity
of patient breathlessness was similar in both groups. Caregiver concerns were mostly similar across conditions. Higher burden was
associated with poorer ‘quality of patient care’ and worse carer psychological health (R2 = 0.37, F = 12.2, p = 0.01). Caregiver depression
and looking after more breathless patients were associated with fewer positive caring experiences (R2 = 0.15, F = 4.4, p = 0.04).
Conclusions: Those who care for breathless patients report high levels of unmet needs and burden, equally severe for heart failure
and lung cancer caregivers. Caregivers of patients with more severe breathlessness report fewer positive caring experiences and
should be targeted by services with increased support in managing this symptom.

Keywords
Dyspnoea, heart disease, end-of-life care, hospice, home, palliative, cancer, family, caregiver burden, hospital, outcome

Background
Breathlessness is a common symptom in patients with
advanced disease, and it also reduces their caregiver’s qual-
ity of life.1 Although breathlessness occurs in up to 70% of
patients with cancer and between 60% and 90% of patients
with heart disease2 and has been found to be a cause of fear
and anxiety in carers,1,3 few studies focus on informal carer
perspectives.
Breathlessness has previously been found to be associ-
ated with low family well-being and the likelihood of a hos-
pital death in a study of over 300 patients with advanced
cancer.4 Patients with shortness of breath in another study
reported greater care needs in four areas, namely, ‘trans-
port, nursing care, homemaking and personal care’, com-
pared to those without shortness of breath.5 This may be

Corresponding author:
Farida A Malik, The Department of Palliative Care, Policy & Rehabilitation, King’s College School of Medicine, Cicely Saunders Institute, London SE5
9JP, UK.
Email: faridamalik@nhs.net
648 Palliative Medicine 27(7)
problematic for those trying to care for breathless patients
at home, as breathlessness has been found to be the most
common symptom in patients (with specialist palliative
care needs) who die in the emergency department.6 In the
United Kingdom, current Department of Health policy
emphasises a shift towards increasing home death,7 and
recent trends suggest that this is being realised.8 But this
may have a potential cost to caregivers who may be
expected to provide care to patients at the end of life, often
with little training or experience.
Studies examining breathlessness in advanced illness
have mainly focused on chronic obstructive pulmonary dis-
ease (COPD) and lung cancer (LC),9 with few studies on
heart failure (HF) patients and carers. Especially, little is
known about whether there are differences between caring
for a breathless patient with malignant or non-malignant
disease and what factors might influence a positive caring
experience or caregiver burden. Fewer patients with HF
and, by consequence, their caregivers receive palliative
care.10,11 Therefore, it is important to understand whether
there are differences in caregiver needs, in order to under-
stand whether there is a gap in palliative care provision,
which needs to be filled.
The aims of this study are as follows: (1) to compare
experiences of caring between HF and LC caregivers look-
ing after breathless patients and (2) to determine which fac-
tors are associated with caregiver burden and positive
rewards to caring in those looking after breathless patients.
Methods
Design
A cross-sectional, descriptive and comparative survey of
caregivers (and the patients they care for), following
Strengthening the Reporting of Observational Studies in
Epidemiology (STROBE) guidelines, was undertaken dur-
ing December 2007 to May 2009.
Subjects and recruitment
Participants were recruited from two large hospitals in
South London. Participants were recruited from outpatient
clinics and in-patient wards (for HF participants, these were
a weekly specialist HF clinic led by doctors and HF nurse
specialists, and cardiac and general wards; for LC partici-
pants these were the weekly lung oncology multi-discipli-
nary outpatient clinic and respiratory/general wards).
Health professionals identified participants (with their per-
mission) to the primary researcher. Inclusion criteria were
as follows: caregivers of patients with breathlessness that
affected ‘day-to-day life’and caregivers and patients over
the age of 18 years old. Caregivers were approached
through the patient. Recruitment took 18 months.
Consenting participants were invited to complete question-
naires in their preferred setting.
Data collection
Caregiver self-completed questions covering their experi-
ences of caring, symptoms and their needs. Measures used
included the modified Borg Breathlessness Scale,12 Zarit
Burden Interview Short Form 12 (ZBI-12),13 Hospital
Anxiety and Depression Scale,14 the Pittsburgh Sleep
Quality Inventory (PSQI),15 Short Form-36 (SF-36),16 the
Brief COPE instrument (a 28-item measure of coping
strategies that can be divided into three sub-scales: prob-
lem-focused, emotional-focused and dysfunctional-
focused coping strategies)17 and the Palliative Care
Outcome Scale–Symptom (POS-S) and Palliative Care
Outcome Scale–Core (POS-C) schedules.18,19 The POS-S
covers 10 different patient symptoms and has been used in
caregivers of patients with malignant and non-malignant
diseases.20 Two further items on ‘difficulty sleeping’ and
‘feeling sleepy’ derived from a POS-S-neurological Scale
are also included. The POS-C covers physical symptoms
and psychosocial, spiritual, organisational and practical
concerns and consists of two sub-scales, a POS ‘well-
being’ factor (including patient self-esteem, patient
depression and worry) and a POS ‘quality of care’ factor
(including time wasted on appointments, practical prob-
lems and information).18,19,21
Analysis
Levels of caregiver burden, sleep, mood and other con-
cerns, as well as caregiver reports of patient concerns and
needs, are compared between caregiver groups. Using pre-
vious data, which showed that the standard deviation for
ZBI-12 in cancer caregivers was 8.5,22 a sample size calcu-
lation was carried out, which showed that 45 participants
was needed in each caregiver group, to show a difference in
the total ZBI-12 score with 80% power at a 5% significance
level. Hochberg’s23 procedure was used to correct for mul-
tiple significance testing. Stepwise multiple regression
analyses were used to examine which patient and caregiver
factors were related to (1) caregiver burden and (2) positive
caring experiences. Sensitivity analysis checked the results
for consistency using standard multiple regression. The
study had ethics approval (REC number 07/Q0703/71) and
National Health Service (NHS) research and development
approval.
Results
Sample characteristics
Caregivers were recruited via the patient, and 195 patients
(and caregivers) were identified who fulfilled inclusion cri-
teria. There were 94 refusals. Reasons included were those
related to the patient (patient refused, no reason = 45;
patient moved out of area = 3; patient too upset/distressed
to participate = 3 and patient died/too unwell = 12) and
Malik et al. 649

195 patients with

caregivers
approached
potentially
fulfilling criteria Refusals = 94
Patient reasons = 63 (45 refused/no
reason, 3 moved out of area, 3 too
upset/distressed to participate, 12
patients died/became too unwell)
Caregiver (CG) reasons = 15 (9 pts did
not want CG involved, 6 CG stated did
not want to be involved)
101 patients Unable to establish follow-up

completed and 8 contact = 16

patients did not

complete but
agreed to their
caregiver
completing:
(4 refused, 4 were
Two LC patients elected two
too unwell)
caregivers to fill in questionnaire.
10 caregiver questionnaires NOT
completed (3 CG refused, 6 CG
reason not known, 1 patient
subsequently reported no main
caregiver)
101 caregivers
completed
questionnaires:
-93 with patient
questionnaire
-8 without patient
questionnaire

Figure 1.  Flow diagram of study recruitment.

those related to the caregiver (patient not wanting caregiver
involved = 9 and caregiver refusing to participate = 6).
Additionally, the study was unable to establish follow-up
contact with 16 other participants, despite repeated attempts
at contact.
In total, 101 caregivers (50 LC and 51 HF caregivers)
completed questionnaires (Figure 1). Most LC and HF
patients and caregivers were recruited from outpatient
clinics (90%). Characteristics of HF and LC caregivers
were mostly similar. Most were women (82% of HF and
74% of LC caregivers) and spouses (Table 1). Caregivers
of HF patients were more likely to be looking after the
patient alone, without family assistance, 60% in HF (95%
confidence interval (CI) = 47%–73%) compared to 36% in
650 Palliative Medicine 27(7)

Table 1.  Caregiver and patient characteristics included in the study.

Caregiver characteristics

Variable HF caregivers LC caregivers

Gender (female) 42 (82%) (95% CI = 71–93) 37 (74%) (95% CI = 62–86)
Age (years), mean (SD) 65.8 (12.7) (95% CI = 62.1–69.4) 59.9 (12.8) (95% CI = 56.0–63.8)
Person they care for
 Wife/husband 36 (70%) 32 (64%)
 Partner 2 (4%) 3 (6%)
 Son/daughter 1 (2%) 0 (0%)
 Brother/sister 0 (0%) 1 (2%)
 Parent 8 (16%) 12 (24%)
 Friend 1 (2%) 0 (0%)
  Other relative 3 (6%) 2 (4%)
Living with patient (yes) 42 (82%) (95% CI = 71.3–92.7) 40 (80%) (95% CI = 68.9–91.1)
Others help (yes)* 20 (40%) (95% CI = 26–53) 31 (64%) (95% CI = 51–77)
Carer in employment: yes 22 (41%) (95% CI = 27.4–54.6) 17 (35%) (95% CI = 21.8–48.2)
Carer ethnic status
 White 41 (80%) 46 (92%)
 Black/other 9 (18%) 4 (8%)
 Missing 1 (2%)  
Patient characteristics
Variable HF patients LC patients
Gender (male) 38 (75%) (95% CI = 63.0–87.0) 34 (71%) (95% CI = 58.4–83.6)
Age (years), mean (SD) 72.3 (9.6) (95% CI = 69.5–75.0) 68.9 (8.6) (95% CI = 65.7–70.9)
Patient diagnosis and cause IHD = 32 (64%) Small cell = 5 (10%)
Hypertension = 7 (14%) Non-small cell = 37 (77%)
Viral = 1 (2%) Unspecified
Alcohol = 1 (2%) Histology = 6 (12.5%)
Unknown = 9 (18%)
Chemo = 1 (2%)
Stage of illness NYHA II = 9 (18%) Locoregional = 20 (42%)
NYHA III = 38 (74%)
NYHA IV = 4 (8%) Metastases = 25 (52%)
EF mean (SD) = 27% (10.1) Not known =3 (6%)
EF median = 25%
Patient PPS (mean/SD) 75.6% (10.1%) (95% CI = 72.7–78.5) 71.1% (12.1%) (95% CI = 67.3–74.3)
Median = 70 (60–100) Median = 70 (30–100)
Time since diagnosis** Mean = 1671 (1284); 95% CI = 1248–2093 days Mean = 380 (401); 95% CI = 264–497 days
Median = 1495 (range = 40–5813)** Median = 234 (range = 33–2263)

HF: heart failure; LC: lung cancer; SD: standard deviation; CI: confidence interval; IHD: ischaemic heart disease; NYHA II, III, IV: New York Heart
Association Functional Classifications; EF: ejection fraction; PPS: Palliative Performance Scale.
Result significance (after Hochberg’s procedure): *χ2 = 5.59, p = 0.02; **Z = −5.6, p < 0.0005.

LC (95% CI = 23–49%) (Table 1). Most patients were
men. Most HF patients’ disease was caused by ischaemic
heart disease (IHD) (64%). Most patients were in New
York Heart Association (NYHA) Functional Classification
III (74%).
Most LC patients had a diagnosis of non-small-cell lung
carcinoma (77%). Over half of all the patients had evidence
of metastatic disease (56%). HF patients had been living
with their diagnosis for a much longer time compared to LC
patients (Table 1).
Caregiver reports of patient symptoms and
concerns
Caregiver ratings for patient breathlessness prevalence and
severity were similar in both HF and LC groups (Table 2).
The prevalence of other reported patient symptoms was
also similar in both caregiver groups (Table 2): the most
prevalent patient symptoms were ‘weakness’/‘lack of
energy’ and ‘shortness of breath’, which were reported in at
least 90% of cases in both carer groups. LC caregivers rated
Malik et al. 651

Table 2.  Caregiver reports of patient concerns, patient needs and ADL.

Caregiver variable HF caregivers LC caregivers

Mean (SD); (95% CI); Mean (SD); (95% CI); median
  median (10th/90th centiles); number (n) (10th/90th centiles); number (n)
Patient breathlessness over 2.9 (1.9); (2.5–3.3); 3.0 (2.0); (2.5–3.6);
last 24 h (mean Borg) median = 3 (10th = 1/90th = 6.8); median = 3 (10th = 0.05/90th = 5);
n = 50 n = 50
Patient breathlessness over 1.9 (0.9); (1.7–2.1); 2.0 (0.9); (1.8–2.3);
last 3 days (mean POS) median = 2 (10th = 0.2/90th = 3); median = 2 (10th = 0.1/90th = 3);
n = 51 n = 50
Patient symptoms (mean POS-S score)
 Pain 1.5 (1.2); (1.2–1.8); 1.6 (1.2); (1.3–1.9);
median = 2 (10th = 0/90th = 3); median = 2 (10th = 0/90th = 3);
n = 49 n = 50
 Weakness 1.9 (0.8); (1.7–2.1); 2.2 (1.0); (1.9–2.5);
median = 2 (10th = 1/90th = 3); median = 2 (10th = 1/90th = 4);
n = 50 n = 49
  Feeling sick 0.3 (0.7); (0.1–0.5); 0.6 (0.9); (0.4–0.9);
median = 0 (10th = 0/90th = 1); median = 0 (10th = 0/90th = 2);
n = 50 n = 49
 Vomiting 0.2 (0.5); (0.1–0.3); 0.3 (0.6); (0.1–0.5);
median = 0 (10th = 0/90th = 1); median = 0 (10th = 0/90th = 1);
n = 50 n = 48
  Poor appetite 0.7 (1.0); (0.4–1.0); 1.1 (1.3); (0.7–1.5);
median = 0 (10th = 0/90th = 2); median = 1 (10th = 0/90th = 3);
n = 49 n = 48
 Constipation 0.5 (1.0); (0.2–0.8); 0.7 (1.1); (0.4–1.0);
median = 0 (10th = 0/90th = 2.1); median = 0 (10th = 0/90th = 2);
n = 48 n = 49
  Feeling sleepy 1.7 (1.1); (1.4–2.0); 1.9 (1.2); (1.6–2.2);
median = 2 (10th = 0/90th = 3); median =2 (10th = 0/90th = 4);
n = 50 n = 49
  Difficulty sleeping 1.3 (1.2); (1.0–1.6); 1.1 (1.3); (0.7–1.5);
median = 1 (10th = 0/90th = 3); median = 1 (10th = 0/90th = 3);
n = 51 n = 48
  Mouth problems* 0.4 (0.8); (0.2–0.6); 0.8 (1.0); (0.5–1.1);
median = 0 (10th = 0/90th = 2); median = 0 (10th = 0/90th = 3);
n = 49 n = 49
 Drowsiness 1.2 (1.1); (0.9–1.5); 1.5 (1.3); (1.1–1.9);
median = 1 (10th = 0/90th = 3); median = 1 (10th = 0/90th = 4);
n = 50 n = 48
 Immobility 1.6 (1.1); (1.3–1.9); 1.7 (1.3); (1.3–2.1);
median = 2 (10th = 0/90th = 3); median = 2 (10th = 0/90th = 4);
n = 51 n = 49
POS quality of patient care 1.9 (2.5); (1.2–2.6); 2.9 (2.7); (2.1–3.7);
(mean POS-C items)** median =0 (10th = 0/90th = 6.4); median = 2 (10th = 0/90th = 6.9);
n = 45 n = 40
Practical problems 0.7 (1.4); (0.3–1.1); 1.1 (1.2); (0.8–1.5);
median = 0 (10th = 0/90th = 4); median = 0 (10th = 0/90th = 2);
n = 47 n = 45
Time wasted 0.6 (1.2); (0.3–0.9); 1.4 (1.6); (0.9–1.9);
median = 0 (10th = 0/90th = 2); median = 0 (10th = 0/90th = 4);
n = 49 n = 44
Information needs 0.5 (0.9); (0.3–0.8); 0.4 (0.9); (0.2–0.7);
median = 0 (10th = 0/90th = 2); median = 0 (10th = 0/90th = 2);
n = 51 n = 49
POS patient well-being 5.8 (3.4); (4.8–6.8); 6.4 (2.8); (5.6–7.2);
(mean POS-C items) median = 6 (10th = 1/90th = 10); median = 6 (10th = 3/90th = 11); n = 48
n = 49
Patient’s ADL (mean ADL) 91.6 (11.1); (88.2–95.0); 87.6 (17.1); (82.3–92.9);
median = 95 (10th = 70/90th = 100); median = 95 (10th = 65.5/90th = 100);
n = 42 n = 40

HF: heart failure; LC: lung cancer; SD: standard deviation; CI: confidence interval; POS-S: Palliative Care Outcome Scale–Symptom; POS-C: Palliative
Care Outcome Scale–Core; ADL: activities of daily living.
Result significance (after Hochberg’s procedure): *Z = −2.65, p = 0.01, 95% CI lower = 0 and upper = 0; **Z = −2.18, p = 0.03, 95% CI lower = −2
and upper = 0.
652 Palliative Medicine 27(7)

Table 3.  Caregiver levels of burden, positive caring experiences and other problems.

Caregiver variable HF caregivers LC caregivers

Mean (SD); (95% CI); median Mean (SD); (95% CI); median
  (10th/90th centiles); number (n) (10th/90th centiles); number (n)
Burden (ZBI-12) 9.6 (9.0); (7.0–12.2); 11.1 (8.7); (8.6–13.6);
median = 8 (10th = 0/90th = 22); median = 9 (10th = 0/90th = 24.2);
n = 48 n = 47
Positive caring 21.5 (8.3); (18.9–24.0); 22.0 (8.1); (19.6–24.4);
experiences median = 23 (10th = 8.6/90th = 30); median = 24 (10th = 11/90th = 31.6);
n = 42 n = 43
Anxiety (HADS-A) 7.7 (4.1); (6.6–8.8); 8.2 (4.4); (7.0–9.4);
median =7 (10th = 3/90th = 15); median = 8.0 (10th = 3/90th = 14);
n = 50 n = 49
Depression (HADS-D) 4.6 (3.5); (3.6–5.6); 5.1 (3.6); (4.1–6.1);
median = 4 (10th = 1/90th = 9.8); median = 5 (10th = 0/90th = 9);
n = 51 n = 48
Quality of life (SF-36)
 PCS 42.8 (14.0); (38.9–46.7); 46.9 (10.3); (43.9–49.9);
median = 45.2 (10th = 22.5/90th = 58.8); median = 47.8 (10th = 33.4/90th = 59.9);
n = 50 n = 46
 MCS 47.6 (10.7); (44.6–50.6); 45.1 (11.8); (41.7–48.5);
median = 48.8 (10th = 28.2/90th = 60.3); median = 47.9 (10th = 27.1/90th = 56.7);
n = 50 n = 46
Sleep (PSQI) 8.0 (4.1); (6.8–9.2); 7.8 (3.7); (6.7–8.9);
median = 7 (10th = 3, 90th = 14.3); median = 8 (10th = 3.4/90th = 13.2);
n = 46 n = 43
Caregiver variable HF caregivers (% using coping style LC caregivers (% using coping style
(95% CI)) (95% CI))
Coping style
 Problem-focused 86.7 (73.8–93.8); n = 45 91.1 (79.3–96.5); n = 45
 Emotion-focused 97.9 (88.9–99.6); n = 47 93.5 (82.5–97.8); n = 46
 Dysfunctional-focused 82.6 (69.3–90.9); n = 46 87.0 (74.3–93.9); n = 46

HF: heart failure; LC: lung cancer; SD: standard deviation; CI: confidence interval; ZBI-12: Zarit Burden Interview Short Form 12; HADS-A: anxiety
sub-scale of Hospital Anxiety and Depression Scale; HADS-D: depression sub-scale of Hospital Anxiety and Depression Scale; SF-36: Short Form-36;
PCS: Physical Component Summary; MCS: Mental Component Summary; PSQI: Pittsburgh Sleep Quality Inventory.
No significant differences between caregiver groups.

patient ‘mouth problems’ more severely compared to HF
caregivers, although scores were low (mean score = 0.35 in
HF and mean score = 0.78 in LC groups, a ‘slight’ problem)
(Table 2). LC caregivers reported worse mean patient ‘qual-
ity of care’ (comprised time wasted on appointments, prac-
tical problems not being met and information needs)
compared to HF caregivers. Regarding activities of daily
living (ADL) scores, caregivers reported that assistance
was most often required to help patients in going up stairs
and transferring. This was similar for both groups. Mean
total ADL score reported by caregivers was similar for both
HF and LC patients (Table 2).
19% (95% CI = 8–30%) of HF caregivers reported severe
burden (score of >16 on the ZBI SF-12). HF and LC car-
egivers scored approximately the same on the most
important item, ‘feeling stressed between caring and
other responsibilities’ (about 20% of caregivers from
both groups), and very similarly for most other items.
Both groups of caregivers rated similar positive aspects
and rewards from their caring experiences (mean score of
21.5 on the positivity scale for HF and 22.0 for LC car-
egivers). Total ZBI - 12 score and the total positivity
score were only weakly negatively correlated (ρ = −0.26,
p = 0.05, n = 84).

Caregiver reports of burden and positive Caregiver reports of other problems

caring experiences HF and LC caregivers reported similarly severe problems
Mean burden scores were similar in both caregiver groups with their sleep (mean global PSQI of 8.0 in HF caregivers
(Table 3): 30% (95% CI = 17–43%) of LC caregivers and and 7.8 in LC caregivers (Table 3)): 74% (95% CI = 61–84%)
Malik et al. 653
of HF caregivers and 70% (95% CI = 56–81%) of LC car-
egivers described severe sleep disturbances (PSQI score > 5),
with no differences between groups. Scores on caregiver anx-
iety and depression sub-scales of Hospital Anxiety and
Depression Scale (HADS) were similar in both HF and LC
caregiver groups (Table 3). Overall, caregiver anxiety scores
were higher than their depression scores. Caregiver quality of
life (using the SF-36) was also similar for both HF and LC
caregivers (Table 3).
Caregivers used on average eight different coping strate-
gies. The most common coping strategy employed was
‘acceptance’, with over 90% of caregivers from both LC
and HF caregiver groups reporting use of this strategy.
There were no differences in overall types of coping mech-
anism (emotion-focused vs problem-focused vs dysfunc-
tional-focused coping) (Table 3).
Factors associated with caregiver burden
Univariate analysis found significant associations between
total burden score (ZBI-12) and caregiver depression (ρ =
0.4, p = 0.01), caregiver anxiety (ρ = 0.5, p = 0.01), worse
caregiver quality of life (ρ = −0.5, p = 0.01), caregiver
reports of poorer quality of patient care (ρ = 0.5, p = 0.01)
and ‘patient well-being’ (ρ = 0.4, p = 0.01), caregiver sleep
quality (ρ = 0.4, p = 0.01), not receiving help from family
and friends (z = −1.98, p = 0.05) , caregiver age ρ =0.3,
p =0.05) and caregiver dysfunctional coping style (ρ = 0.4,
p = 0.01). Burden was not associated with patient diagnosis
or severity of patient breathlessness. Factors entered into
models for total burden score (ZBI-12) were caregiver
depression and anxiety, caregiver mental health–related
quality of life, caregiver reports of patient quality of care
and well-being, caregiver global sleep quality, whether the
caregiver was receiving help from friends and family, car-
egiver age, positive caring experiences and ‘dysfunctional’
coping use. Stepwise regression showed that the model that
best predicted caregiver burden contained caregiver reports
of poorer patient quality of care (β = 0.38, p = 0.01) and
caregiver poorer mental health–related quality of life (SF-
36 Mental Component Summary (MCS)) (β = −0.41, p <
0.0005). This model explained 37% of the variance in car-
egiver burden score (R2 = 0.37, F = 12.2, p = 0.01). Standard
multiple regression undertaken in the sensitivity analysis
showed almost identical results, although levels of signifi-
cance were higher.
Factors associated with positive caring
experiences
Significant associations were found between scores on the
positive caring experiences scale and caregiver reports of
severity of patient breathlessness (ρ = −0.38, p = 0.01),
caregiver mental health–related quality of life (ρ = 0.31, p
= 0.01), caregiver depression (ρ = −0.43, p = 0.01), car-
egiver anxiety (ρ = −0.25, p = 0.05) and caregiver reports
of worse patient ‘well-being’ (ρ = −0.22, p = 0.05) and
caregiver burden (ρ = −0.26, p = 0.05) (Table 3). Patient
disease group was not associated with positive caring
experiences. Factors entered into models for positive car-
ing experiences were caregiver depression and caregiver
anxiety (sub-scales of HADS), caregiver mental health–
related quality of life (MCS SF-36), caregiver reports of
patient breathlessness (Borg score), caregiver levels of
burden and caregiver reports of patient ‘well-being’ as the
independent variables. Stepwise regression showed that
the model that best predicted positive caring experiences
contained caregiver reports of severity of patient breath-
lessness (Borg score) (β = −0.26, p = 0.02) and caregiver
depression (HADS-D) (β = −0.23, p = 0.04). This model
explained 15% of the variance in positive caring experi-
ence score (R2 = 0.15, F = 4.4, p = 0.04). Standard multi-
ple regression found a very similar result for patient
breathlessness, but depression was not independently sig-
nificant (R2 = 0.12, F = 7.69, p = 0.01).
Discussion
This study had two principal findings. First, those looking
after breathless patients report high levels of unmet needs
and burden, which are equal in HF and LC caregivers.
Second, caregivers looking after more severe breathless
patients report fewer positive caring experiences. The car-
egivers in our study were similar in age, gender (predomi-
nantly female) and relationship (to patients – mostly
spousal) to those in other studies of both HF and LC car-
egivers,24–27 suggesting that our results are generalisable to
wider communities of HF and LC caregivers, when patients
have more advanced disease.
Caregivers of breathless patients with HF and LC
described similar needs, caring experiences, severity of
patient breathlessness and levels of burden. Despite this
level of need, fewer patients with HF and, by consequence,
their caregivers are known to receive palliative care.10,11
Reasons for underutilisation include a ‘perception that
patients with cancer have more symptoms and psychologi-
cal needs’ than HF patients.11 However, our study provides
evidence from caregiver reports of symptoms, suggesting
that this is not the case, as there are similar levels of unmet
need.
Although HF and LC caregiver and patient character-
istics were mostly similar, we found that the HF caregiv-
ers were more isolated and the patients they cared for had
been living with the disease for longer. This may relate to
the different disease trajectories for HF and LC patients.
The LC trajectory is typified by a shorter period of
decline in the last months of life, with fluctuations in
symptoms and problems during this time.9 For HF
patients, the trend is described as a slow decline punctu-
ated by acute exacerbations.28 Caregivers may adjust
654 Palliative Medicine 27(7)
their expectations over time and get accustomed to a life
caring for a patient. However, duration of illness may
increase isolation and exhaustion, leading to an accumu-
lation of burden and restrictions on life over time. In both
conditions, sudden onset of breathlessness and episodic
breathlessness may be especially problematic and dis-
tressing, especially when the breathlessness is difficult to
control.29,30 Fluctuation in any disease trajectory also
leads to more variable caregiver and patient requirements
and greater unpredictability in the degrees of help needed
at any one time.
LC caregivers reported more concerns about patient
quality of care (on POS); in particular, they were more con-
cerned about time spent on health-care appointments.
Although both HF and LC participants were recruited from
hospital settings (i.e. in contact with services), LC patients
often undergo long courses of cancer treatments. Therefore,
LC caregivers may feel that time is precious with much
valuable time used up waiting for treatment and transport.
Caregiver reports of wasted time may also reflect how they
feel it personally interferes with their own life.
Experiences of burden and positivity
This study found that looking after patients with more
severe levels of breathlessness can affect caregivers, who
tend to report fewer rewards to their caring. Regardless of
patient disease, caregivers reported both negative and posi-
tive aspects of caring. Most HF and LC caregivers reported
moderate levels of burden, supporting other studies.31–33
Participants were selected from those known to hospital
services; therefore, they may have already benefited from
support in the management of their symptoms. Despite this,
a proportion of HF and LC caregivers still reported severe
burden levels (nearly one-third of LC and one-fifth of HF
caregivers).
There is little previous evidence on the relationship
between positive caring experiences and breathlessness.
This study found that carers with lower levels of depression
who were looking after patients with lower levels of breath-
lessness were more likely to report positive caring experi-
ences, although this result needs further validation as it was
not found in our sensitivity analysis. Research has shown
that breathlessness is a very isolating symptom leading to
social losses for patients.3,34,35 Caregivers may feel that
patient breathlessness impacts their life, by causing limita-
tions to shared activities and social life, a loss of compan-
ionship and increased feelings of responsibility. When this
occurs alongside depression, it may limit caregivers ability
to find any positive side to caring. The nature and duration
of symptomatic breathlessness experienced, and its effect on
how much additional support and care patients need, may
also impact caregiver burden and positive caring experi-
ences. Qualitative research has found that breathlessness is
an especially challenging symptom because caregivers feel
that they have few strategies to relieve it and/or are ill pre-
pared for acute exacerbations.36 Other qualitative data, com-
paring the experience of patients and caregivers across
conditions, found that breathlessness functions as a reminder
of patients’ mortality despite the hopes they put in treatment
and contributes to the negative effects of other symptoms.37
Regarding caregiver burden, caregivers who reported
poorer ‘quality of patient care’ and poorer carer mental
health were more likely to report burden. Practical prob-
lems not being addressed were important for both caregiver
groups. This may reflect caregivers’ own worries regarding
breathlessness and its consequences and practical issues not
being dealt with. Previous research shows that caregivers
with higher positivity scores have been found less likely to
identify practical problems.20 Caregivers reporting caring
as rewarding (as opposed to ‘burdensome’) reported higher
satisfaction with health professionals and health and social
services.38 However, findings relate to caregiver reports of
quality of care, which may be influenced by caregiver
mood. Moreover, poorer caregiver mental health was inde-
pendently related to burden. The finding of depression and
anxiety contributing to caregiver burden has been reported
previously39–42 and, although unsurprising, is important as
it affects interventions for burden. Given the high levels of
psychiatric morbidity found, it is important to assess for
and treat caregiver anxiety and depression where found.
Taken together, these results point to the need for future
interventions in breathlessness to ensure that caregivers are
supported, alongside patients. The evidence base regarding
caregiver interventions is improving but remains generally
weak.43 The relationship between the patients’ breathless-
ness and the caregiver experience suggests that interven-
tions that assess the need for support for both patients and
caregivers may well be fruitful. Such approaches are being
developed in some new palliative care services.44,45 Such
interventions should particularly target those looking after
more breathless patients, aim to promote the positive
aspects of caring and help reduce burden by relieving car-
egiver depression and anxiety and improving the quality of
care in both patient and caregiver. Our study findings point
to a need to address practical needs, streamline hospital and
community services to avoid waste of time and provide
specific information on the assessment and management of
breathlessness, including how caregivers may help to man-
age patient breathlessness, perhaps with psycho-educa-
tional approaches.
Limitations
Due to the cross-sectional nature of the data, this study can
only report associations between burden and positive car-
ing and other factors, rather than causal relationships.
Longitudinal research would be needed to study this; our
findings may form the basis for such research. Patients (and
their caregivers) already known to HF or cancer services
Malik et al. 655
were recruited. Therefore, these findings may not represent
those in the community not known to HF or oncology ser-
vices or those whose breathlessness is too great for them to
attend outpatient clinics, where caregiver burden may be
higher. Patients were included only when they had a main
caregiver. This may have precluded younger patients or
those with better functional status who may have less need
for care, but this was not the focus of our study. The simi-
larity between our caregivers and those in other studies cor-
roborates the external validity of our findings. Different
services may influence the patient and caregiver in differ-
ent ways; for example, hospital HF services may offer dif-
ferent levels of support when compared to community HF
services. We have not analysed which patients were in con-
tact with specialist palliative care services, which may have
influenced the findings, although it is unlikely for most of
the HF patients. Further work on the use of different types
of services and levels of burden should be investigated to
understand the influence of different types of care and sup-
port mechanisms.
Our study was powered to find a difference between HF
and LC in caregiver burden. It is possible that there were
differences between other variables, which we were not
powered to detect. However, the many similarities between
these two groups in terms of severity of caregiver depres-
sion, anxiety, quality of life and so on suggest that these
similarities are real and any difference, which does exist, is
not clinically important.
Despite the fact that breathlessness severity was an
independent predictor of less positive caring experiences
(among variables entered), this may represent a conserva-
tive estimate, as most patients in the sample were experi-
encing breathlessness. Measuring duration of symptomatic
patient breathlessness and its relationship to burden/posi-
tive caring experiences would also be useful in further
clarifying these relationships.
Conclusions
HF and LC caregivers caring for breathless patients report
similar needs and burdens, which are currently not being
met. Despite evidence and guidance recommending that car-
egivers need access to sufficient levels of practical and emo-
tional support to enable them to fulfil the role of caregiver,46
we found that this access is not always routinely available to
caregivers particularly for our HF caregivers, who were
more isolated and received less help. Additionally, caring for
a breathless patient affects the caregiver’s life with fewer
positive caring experiences reported in those looking after
more breathless patients. Our results suggest that services for
breathless patients need to provide additional interventions
for caregivers, which may include guidance on management
of the symptom as well as support. This should be available
according to breathlessness severity and caregiver need,
rather than patient primary diagnosis.
Acknowledgements
The authors are grateful to the patients and the caregivers who took
part and all the staff who helped and supported this study. F.A.M.
designed the study with M.G. and I.J.H, conducted the study and
drafted the manuscript. I.J.H. and M.G. critically revised it. All
authors read and approved the final manuscript.
Declaration of conflicting interests
The authors declare there is no conflict of interest.
Funding
This work was supported by a grant from Cicely Saunders
International (CSI). I.J.H. won funding for the PhD training fel-
lowship, which F.M. was awarded to complete this work in open
competition.
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