Cultural Competence in Occupational Therapy: The Client Experience

A DISSERTATION
SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL
OF THE UNIVERSITY OF MINNESOTA
BY

Peggy Mae Martin

IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF

DOCTOR OF PHILOSOPHY

Rosemarie Park, Adviser

December, 2007
 UMI Number: 3295693

Copyright 2007 by
Martin, Peggy Mae

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© Peggy Mae Martin 2007
 i

Acknowledgements

This research represents an effort by many people wanting to improve the health

care experience. Caring is the core of this study. I am indebted to those past-clients of

occupational therapy who gave voice to their experience. You inspire me to make things

better.

I have had much support, guidance and encouragement over the years required to

complete this study. Each person is held in my memory and all are deserving of great

thanks. Thank you to my committee members for encouraging me along the way: Cherie

Peterson, Peter Morley, Baiyin Yang, and Barbara Brandt. Each of you offered formative

perspectives to this study. Each of you guided me to grow as a researcher. A large thank

you goes to my adviser, Rosemarie Park. You were always there, providing ballast when

steadying was needed and encouragement when progress was slow.

My family's support was instrumental. Ellie, your love and support enabled me

to stay focused while your sharp wit challenged me to push my boundaries. You make

my world right. My children, Rod, Derek, and Ellie, thank you for tolerating my

obsession with learning. Your support is appreciated throughout my very being. Debi,

you enabled this project to begin and grow. Mom, extended family and dear friends

thank you for listening, encouraging and being there when I needed you. You are all my

collaborators in this project. Thank you.

 ii
Dedication

This dissertation is dedicated to my children who have lived nearly their entire youth with
a mother who has been a student, and to my father who encouraged me to start, but
wasn't able to see me finish.
 iii
Abstract

This phenomenological study adds understanding of the occupational therapy

process when a client differs racially or ethnically from their occupational therapist.

Occupational therapy enhances the well-being of people despite impoverished

environments and/or impairments. Treatment goals embraced by occupational therapists

commonly reflect western cultural values including individualism, independence, and

productivity. Oral descriptions of receiving occupational therapy told by five past clients

of occupational therapy were transcribed into written text and analyzed into themes using

phenomenological methods. Participants described their experience of receiving

occupational therapy using the research question, what is the experience receiving

occupational therapy when you are racially or ethnically dissimilar from your therapist?

Six major themes were found core to the phenomenon of being racially or

ethnically different from the occupational therapist during therapy: coming to therapy,

worry and concern, being greeted, understand my culture, see me like anybody else, and

put yourself in my shoes. Recipients of occupational therapy are first patients, with all

the worry and concern that patients experience when occupational therapy is indicated.

Being greeted is the welcoming invitation to therapy. Understand my culture speaks to

the central role that is played by culture in the everyday lives of the participants. Put

yourself in my shoes describes the empathic relationship developed between the patient

and therapist over the course of treatment.

This study supported theories of multiple cultures interacting together within each

clinical encounter. Culture, as a part of each client, interacts with culture of the health

care provider and culture of the health care facility to create a health encounter.
 iv
Recipients of occupational therapy notice the environment, the level of respect directed

toward other clients, and the therapists' awareness of health beliefs. Findings may be

used to increase the conscious awareness of the occupational therapists of those actions

perceived by clients as culturally competent.

 V

TABLE OF CONTENTS

Acknowledgments i
Dedication ii
Abstract iii

Table of Contents v

List of Tables vii

Chapter One: Framing Culturally Competent Occupational Therapy

Practice 1
The problem 1
Health disparities 1
The meaning of culture 5
Race, prejudice and stereotypes 8
Cultural competency 10
Occupational therapy 13
Research question 17

Chapter Two: Review of Cultural Competence Theories in Health care and

Other Related Research 19
Review of cultural competence in healthcare theories 19
Models of culturally competent health care systems 21
Models of culturally competent clinical encounters 23
Educational models for developing culturally competent practitioners 28
Research on cultural competency in healthcare 30
Summary 37

Chapter Three: Phenomenology 54

Overview of the phenomenological approach 54
Defensibility of knowledge claims 63
Phenomenological method 67

Chapter Four: Expression of Meaning 84

Structure of the experience of receiving occupational therapy 86
Coming to therapy 87
Worry and concern 90
Being greeted 94
Understand my culture 97
See me like anybody else 103
Put yourself in my shoes 106
Feeling caredfor 108
Let me be me 114
 vi

Summary ,. 119

ChapterFive: Discussion ... 121

Interpretation of the Phenomenon 122
Coming to therapy 122
Worry and concern 123
Being greeted 124
Understand my culture 129
See me like anybody else 133
Put yourself in my shoes 136
Implications for occupational therapy 142

Chapter Six: Thoughts for the Future 148

Limitations of the study 148
Future research 150
Advice to occupational therapy practitioners 151
Summary 152

Coda: 153

References 155

Appendix A 170
 vii
List of Tables

Table I: Comparison of models of culturally competent health care 40

Table II: Literature Recommendations at the patient/ provider level 47

Table III: Literature Recommendations the health care organization level .... 49

Table IV: Literature recommendations at the political/advocacy level 51

Table V: Recommendations from the literature for health professions curricula 52

 1

CHAPTER 1

FRAMING CULTURALLY COMPETENT OCCUPATIONAL THERAPY PRACTICE

The focus of this proposal is to gain understanding of the phenomenon, cultural

competency in one area of healthcare practice, occupational therapy. The review of

current literature focuses on cultural competency in one discipline that is characterized by

long client-practitioner relationships and intervention based on culturally mediated

everyday tasks of living.

The Problem

Americans receive unequal health care. At the same time America is changing its

face. Minorities are becoming majorities, the lower class is growing, people are aging,

and chronic health conditions are on the rise. More Americans are requiring

rehabilitation services. Yet nearly all healthcare practitioners, including those in

rehabilitation, are white. Health care practitioners increasingly must care for clients who

are different from themselves. Yet theories that form the basis of caring professions

emerge from Western, white, middle- class values because of their dominant privileged

authorship. This research is designed to better understand the healthcare experience from

a different perspective, that of the diverse client.

Health Disparities

Health disparities exist whenever two groups have differing levels of health.

Most commonly this has been looked at by race. It is known that Americans receive

unequal health care. People of racial and ethnic minority groups receive lower quality of

care even when insurance coverage and socioeconomic status are controlled (Institute of
 2
Medicine, 2002b). They are more likely to be disabled, and they die younger (U.S.

Census, 2001). People who self-identify as non-whites or Asians are more likely to rate

their health as fair or poor. We know that African Americans and Mexican Americans

have more diabetes than people who are white (James, Thomas, Lillie-Blanton, &

Garfield, 2007). We know that all race/ethnicities are nearly twice as likely to be obese

as Asians and Pacific Islanders (James et al., 2007). This is important because of the

contributing role played by obesity to numerous diseases. These disparities are not

genetic (Institute of Medicine, 2002b). The Human Genome Project reported that all

humans are 99.9% similar at the DNA level (Collins and Mansura, 2001), a finding

which led the Institute of Medicine (2002b) to proclaim that "health disparities are likely

a result of social categorizing, not biology". People in varying social groups receive

differing health care.

It is also known that racial and ethnic minority Americans have less access to

preventive and primary care. This is particularly the case for Hispanics who are the

group least likely to have a usual source of healthcare (James et al., 2007). Poor people

are less likely to have a primary care clinic or to experience a health care encounter

within the past year, but even when income is accounted for, Hispanics still have the

fewest health care visits (James et al., 2007).

Although not studied as much as primary care, health disparities also exist in

rehabilitation services. For example, Hoenig, H., Rubensteinm, L., and Kahn, K. (1996)

found that patients who received care in smaller hospitals received fewer referrals to

occupational therapy or physical therapy than those who received care in large or urban
 3
hospitals. Further, they found that when care was initiated, patients in smaller rural

hospitals received fewer numbers of treatments. This finding implies a geographic

disparity in care. In all settings, however, these same researchers found that African-

American patients received fewer visits than non-African-American patients. To

contrast, occupational therapy and recreation therapy was ordered more often for African-

American patients receiving psychiatric care (Flaherty & Meagher, 1980). Skawski

(1987) found that occupational therapists viewed ethnic or racial background as an

impediment rather than an enhancement to treatment. A review of patient charts found

that occupational therapists generally only noted the race or ethnicity in non-white cases,

the standard dominant assumption being that all patients were white unless otherwise

noted (Cena, McGruder, & Tomlin, 2002).

Most recently, researchers are learning about the impact of poverty on health.

Poor people rate their health as fair or poor. This means that a notable part of the

disparity in how people of differing racial or ethnic groups rated their own health was

due, in part, to their socioeconomic status (James et al. 2007). The unemployment rate is

often used to explain poverty. Rates of uninsured workers vary dramatically by state. In

Minnesota the white (non-Hispanic) uninsured worker rate is 8%, compared to as high as

20% in West Virginia. In Minnesota the 2004- 2005 uninsured worker rates were

reported: White = 8%; African American = 13%; Hispanic = 37%; Asian and Pacific

Islander = 8% (James et al., 2007).

 4
Whites are also most likely to have health insurance and more likely to receive

that health insurance from their employer. Hispanics have the highest percentage of

uninsured people with 34% of individuals surveyed reporting no insurance, compared to

13% of whites (James et al., 2007). Even among workers who receive health insurance

from their employers, disparities exist. Hispanics followed by American Indian/Alaska

Natives have the highest percentage of employed people without health insurance (39.6%

and 32.1% respectively, compared to 14.1% of whites). This means that, once employed,

whites are twice as likely to be offered health insurance from their employer (James et

al, 2007).

To summarize, health disparities exist. People of non-majority race and ethnicity

experience poorer health. They also experience more poverty. It is unclear how much of

the health disparity is from differential access to health care, lack of health insurance, or

varying health beliefs. What is known is that overall health disparities are not a result of

any genetic variation since genetic variation among racial groups is virtually non-existent

(Institute of Medicine, 2002b).

These findings are especially significant in light of the changing population

demographics of the United States. According to the 2000 U.S. Census (2001), the 1990

to 2000 population growth was the largest in history with the greatest proportion of

growth in the non-white categories. By 2050 only 50% of the U.S. population will be

non-Hispanic whites (U.S. Census, 2001). Additionally, more people self-identify as

having chronic health conditions or disabilities (U.S. Census, 2001). As the population

ages, more chronic health conditions are expected to occur (Institute of Medicine,
 5
2002b). Not only is the population becoming more ethnically diverse, it is also requiring

more health service.

Most health care workers are white and practice from a western worldview

(Skelton, Kai & Loudon, 2001). It is estimated that minority groups comprise less than

6% of doctors and only 9% of nurses (Cooper & Powe, 2004). Non- white groups

approximate only 10% of the total health professions workforce (Kamat, 1999). Clearly,

all health care workers will increasingly interact with clients who are different from

themselves.

The Meaning of Culture

Culture has been defined in many ways. Common to most definitions is the

concept of core practices that guide social behavior and shape social identities (Watson,

2007). This occurs through "shared meanings" by which members of a social group

communicate and interact (Dyck, 1998). Some describe culture as a framework used to

interpret experience through shared ideas, concepts, and knowledge (Dyck, 1998).

Traditional views of culture hold that members of a group share heritage, descent,

language, traditions, religion, and other common cultural features. This worldview

provides individuals an orientation to such concepts as God, man, death, life after death,

the universe, and health. Our shared worldview can be so pervasive that it is tacit or

taken for granted. We assume that everybody believes and values as we do about the

concepts within our worldview. For example, the Afrocentric worldview is collectivist

and believes all life events to be tied together, interacting with one another (Watson,

2007). The Eurocentric worldview is more individualistic, valuing personal freedom

 6
with rights of autonomy and independence (Watson, 2007). Culture is how this

worldview passes from one generation to another. When one interacts with someone who

challenges a worldview, value differences are made most prominent.

A traditional view of culture is that it is important to maintain social order. It is

relatively static and passed from generation to generation (Dyck, 1998). This traditional

view is challenged by a view of culture that is dynamic and changing. From this view,

culture is fluid and constantly being remade (Dyck, 1998). Rather than focusing only on

the values and beliefs held by a group of people, this view acknowledges the collective

dialogue used to form those values and beliefs. Meaning is shared between a people

within a group as the "community understands itself to itself (Douglas, 2004, p. 88).

Viewed this way, culture gives healthcare professionals a way to understand how people

live socially within their communities.

Culture shapes identities (Watson, 2007). Now it is more common for people to

consider themselves to be a part of many groups and not embedded in a single group or

culture. When one identifies with a particular group one is selecting an ethnicity. Ethnic

groups are "groups that think of themselves as sharing special bonds of history and

culture that set them apart from others" (Stark, 2004, p. 328). For example, a friend,

when asked, readily identified herself with the following ethnic groups: hearing

impaired, GLBT, and multinational.

Globalization increases the numbers of groups living together within a society.

This cultural pluralism results when differing ethnic groups focus on similarities rather

than their differences. Cultural pluralism is "the existence of diverse cultures within the
 7
same society" (Stark, 2003, p. 390). An example of cultural pluralism is the religious

pluralism now present in the United States. The U.S. is no longer considered to be a

Protestant nation as was the case in the 1800's. Now we think of ourselves as a nation of

Protestants, Catholics, Jews, and other faiths as well as nonbelievers (Stark, 2003, p.

390).

The term, culture, refers to those beliefs, values, and attitudes shared by members

of a social group (Geertz, 1973). Hofestede (2001) identified five main dimensions along

which dominant societal value systems differ. They are (1) power distance, (2)

uncertainty avoidance, (3) individualism versus collectivism, (4) masculinity vs.

femininity, and (5) long-term versus short-term orientation. Hofstede (2001) suggested

that dimensions "reflect basic problems that any society has to cope with but which

solutions differ" (p. xix). Hofstede (2001) defines power distance as "the extent to which

the less powerful members of organizations and institutions accept and expect that power

is distributed unequally" (p. xix). Uncertainty avoidance is the "extent to which a culture

programs its members to feel either uncomfortable or comfortable in unstructured

situations" (p. xix-xx). Individualism versus collectivism is the degree to which

individuals are responsible for themselves or the group to which they belong.

Masculinity versus femininity is the distribution of emotional roles between the genders

with "tough" typically referring to masculine and "tender" to feminine (p. xx). Long-

term versus short-term orientation is the extent to which a group accepts delayed

gratification of their needs (p. xx). Although Hofstede's dimensions may support a

stereotypical view of culture, they may also provide interesting analysis when applied to
 8
healthcare. Power distance may be the power distribution between healthcare providers

and clients or between varying providers. Uncertainty avoidance may be the extent to

which healthcare providers and clients feel comfortable in being able to solve a health

problem. Individualism versus collectivism is reflected in the focus of western healthcare

on client/patient-centered care. Masculinity versus femininity is seen in the traditional

roles of physician (masculine) and nurse (feminine). Lastly, time orientation is seen in

western health care values of promptness and efficiency. It is possible, even likely, that

these dimensions are not valued equally by all clients or patients. Although these

dimensions emerged from industry, they have yet to be studied in health care.

This research adopted a definition of culture as described by McGruder (2003).

The five attributes of culture are: (1) culture is real, (2) culture is not inherited; it is

learned, (3) culture is not idiosyncratic but is shared in human society, (4) cultures adapt,

and (5) culture is invisible.

Race, Prejudice, and Stereotypes

Race is socially constructed. As stated by McGruder (2003), "Biologists have

shown that there is more variation within than between the so-called races of humans" (p.

83). There are no genetic differences between races. Despite this finding, problems we

attribute to race relations are very real. Race has contributed to historical oppression or

privilege, and has shaped culture (McGruder, 2003). Racism is the belief that legitimizes

inequality between groups of people (Dyck, 1998, p. 73). Racism includes the everyday

social interactions that lead to differential treatment across groups of people. Racism is

often thought of from an individual perspective, but it can also be a part of institutions or
 9
the culture of a society. For example everyday organizational practices designed to

oppress a group of people can be so embedded as to be difficult to recognize from within.

Stereotypes are "mental pictures based on myths that lead people to associate a

characteristic or set of characteristics with particular groups of people" (McGruder, 2003,

p. 84). All of us use stereotypes as a way to group, generalize, and build mental models

in our minds. For example, a common stereotype of a physician may be a white male

wearing a lab coat with a stethoscope around his neck.

Prejudice is "the act or state of holding unreasonable preconceived judgments or

convictions" or "irrational suspicion or hatred of a particular group" (The American

Heritage Dictionary of the English Language: Fourth Edition, 2000). Until recently,

social scientists thought that prejudice was the cause of intergroup conflict (Stark, 2003).

The authoritarian theory was most commonly used to explain why people developed

prejudices. The authoritarian theory proposed that some people are socialized so that

they accept only the norms and values of their own group and reject variations. People

become anxious when confronted with people socialized differently from themselves, so

they adopted beliefs that others were "inferior, sinful, inhuman, or otherwise

objectionable". This theory defined prejudice as a defense mechanism preventing one

from questioning one's own cultural heritage.

More recent theories suggest that intergroup conflict causes prejudice (Stark,

2003). Current theory suggests that racial and ethnic conflicts are a result of status

inequalities between groups. According to Stark, in 1958 Gordon Allport proposed a

theory of prejudice that resulted in a paradigm shift in our knowledge about prejudice.
 10
Allport proposed that if two groups of equal status have contact with each other,

prejudice will decrease. But if one group has more status, or is more dominant than the

other group, then prejudice will increase. This theory has been supported through

research looking at race relations in the southern U.S. and again in the U.S. Merchant

Marine. It was found that it was not until the Merchant Marine was required to integrate

and rank African-American seamen of equal rank as white seamen that the prejudice of

white seamen against African-American seamen began to change (Brophy, 1945 in Stark,

2003). Allport goes on to propose that prejudice will increase if the groups are

competing with each other such as occurs when poor whites are competing with poor

African Americans for jobs. Lastly, prejudice has been found to decrease when differing

ethnic groups cooperate to pursue a common goal such as occurs when two police

officers partner together to solve crimes (Kephart, 1957 in Stark, 2003).

Race, stereotypes, and prejudice are important concepts because of their potential

to impact interpersonal relationships. By their very nature, stereotypes are automatic and

tacit assumptions that likely affect patient-client relationships. Prejudice, or the fear of

prejudice, may also precipitate conflict when associated with the vast majority white,

middle-class healthcare work force and an increasingly diverse multi-class patient group.

Cultural Competency

National standards for culturally and linguistically appropriate services in health

care were adapted from Cross, Brazon, Dennis, and Issaacs (1989) and adopted by the
 11

Office of Minority Health in 2001. Cultural competency, as used by American

governmental agencies, is

.. .congruent behaviors, attitudes, and policies that come together in a system,

agency, or among professionals that enables effective work in cross-cultural

situations.... The capacity to function effectively as an individual and an

organization within the context of the cultural beliefs, behaviors, and needs

presented by consumers and their communities (Office of Minority Health, 2001).

The literature contains many general recommendations to help health care meet

the needs of America's changing and diverse population. These recommendations can be

divided into strategies aimed at health care organizations (Betancourt, Green & Camillo,

2002; Institute of Medicine, 2002; Office of Minority Health, 2001; Schuchman, 2004),

strategies directed toward entry-level healthcare practitioner preparation programs

(American Medical Association, 2004; Barrett, 2002; Betancourt, Green & Camillo,

2002; Brach & Fraser, 2000; Cooper & Powe, 2004; Institute of Medicine, 2002; Office

of Educational Research and Improvement, 1992; Spector, 2000), and strategies for

client-practitioner interactions (Betancourt, Green & Camillo, 2002; Brach & Fraser,

2000; Cooper & Powe, 2004; Health Resources and Services Administration (HRSA),

2001; Institute of Medicine, 2002; Kamat, 1999; Office of Minority Health, 2001;

Schuchman, 2004). This study focused on the phenomenon of culturally competent care

at the client-practitioner level.

Three recommendations appear repeatedly in the cultural competency in health

care literature. First, the need to increase the diversity of the health professions work
 12
force is well documented (Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000;

Cooper & Powe, 2004; Institute of Medicine, 2002; Kamat, 1999; Office of Minority

Health, 2001; Schuchman, 2004). Second, there is a need to increase the common

understanding between clients and practitioners (Betancourt, Green & Camillo, 2002;

Brach & Fraser, 2000; HRSA, 2001; Institute of Medicine, 2002; Office of Minority

Health, 2001; Schuchman, 2004). Third, there is a need for health care providers to gain

respect, appreciation, and sensitivity to individuals they categorize as different from

themselves (Campinha- Bacote, 1998; Cross et al, 1989; Purnell, 2002; HRSA, 2001;

Jibaja, Sebastian, Kingery & Holcomb, 2000; Office of Minority Health, 2001;

Schuchman, 2004; Wells, 1993; W4ells & Black, 2000; Wittmann & Velde, 2002).

The purpose of this research was to investigate the common understanding

between a client and a health care provider when their social categories are quite varied.

Outcomes of enhanced common understanding between a client and a practitioner were

theorized to include improved communication (Bonder, Martin & Miracle, 2002; Cooper

& Powe, 2004; Institute of Medicine, 2002), added trust (Bonder et al. 2002), increased

provider respect and appreciation (Campinha-Bacote, 1998; Cross et al, 1989; Purnell,

2002; HRSA, 2001; Jibaja et al, 2000; Schuchman, 2004; Wells, 1993; Wells & Black,

2000; Wittmann & Velde, 2002), and increased provider self-awareness (Leavitt, 2001;

Wells, 1993; Wells & Black, 2000). The common overall conclusion at this time is that

increased communication, trust, provider respect, and provider self-awareness will lead to

added consumer satisfaction, individualized health strategies, and, ultimately, reduced

health disparities.
 13
Occupational Therapy

Occupational therapy is a rehabilitative health care discipline whose purpose is to

enhance the well-being of people despite impairments caused by injury, disease, or

disability (American Occupational Therapy Association [AOTA], 2005). Often the well-

being of individuals is measured by improved function through increased independence,

increased mastery over the environment, improved mobility, and increased productivity

(American Occupational Therapy Association [AOTA], 2004). Common treatment

outcomes include improved client performance in daily tasks such as self-care, driving, or

community mobility (AOTA, 2005). Occupations, or those units of meaningful every

day activity are believed to be both named and shaped by the culture of the individual

(Larson, Wood, & Clark, 2003). By performing culturally competent care, occupational

therapists strive to improve individual health and well-being through maximal

engagement in life.

Occupational therapy treatment goals commonly reflect western cultural values of

"individualism, independence, materialism, mobility, and productivity (Bellah, Madsen,

Sullivan, Swidler, & Tipton, 1985; Cross, 1990; Kondo, 2004; Pierce, 2003). Tension

may exist when these discipline values are not congruent with those of the client

receiving services. Tomoko Kondo (2004) illustrates this tension in a case study

describing a Japanese man who received western-based occupational therapy

intervention. Kondo, the therapist, tells the story of Shiro, a Japanese elderly man who

was receiving occupational therapy intervention after having had a stroke. Kondo states,

"[this case] seemed to disconfirm the adequacy of the way in which I was prepared as an
 14
occupational therapist" (p. 175). Kondo anticipated and imagined that Shiro would

return home, when in actuality, cultural complexities resulted in discharge to an

institution. Attempting to understand Shiro's decision, Kondo conducted a preliminary

study of occupation and occupational therapy in Japan. She speculated that stronger

values of dependence or interdependence, an emphasis on taking one's proper station

within the structure of society, a dynamically and contextually shifting source of

interpersonal power, virtues of working hard and enduring hardship, and values of

obligation, responsibility, and situated-ness contributed to Shiro's decision to live

collectively in a more dependent role of enduring hardship associated with institutional

living. Kondo concluded stating, "I propose that there is a need for the development of

culture-specific occupational therapy theories that are likely to lead to more culturally

sensitive practice" (175). Cena, McGruder, and Tomlin (2002) examined the

professional literature of occupational therapy by examining 24 years of published

literature for indicators of ethnicity or social class labels and found that indicators were

largely absent. This finding suggests that those exemplar clients may be idealized as

race-less or white and of middle class. The authors state, "In the case of hypothetical

clients constructed as teaching examples or real client cases chosen to illustrate therapy

processes, the relative absence of persons identified as minorities or of lower SES may be

taken to indicate that such persons are not valued as therapy recipients or that their life

situations are seen as too challenging for intervention" (p. 136).

Occupational therapists typically are European-American and come from a

variety of ethnic groups and social classes (Cena, McGruder & Tomlin, 2002), however,
 15
a white middle-class bias is thought to exist within the profession (Cena, McGruder &

Tomlin, 2002; Evans, 1992; McCormack, 1987; McGruder, 1998; Sanchez, 1964). The

most recent data collected by the American Occupational Therapy Association (2006)

identified 86.2% of occupational therapy practitioners as white (non-Hispanic) compared

to 76% of the U.S. Population.

Theories of culture and cultural competency are present in occupational therapy

literature. For example, Bonder, Martin, and Miracle (2004) offered a definition of

culture as "emergent in everyday interactions of individuals" and suggest that enhanced

therapy encounters occur when therapists use careful attention, active curiosity, and self-

reflection/ self-evaluation (pg. 159). Wells and Black (2000) designed a model in which

self-exploration and awareness, knowledge, and skills of the therapist intersect to develop

cultural competence. Case studies, presented in the occupational therapy literature have

explored aspects of cultural competency (Blanche, 1996; Kondo, 2004). No quantitative

or qualitative studies currently exist in occupational therapy literature that specifically

studied cultural competency or outcomes of culturally competent care.

One ethnographic study explored the lived experience of 14 occupational

therapists in the course of their day-to-day practice and found an apparent temporal

rhythm in the therapist-client relationship. The initial stage required negotiating over

therapy goal setting. Therapists felt increased "connecting" to clients when the goals

"just clicked", "not having to sell OT" (p. 202). This was thought to occur most readily

when the value of independence was shared by the therapist and the client. The middle

phase of "doing the work of therapy" felt most "connected" when client and therapist
 16
shared the value of working hard. The final phase, or "seeing how things turned out" was

celebratory when there was common ground between therapist and client over

achievement of therapy goals. Rosa and Hasselkus (2005) state

The phenomenological data in this study suggest that the ideal of

collaborative, patient-centered practice with patients may not always be

evident or prominent in actual practice, that therapists may lack an

openness to exploring differences with patients over therapy goals and

expectations, and that therapists may often not even seek out

collaborative relationships with patients (p. 204).

This qualitative study suggests that therapists have difficulty finding common ground

with patients.

Only one study was found to examine the therapist-client relationship from the

perspective of the client. In this ethnographic case study, the study participants and the

researcher shared a Japanese ethnic background and both spoke Japanese. Despite these

areas of cultural congruence, a greater need for cultural competency still existed. In a

reflective statement the researcher said, "The clinician's implied culture may often

include the group they represent rather than the group they belong to [ethnic association]"

(p. 269). In this case the researcher found that speaking the same language and sharing

the same ethnic background did not allow her to change the unequal power distribution

between health care worker and client (Blanche, 1995). The researcher concluded that at

least four coping mechanisms were used by this client as the client interacted with the

health care system: (1) denial of cultural differences or the avoidance of cultural conflict,
 17
(2) not questioning during interactions with health care workers, (3) subtle questioning to

trusted people, and (4) passive resistance or "noncompliance" as labeled by the medical

system (Blanche, 1995). While this study examined the day-to-day experience of a

Japanese client receiving occupational therapy services from a Japanese-American

therapist, the study did not address the more common situation that occurs when the

therapist and client do not speak the same primary language and do not share

sociocultural similarities.

In summary, we know that America is becoming increasingly diverse and we

know that the health professions are not representative of population demographics. We

also know that the population is aging and that chronic conditions increasingly dominate

our health services, necessitating more rehabilitation services. We believe there to be a

white middle class bias dominating the health professions, including occupational

therapy. Increasingly, occupational therapists will require skills to bridge cross-cultural

client/ therapist relationships. This requires an understanding of culture and its

influences on the therapy experience.

Research Question

The purpose of this study was to gain understanding of how the client experiences

cultural competency in occupational therapy. While some studies have been conducted

by occupational therapy researchers, it is possible, even likely, that recipients of

occupational therapy service have differing perspectives. This study addressed the

research question, what is the experience receiving occupational therapy when clients

differ racially or ethnically from their therapist?

 18
This chapter described the research problem leading to the research question.

Chapter two reviews the relevant literature with particular emphasis on theories of

culturally competent health care. Chapter three describes the methodology used to

examine the research question. Chapter four describes the findings and chapter five

interprets these findings in relation to the current literature.

 19
CHAPTER 2

REVIEW OF CULTURAL COMPETENCE THEORIES IN HEALTH CARE AND

OTHER RELATED RESEARCH

Health care professions aim to provide culturally competent care. The literature

contains writings about culturally competent care, yet one comprehensive theory

explaining what it is and how one becomes culturally competent has not emerged. This

chapter will describe and critique existing theories of cultural competency, describe the

research on cultural competency as it relates to healthcare, and evaluate the research and

writing in this area.

The literature review is divided into three main areas: a review of theories that

apply cultural competence models to healthcare, a review of educational theories

emphasizing the need to teach cultural competence to health professions students, and an

overview of key recommendations.

Review of Cultural Competence in Healthcare Theories

Theory is the analysis of constructs and the explanations of their inter-

relationships (Merriam-Webster, 2004). Lynham (2002) suggests a recursive journey of

applied theory building research that includes two primary parts: a theoretical part and a

research part. The output of the theoretical part is a "coherent and informed theoretical

framework, which encapsulates and 'contains' the explanation of the phenomenon, issue

or problem that is the focus of the theory" (Lynham, 2002). Outputs of the research part

are the empirical findings and experiential knowledge that is used to further refine and to

develop the existing theory (Lynham, 2002). Theories of cultural competence in health

care have only been refined through this cycle of theory-research-theory since the late
 20
20th century, emerging from the practice problems of equity in healthcare outcomes and

improved quality of care. The literature contains many descriptions and

recommendations for cultural competent care, but only a few models emerged to explain

cultural competent healthcare.

Two main healthcare problems provide the impetus for theories of cultural

competent healthcare: the need to provide care to an increasingly diverse U.S. population

and the desire for equal heath outcomes amongst all Americans. According to the 2000

U.S. Census, the population growth from 1990 to 2000 was the largest in history.

Findings indicate a significant increase in minority and foreign-born populations. More

than 30% of the U.S. population is now composed of minorities other than self-reported

non-Hispanic whites, and it has been estimated that by 2050 nearly 50% of the U.S.

population will be composed of non-Hispanic whites (U.S. Census, 2001). Three states

now have "minority" majority populations (U.S. Census, 2001). Yet these minority

groups comprise less than 6% of the doctors and only 9% of the nurses (Cooper & Powe,

2004), approximately only 10% of the health professions workforce (Kamat, 1999).

Additionally, more people self-identify as having long lasting health conditions or

disabilities (U.S. Census, 2001). Currently, 19.3% of the population aged five years or

greater, or one in five people, see themselves as having chronic health needs. Not only is

the population becoming more ethnically diverse, it is also requiring more health service.

Clearly, all heath care workers will more frequently interact with clients who are different

than themselves.

A report by the Institute of Medicine (2002b) found that racial and ethnic

minority groups receive lower quality of care than the dominant majority, even when
 21
access-related factors such as insurance coverage and socioeconomic status are

controlled. People of racial and ethnic minorities "experience a lower quality of health

services, and are less likely to receive even routine medical procedures than are white

Americans" (Institute of Medicine, 2002b). The report identified potential sources of

these disparities to be patient-level variables (role preferences, treatment refusal, and the

clinical appropriateness of care), health care system variables (access, payment, language

barriers), and care process variables (healthcare practitioner bias, stereotyping, and

clinical uncertainty of symptoms) (Institute of Medicine, 2002b). In addition, U.S.

Census data (2001) reveals that disability rates nearly doubled for people who self-

reported as Black or American Indian/Alaska Native. Not only did people who were

white and not of Hispanic or Latino origins have less disability, they were also older.

These findings became more telling given the findings of the Human Genome Project.

All humans are reported as 99.9% similar at the DNA level (Collins & Mansura, 2001 in

Institute of Medicine, 2002b). The conclusion is that health disparities are likely a result

of social categorizing and not due to biological predisposition (Institute of Medicine,

2002b). Becoming culturally competent for health professionals is a strategy to reduce

these health disparities (Betancourt, Green & Camillo, 2002).

Models of Culturally Competent Health Care Systems

Theories included in this analysis are those that self-identified as models having

identified concepts, assumptions, and explanatory statements of the relationships between

concepts. Models were analyzed using the five key features of a theoretical model

suggested by Reynolds (1971). Reynolds (1971) suggests a hierarchy of ideas ranging

from a dramatic shift labeled a "Kuhn Paradigm" to a paradigm (a unique description of a

 22
phenomenon, but lacking a dramatic shift in "world view") to paradigm variations. Each

model is described in terms of its overarching paradigms, then as concepts. The more

concrete the concept, the more measurable using quantifiable data. Statements were next

identified for their purpose in explaining the phenomena. Reynolds (1971) suggests

labeling statements based on the type of relationships between concepts in order to

specify causal relationships. A well-developed theory would be one where causal

relationships are well-defined.

A theory of culturally competent care ought to include concepts defining key

aspects of cultural competency, descriptions of how they interact to become culturally

competent, and who determines when culturally competent care has occurred. Cultural

competence theories identified and critiqued in this review collectively begin to answer

such questions. Models of culturally competent care were sorted into three categories:

those that explained culturally competent health care systems, those that explained

culturally competent practitioner-client encounters, and those that explained educational

approaches to becoming culturally competent. The eight theories identified and critiqued

are Purnell (2000, 2002) and the "Purnell Model of Cultural Competence"; Bonder,

Martin & Miracle (2002, 2004) and "Culture Emergent"; Brach & Fraser (2000) and

"Conceptual Model of Cultural Competency"; Wells & Black (2000) and the Cultural

Competency Model; Stoy (2000) and "Intercultural Competence"; Leininger (1997) and

"Transcultural Care Model"; and lastly, Campinha-Bacote (1999) and the "Cultural

Competence Model". Viewed collectively, these theories contribute to an understanding

of cultural competence in various health care fields. It is anticipated that such models

will guide content in training programs on cultural competence in entry-level educational

 23
programs, and existing staff training programs. Each will be briefly described. Table 1

illustrates an analysis of these models as detailed below.

Models of Culturally Competent Clinical Encounters

Purnell Model of Cultural Competence

The Purnell Model for Cultural Competence emerged from the field of nursing

and aims to structure nursing assessment and care. The model is a paradigm variation of

client-centered care theories combined with nursing care theories. Based in post-

modernist relativism, the model defines health as "a state of wellness as defined by

people within their ethnocultural group. Health generally includes physical, mental, and

spiritual states because group members interact with the family, community, and global

society." (p. 10). The model identifies 12 domains in an individual's culture: (1)

inhabited topography, (2) communication, (3) family roles and organization, (4)

workforce issues, (5) biocultural ecology, (6) high-risk behaviors, (7) nutrition, (8)

pregnancy and childbearing practices, (9) death rituals, (10) spirituality, (11) health-care

practices, and (12) health-care practitioners. Many of the statements used in the theory

describe an existence, such as, "all health-care professions need similar information about

cultural diversity" (p. 10). A belief exists that all cultures share some core similarities, yet

each person has an individual culture which the health professional ought to ascertain in

order to provide optimal care. A series of belief statements exist to guide nurses in the

collection of information to collaboratively determine patient treatment plans. The

authors describe a continuum as the health professional moves from a state of

unconsciously incompetent in caring for a patient to a stage of unconsciously competent.

Although the author reports much testing of the model, no research studies were found in
 24
this literature search under Cinahl or Medline search engines using the "Purnell Model

for Cultural Competence" as a key word search. More research testing the relationship of

the concepts to patients' health status is needed to support the use of this model (Table 1).

Cultural Emergent Model

The cultural emergent model guides heath practitioners to have successful

cross-cultural clinical encounters. The model draws from anthropology and specifically

ethnography as a way to use inquiry-based learning and cognitive models of learning.

The model views cultural competence as the "ability to attune to the individual while

assessing the impact of community influences" (Martin & Bonder, 2003, p. 93). The

authors describe a process of questioning and note-taking that is done by the practitioner

while simultaneously reflecting upon patterns, imagining alternatives for the client,

estimating the capacity for surprise, and attending to both the individual and the groups

represented by the individual. Health care practitioners require skills in self-monitoring

and self-checking. The goal is to "seek a more elaborated understanding of the behavior

in order to fit it into a context of meaning from the client's point of view" (p. 85) and to

use that vantage in designing care plans.. Mutual accommodation or shared

understanding and is always time and context bound. The strength of this model is its

emphasis on individualization and constructing shared understanding with all clients.

The model draws no links between successful cross-cultural encounters and improved

health outcomes. A general search revealed no studies supporting this model using

Cinahl or Medline search engines. Research studying the use of this model and a

responding increased level of shared understanding between practitioner and client would
 25
strengthen this model. Also, research designed to measure the relationship between

shared understandings and clients' health status is needed (Table 1).

A Conceptual Model of Cultural Competency

Brach and Fraser (2000) suggest a model whose purpose is to reduce racial and

ethnic health disparities. Nine major culturally competent techniques were drawn from

the literature and include: (1) use of multiple methods of interpreter services, (2)

recruitment and retention of minority staff, (3) cultural competency training programs,

(4) coordination with traditional healers, (5) use of community health workers, (6) use of

culturally competent health promotion materials, (7) inclusion of family and/or

community members in treatment, (8) immersion into another culture, and (9)

administrative or organizational accommodations for specific racial or ethnic groups.

Clear causal statements are made between concepts in the belief that specific use of

cultural competent techniques will lead to improved communication, increased trust,

greater knowledge of differential epidemiology and treatment efficacy, and/or expanded

understanding of patients' cultural behaviors and environment. The use of culturally

competent techniques should lead to changes in clinician and patient behavior which

should lead to better provision of appropriate health care services. Appropriate health

services is defined as patient education and prevention materials, individualized patient

care (diagnosis and treatment), and increased patient education on how to follow

treatment guidelines within their cultural environment. Increasingly appropriate services

are expected to lead to improved health outcomes defined as higher levels of health

status, increased functioning, and improved satisfaction. The authors cite evidence to
 26
suggest use of recruitment and retention of minority staff leads to increased patient

satisfaction or mutual understanding between patient and staff (Table 1).

Cultural Competence Model

The Cultural Competence Model (Campinha-Bacote, 1999) strives to provide

higher quality nursing care. It is based in paradigms of post-modern relativism,

communication theory, and theories of caring. Expected outcomes are "understanding,

acceptance, knowledge, and constructive relations between persons of various cultures

and differences" (p. 175). Five constructs are described in the model: cultural awareness,

cultural knowledge, cultural encounters, cultural skill, and cultural desire. Each construct

has an interdependent relationship with each other and all five constructs must be

experienced to become culturally competent. It is the intersection of all five constructs

that is the process of cultural competence. As the area of intersection grows, so does the

internalization of the constructs within the health care provider. A questionnaire has been

developed titled Inventory to Assess the Process of Cultural Competence among

HealthCare Professionals (IAPCC). The author reports acceptable construct and content

validity, but acknowledges a lack of internal consistency. No other reliability testing on

the questionnaire was reported. Research that supports the relationship between level of

cultural competency and quality of nursing care is needed (Table 1).

Transcultural Care Model

This model is built upon previous work by the same author starting in the mid-

1950s in an attempt to explain the "multiple factors influencing and explaining care from

a cultural holistic perspective" (p. 36). The model asserts that the provision of "culturally

congruent care" contributes to the health of all people. It builds upon the paradigms of
 27
humanism, anthropology, and care theory from the nursing literature. In this model,

providing transcultural care results in higher quality nursing care. Seven dimensions

(technological factors, religious and philosophical factors, kinship and social factors,

cultural values and lifeways, political and legal factors, economic factors, and educational

factors) are thought to impact an individual's environmental context. Through language

and ethnohistory, care providers gain understanding of a client's environmental context to

understand influences on an individual's care expressions, patterns, and practices. Well-

being is recognized as a holistic concept and has cultural meaning. The author diagrams

nursing as a discipline that bridges traditional healing practices and the professional

systems of Western medicine. Using this model, the nurse actively selects a stance in

their care decisions and actions. These actions and decisions are related to "culture care

preservation or maintenance," "culture care accommodation or negotiation," and "culture

care repatterning or restructuring care to specifically meet clients' health needs" (p. 41).

"Culture care preservation or maintenance" includes those supportive or assertive

professional actions and decisions that help clients retain their care values and beliefs.

"Culture care accommodation or negotiation" refers to those professional actions and

decisions that help clients adapt to or negotiate with the culture of others, most likely that

of Western medicine. "Culture care repatterning or restructuring" refers to those

professional actions and decisions that help clients modify their patterns of living while

respecting the client's cultural values and beliefs. The strength of this model is that it

acknowledges the active stance taken by care providers when health care practices are not

culturally congruent. This theory seeks laws that govern the care phenomenon for all

people. Research findings were described by the author on the actions and decisions of
nurses. As with the other models, no empirical evidence was found to support

relationships described in the model when using Cinahl or Medline search engines (Table

1).

These models describe idealized culturally competent practice at the individual

care provider level. Other models explain how care providers learn these skills. Each of

these is also detailed in Table 1.

Educational Models for Developing Culturally Competent Practitioners

Cultural Competency Model

Wells and Black (2000) designed a specific model to develop the competency of

healthcare practitioners in multicultural interaction. Although the name of this model is

similar to the "Cultural Competence Model" by Campinha-Bacote (1999), the purpose of

this model differs in its goal of teaching rehabilitative health care practitioners how to

develop culturally competent practice. Cultural competence is considered to be a

process. The outcomes of cultural competency are "understanding, acceptance,

knowledge, and constructive relations between persons of various cultures and

differences" (p. 175). This model builds upon paradigms of cultural pluralism and the

ethical principles of equality, acceptance, and social justice. Cultural competence is

believed to be the intersection of three concepts: self-exploration and awareness,

knowledge, and skills. Self-exploration occurs through increasing cultural awareness,

understanding of one's own culture, and increasing one's tolerance and acceptance of

others. Knowledge is gained through learning about other cultures, preparing for the

stress of intercultural experiences, and increasing the frequency of multicultural

experiences. Skills develop through communication, integrating experiential learning

activities, and developing the ability to access economic, political, and social stress

information on various cultural groups. Although the authors state that improved health

care delivery will be an outcome of the educational intervention, specific guidelines to

interpret "improved" are not provided. No specific research was cited to support this

model. One study was found indicating that gains occurred in cultural sensitivity as a

result of the educational program, but overall scores still indicated a general lack of

cultural sensitivity in its graduates (Jibaja, Sebastian, Kingery, & Holcomb, 2000). This

study has not been replicated with the inclusion of specific cultural competency context

within its curricula (Table 1).

Intercultural Competence

Stoy (2000) attempted to improve health education, public health practice, and,

ultimately, health status with his model of intercultural competence. This paradigm

variation of communication and psychological change motivation theories has expected

outcomes stated in quantifiable ways to include practitioner feelings of success in an

intercultural relationship, mutual feelings of respect and cooperation, efficient tasks, and

minimal stress in intercultural interactions. The model states that health educators need

increased knowledge of cultures followed by increased awareness played by culture in

interpersonal interactions, followed by accepting the emotional challenge of confronting

one's own biases, weaknesses, and stress. This model describes a specific sequence to

the learning. Outcomes of this process include increased attempts to change one's own

behaviors and an increasing amount of new insights. Although no empirical evidence

was cited to support this model, accounts in the literature support outcomes of better

patient satisfaction and understanding when communication is more congruent between

care provider and client (Cooper & Powe, 2004; Harmsen, Meenwesen, Wienngen,

Bernsen, & Bruijnzeels, 2003; Xuequin, 2000). Table 1 compares this model to those

already described in this chapter.

Combined, the cultural competency model (Wells and Black, 2000) and the

intercultural model by Stoy (2000) guide development in the knowledge, skills, and

attitudes considered necessary for health practitioners to provide culturally competent

care. Both suggest how these attributes are acquired across time. The next section will

discuss common areas within the models and areas in which they differ.

Research on Cultural Competency in Healthcare

The literature abounds with general recommendations to help healthcare better

meet the needs of America's changing population. Some of these recommendations are

supported in research and many are not. At a basic level, recommendations represent

basic theory development about cultural competency. Recommendations have been

divided into strategies aimed at the client-practitioner level, the healthcare organization

level, and the educational level of healthcare practitioners. An analysis of published

recommendations into these levels is illustrated in Table 2.

Recommendations considered at the client-practitioner level theorize possible

connections between the individual healthcare provider and the problem of health

disparities. Three recommendations appear repeatedly in the literature. First, the need to

increase the diversity of the health professions work force is well-documented

(Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000; Cooper & Rowe, 2004;

Institute of Medicine, 2002a; Kamat, 1999; Office of Minority Health, 2001; Schuchman,

2004). Although greater diversity amongst health professionals is expected to improve

 31
minority access to and satisfaction with health care, and thus reduce health disparities,

opposition exists to giving "privilege" to any one group (Cohen, 2003; Thomas &

Weinrach, 1998). Fear exists that emphasis on ethnic or racial differences rather than

between-group similarities will have negative long-term effects (Cohen, 2003; Thomas &

Weinrach, 1998). Therefore, increasing underrepresented groups into the healthcare

workforce is dependent upon target-marketing strategies and collaboration with

educational systems to guide students into these disciplines.

Second, there is a need to use interpreters and other language systems during

clinical encounters to achieve more common understanding during health visits

(Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000; Health Resources Services

and Administration, 2001; Institute of Medicine, 2002a; Office of Minority Health, 2001;

Schuchman, 2004). A growing body of literature supports the need for enhanced

communication between the health care provider and the client (Cooper & Powe, 2004;

Harmsen, Meenwesen, Wieringen, Bernsen, & Bruijnzeels, 2003; Xuequin, 2000). For

example, it was found that when the primary care health provider was of the same ethnic

background as the client, more mutual understanding of the health visit occurred

(Harmsen et al, 2003). In another study, language was cited as the largest barrier to

health care when health care utilization barriers and accessibility issues of Chinese

Americans were explored (Xuequin, 2000). Similarly, a lack of trained interpreters was

found to be a critical access barrier to individuals of Hmong ethnicity in Minnesota

(Schuchman, 2004). Clearly, communication ought to be enhanced between health care

providers and their patients.

 32
Lastly, there is an expressed need for healthcare providers to gain respect,

appreciation, and sensitivity to individuals categorized in other cultural groups in order to

provide optimal care (Campinha-Bacote, 1999; Cross, Bazron, Dennis, & Isaacs, 1989;

Purnell, 2002; Health Resources Services Administration, 2001; Jibaja, Sebastian,

Kingery & Holcomb, 2000; Office of Minority Health, 2001; Schuchman, 2004; Wells,

1993; Wells & Black, 2000; & Wittmann & Velde, 2002). Western healthcare has its

own culture. Beliefs include the omnipotence of technology and a definition of health as

the absence of disease. Western healthcare legitimizes preventative practices (physical

exams, immunizations, etc.), hand-washing, habits of charting, and the use of jargon.

Western healthcare practitioners value promptness, efficiency, neatness, organization,

compliance, and professional deference amongst disciplines (Spector, 2004). It is likely

that these values and beliefs are tacit to the health care worker and do not readily apply to

all patient groups.

Managed care also has its own culture. Managed care provides contractual pre-

paid health care for groups of "covered lives" (Lavizzo-Mourey & MacKenzie, 1996). It

originated as benefit plans for employers and has moved into the public arena with

Medicare and Medicaid (Ludmerer, 1999). Managed care systems were initiated for

working middle-class populations (Lavizzo-Mourey & MacKenzie, 1996). Beliefs about

health, illness, and quality of life are culturally based. These beliefs drive decisions

about assessment, treatment options, and other aspects of care. Beliefs central to

managed care may not be congruent with the '"covered lives."

Individual disciplines also have their own culture impacting approaches to

becoming culturally competent (Bonder, Martin, & Miracle, 2002; Eunice, 2004).
 33
Those disciplines, heavily based on a positivistic biomedical perspectives, such as

medicine, traditionally have not given much attention to the cultural aspects of health.

Currently, they tend to focus on those aspects of health that improve common health

statistics (i.e. epidemiological morbidity and mortality rates), are based more in relational

and communication theories, and have a longer history with culturally competent care

(Eunice, 2004). For example, the American Psychological Association established

guidelines for providers to ethnic, linguistic, and culturally diverse populations in 1993

(Eunice, 2004). Disciplines such as social work are based more in the perspective of

education and psychology. Social work, therefore, blends the democratic goals of equity

and justice with the relational emphases of psychology (Eunice, 2004). It is clear that

health care disciplines have approached cultural competence differently. The literature is

less clear about the existence of a unifying approach to cultural competency across all

disciplines and what may be unique variations of cultural competency in individual

disciplines.

"Culture" has been theorized and researched for unifying characteristics. Some of

these theories impact beliefs about cultural competency in health care. Lasch and Rieff

write of the democratization of therapeutic culture through the personal growth and self-

help movement (Hall, Neitz, & Battani, 2003). As reported by Hall et al. (2003), Lasch

suggested that the therapeutic attitude is a "typical middle-class attempt to apply middle-

class problem-solving techniques (education, self-help) to a significant problem- the

collapse of personal life" (p. 27). Norton in 1998 suggested that this focus on the self is

now normative in the ordinary actions of the state (Hall et al, 2003). It seems likely that

healthcare, also, is dominated by the middle class focus on the self.

 Health care exists in a global society (Hall et al, 2003). Studies in international

industry have identified five main dimensions along which dominant value systems differ

(Hofstede, 2001). Hofstede (2001) suggests that dimensions "reflect basic problems that

any society has to cope with but which solutions differ" (p. xix). Defined in this way,

these dimensions can be applied to health care. These are (1) power distance, (2)

uncertainty avoidance, (3) individualism versus collectivism, (4) masculinity versus

femininity, and (5) long-term versus short-term orientation. As applied to health care,

power distance becomes the extent that professionals and clients expect power to be

distributed equally. The physician is at the top of the power hierarchy and the patient

commonly at the bottom in Western health care. Uncertainty avoidance is the extent to

which health care providers and clients feel comfortable in unstructured situations.

Traditional Western health care leaves little to be unstructured. Individualism versus

collectivism is the degree to which individuals identify as self or as part of a group.

Western health care commonly serves individuals rather than the collective. Masculinity

versus femininity is the distribution of emotional roles between the genders. 'Tough" is

associated with masculine and "tender" with feminine. Western health care traditionally

represents both of these through the physician (masculine) and nursing (feminine).

Lastly, time orientation ranges from long-term to short-term. This is the time that health

care providers and their clients are willing to wait for gratification of their health needs.

Traditional Western health care values promptness expressed in appointments for care.

Although these dimensions emerged from industry, they have yet to be studied in

medicine.
 35
Recommendations at the healthcare organization level aim to explain cultural

competency at the organizational level. The majority of recommendations from the

literature were from this category. The five recommendations noted here are represented

by multiple sources. Organizations are asked to develop programs designed to support

minority groups in navigating the health care system and to foster their increased

participation in treatment decisions (Betancourt, Green & Camillo, 2002; Institute of

Medicine, 2002a; Schuchman, 2004). Secondly, organizations ought to add data

collection and analysis procedures to include data on health care access and utilization

based on minority groupings. Ideally, these categories would be standardized in order to

merge with larger collections of data regarding health disparities (Betancourt, Green &

Castillo, 2002; Institute of Medicine, 2002a; CLAS standards 8, 9 & 10 Office of

Minority Health, 2001). Health organizations would then use this data in strategic

planning and designing quality improvement efforts (Betancourt, Green & Castillo, 2002;

Institute of Medicine, 2002a; Office of Minority Health, 2001). Fourth, health

organizations are called to train all staff in the provision of culturally competent care

(Costa-Alonso, Zafra-Mezcua, Botella-Rodriguez & Novalbos-Ruiz, 1998; Office of

Minority Health, 2001). Lastly, health organizations ought to enlist members of the

communities they wish to reach in solution-making processes (Betancourt, Green &

Camillo, 2002; Health Resources Services Administration, 2001; Office of Minority

Health, 2001). Each of these recommendations strives to increase the cultural

competence of a health care agency.

Lastly, educational recommendations prioritize inclusion of cultural competency

training into all entry-level health professions programs (American Medical Association,
 36
2004; Barrett, 2002; Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000; Cooper

& Powe, 2004; Institute of Medicine, 2002c; Office of Educational Research and ,

Improvement, 1992; Spector, 2000). Table 3 illustrates specific findings from the

literature. The majority of recommendations were for knowledge-based information on

the functions of culture, awareness of the culture of health care, information of health

care culture differences by groups, and the implications of stereotyping and biases.

General knowledge ought to also include information about cross cultural relations such

as Hofstede's (2001) five dimensions of cultural groups. Although not found in the

literature, it would seem that examples of various ethnic views of health, wellness,

sickness, death, ways of living, and caregiving would fit into this category. Skill-based

educational recommendations strongly centered on communication strategies to elicit and

impart health information. Concepts such as communication in high-context and low-

context cultures (Hall, 1976; 1984) could support this aspect of the curriculum. The

literature suggests a curriculum that facilitates individuals to gain self-awareness,

sensitivity, tolerance, and acceptance. Frequently, the use of learning activities that

involved cross-cultural experiences appeared. As curricula develop, it is recommended

that research occur to measure effectiveness of various learning strategies. As a standard

definition for cultural competence emerges, so too will those components considered to

be standard in all healthcare disciplines. The current lack of models explaining cultural

competence in all healthcare disciplines suggests the need for each healthcare discipline

to integrate core aspects of cultural competency into each discipline's processes of care.
 37
Summary

Much has been written about cultural competent health care since 1990 with a

proliferation of writing at the change of the millennium. Interest strengthened as health

disparities were found in non-majority people. This conflicts with the strong value of

equity and social justice that exists in America resulting in a call for improved healthcare

service to all people. Theories of varying stages of development have emerged, trying to

explain a healthcare system that can equitably serve all people. Eight models created to

explain cultural competency and their impact on health care were reviewed and critiqued.

One model explained cultural competency as the system level. Three models were found

to explain cultural competency in clinical encounters and two models were found to

explain educational instruction in cultural competency. Only one of the eight critiqued

models causally linked concepts to health disparities. At this time, empirical evidence

supports the use of communication strategies in maximizing shared understanding and

patient satisfaction with the clinical encounter. Although theorized, there is no empirical

evidence that associates gains in cultural competence with reduced health disparities,

increased efficiency of service, or increased quality of service. Following a review of the

recommendation made by various scholars regarding cultural competency, common

constructs believed to impact competency at the client-provider level, the organization

level, and the educational level were identified. Recommendations included maximizing

mutual understanding between client and healthcare provider through the use of

interpreters, increasing provider sensitivity, and increasing client understanding of the

health care system. Other recommendations included the incorporation of cultural

competency factors into strategic planning and organizational outcome evaluation plans.
 38
A final recommendation was to add training to staff and entry-level professional

programs in cultural competency. Lastly, recommendations for content in training

seminars and entry-level curricula were tallied in an effort to see trends and best

practices.

Healthcare systems have a social responsibility to provide suitable healthcare for

all people. Clearly, each process in a healthcare system needs to examine discipline-

specific practices in an effort to become more culturally competent. Research needs to

support the link between culturally competent health care practice and better health

outcomes. Theory development and subsequent research then needs to identify whether

or not a core set of culturally competent skills exists for all healthcare practitioners or if

culturally competent healthcare practice should be addressed from a discipline lens.

Models of culturally competent healthcare practice are few and stem from a narrow range

of discipline cultures. Disciplines need to individually and collectively grapple with the

meaning of culturally competent healthcare practice. As universal and discipline-specific

culturally competent practices are identified, educational systems must determine most

effective strategies for training both entering practitioners and existing health care

workers in culturally competent practices. Lastly, organizational, national, and

international awards must be present to continue the movement toward culturally

competent health care. Funding awards and political support must continue to maintain

the momentum towards reducing health disparities in America.

The following chapter outlines the research methodology proposed to study the

individual experience of receiving occupational therapy when the relationship is cross-

 39
cultural. This research will add the client's voice to the growing literature describing

culturally competent care.

Table 1

Comparison of Models of Cultural Competence in Health Care

Model Purpose Concepts and Level of Assumptions

Measurement
Purnell Model of To guide nursing Macro aspects: global 1. All health professions need information about cultural
Cultural assessment and society, community, diversity.
Competence care family, person, health 2. All health professions believe and share macro aspects.
(Pumell & 3. Cultures are different, not better.
Paulanka, 2003; Micro aspects: 12 domains 4. Core similarities exist and shared by all cultures.
Pumell, 2002) of culture, levels of 5. Differences exist within, between, and among cultures.
cultural consciousness 6. Culture changes slowly across time
7. Primary and secondary characteristics of culture
determine degree one varies from a dominant culture.
8. Client-healthcare provider co-participation will result
in more compliance and improved health outcomes.
9. Culture influences one's interpretation of and responses
to health care.
10. Individuals belong to several cultural groups.
11. Individual uniqueness and belonging to a cultural
group is valued.
12. Care providers require cultural-general and cultural-
specific information.
13. Learning about culture is an ongoing process.
14. Prejudices and biases can be minimized.
15. Effective health care reflects lifeways and worldviews
of diverse populations.
16. Differences in race and culture may require adaptations
to standard interventions
o
 Model Purpose Concepts and Level of Assumptions
Measurement
Culture Promote Culture as dynamic fluid, • Cultural competence is the "ability to attune to the
Emergent Model successful cross- contextual and emergent. individual while assessing the impact of community
(Bonder, Martin, cultural health influences" (Martin & Bonder, 2003, p. 93)
& Miracle, 2002; encounters using Intercultural intervention
Martin & inquiry-based • Intercultural intervention requires scientific-
Bonder, 2003) learning and Culturally competent mindedness, dynamic sizing skills, and culture
ethnographic practice requires specific expertise.
approach to care ethnographic skills, mutual
accommodation, and • Culture is learned, localized, patterned, evaluative,
vantage. Vantage includes and persistent but incorporates change.
ones position, values,
assumptions, focus, • Ethnographic skills required for culturally
chance, and worldview. competent practice include questioning, note-
taking, pattern recognition, imagining alternatives,
capacity for surprise, attending to the individual
and the group, and self-monitoring and self-
checking.

• Understanding of culture is seen in the evaluations

and
• interventions of clients.

• Client interaction should be with a "particular

mental orientation that acknowledges the
complexity, multiplicity, and uniqueness of
identities in interaction" (Martin & Bonder, 2003,
 p. 81).

Model Purpose Concepts and Level of Assumptions

Measurement
Betancourt, J.R., Determine key Cultural competence • Cultural competence is the "ability of systems to
Green, A.R. & components of provide care to patients with diverse values, beliefs
Camillo, J.E. cultural Organizational cultural and behaviors, including tailoring delivery to meet
(2002). Cultural competence and competence patients' social, cultural, and linguistic needs" (p.
competence in to develop V)
health care: recommendations Systematic cultural
emerging of increasing competence • Organizational cultural competence occurs when
frameworks and cultural minority leadership exists, minorities are hired and
practical competence in promoted, and minorities are represented on
approaches. clinical planning boards, quality assurance committees and
Field Report. interactions other key committees.
The
Commonwealth • Systematic cultural competence exists when
Fund. interpreters are used, literacy and materials target
www.cmwf.org. all cultural groups, staff undergo training in cultural
publication 576. competence, and health disparities are monitored.

• More culturally competent health care will result in

increased quality of care for all people.

• Increased quality of care is indicated by reduced

 health disparities.

Model Purpose Concepts and Level of Assumptions

Measurement
Brach, C. & Reduce racial Cultural pluralism • Use of interpreter services leads to improved
Fraser, I. (2000). and ethnic health Nine major cultural communication which leads to less risky behaviors and
disparities competency techniques: higher levels of health.
• Interpreter services • Recruitment and retention of minority staff leads to
recruitment increased trust and provision of appropriate services
• retention of minority leading to good health outcomes.
staff • Culturally competent health promotion leads to
• cultural competency changed patient behavior through increased trust and
training appropriate services and good health outcomes.
• use of community • Use of family or community members leads to
health workers increased trust and appropriate services and good
• culturally competent health outcomes.
health promotion using • Training programs leads to more differential
culture-specific epidemiology and treatment efficacy resulting in
attitudes and values changed provider behavior, provision of appropriate
including family services and good health outcomes.
members and/or • Immersion into another culture changes provider
community members behavior through increased trust and greater knowledge
in care resulting in appropriate services and good health
• immersion into another outcomes.
culture • Coordinating with traditional healers results in
• administrative and expanded understanding of client behavior leading to
organizational changed education of patients about treatment regimens
accommodations. and improved patient satisfaction.

Model Purpose Concepts and Level of
Measurement
Leininger, M. Document, Culture is the lifeways of
(1997) interpret, and an individual or group
explain multiple with reference to values,
factors beliefs, norms, patterns,
influencing care and practices that are
from a cultural learned, shared, and
holistic generationally transmitted.
perspective.
Culture care:
orientationally and
culturally derived
assistive, supportive, or
facilitative acts for another
which guides nursing
decisions and actions.
Culture care universality
and diversity: cultural
variabilities and
similarities in care
meanings, patterns, values,
beliefs, symbols, and
lifeways.
• Administrative and organizational accommodations
result in more understanding of client beliefs and
environment leading to improved education materials
and improved satisfaction.
Assumptions
• One learns transcultural care from working with people
of different cultures and by understanding one's own
cultural values, cultural classes, cultural pain and
imposition practices.
• Care differences and similarities exist.
• The worldview, social structure, religion, economics,
education, technology, politics, kinship, ethnohistory,
environmental context, language, and care practices
influence care meanings, expressions, patterns, values
and practices.
• Nurses make three major care decisions: culture care
preservation or maintenance, culture care
accommodation or negotiation, and culture care
repatterning or restructuring.
 Model Purpose Concepts and Level of Assumptions
Measurement
Wells, S. & Develop cultural Outcomes of culturally • Culturally competent practice is a structural ongoing
Black, R. (2000) competence of competent practice and lifelong process.
health care including understanding, • All people are multicultural.
practitioners with acceptance, knowledge, • Cultural competence is a professional and ethical
specific focus on and contracture relations obligation.
occupational when differences exist • Cultural competence enhances health care delivery.
therapists. between people.

Becoming culturally
competent requires self-
exploration and
awareness; knowledge of
others; and skills to
communicate integrate and
seek differences.

Stoy, D. (2000) Improve health Intercultural competency
education, public exists when practitioners
health practices, feel successful in their
and ultimately relations with others from
health status. different cultures; feelings
of respect and cooperation
are mutual; tasks are
efficient; and stress is
• Developing intercultural competence is an ongoing
process.
• Health educators need a working knowledge of culture
and its functions
• Learning about other cultures occurs best in the
following order: increase knowledge about cultures,
added awareness of the role of culture in interpersonal
 minimized. relations and accepting the emotional challenge to
confront own biases, weaknesses, and stress.

Model Purpose Concepts and Level of Assumptions

Measurement
Campinha- Provide higher Cultural competence is the • Five constructs are interdependent.
Bacote,J. (1999) quality nursing continual striving of the • Cultural competence requires gaining skills in all five
care health care provider to constructs.
work within the client's • Cultural competence is the intersection of all five
cultural context. constructs.
• As the area of intersection enlarges, health care
Five constructs: cultural providers more deeply internalize the constructs.
awareness cultural
knowledge, cultural
encounters, cultural skill,
and cultural desire. Each is
described in depth within
the model.

ON
 47
Table 2

Literature Recommendations at the Patient/Provider Level

Strength stability of patient-provider relationship Institute of Medicine, 2002a

Increase ratio of underrepresented racial and ethnic Betancourt, Green & Camillo,
minorities among health professionals 2002; Brach & Fraser, 2000;
Cooper & Powe, 2004; Institute of
Medicine, 2002a; Kamat, 1999;
Office of Minority Health, 2001;
Schuchman, 2004

Enhance patient-provider communication and trust Bonder, Martin & Miracle, 2002;
Cooper & Powe, 2004; Institute of
Medicine, 2002a

Include family or community members in health Brach & Fraser, 2000

visits

Use common language systems for communication Betancourt, Green & Camillo,
(interpreters when needed) 2002; Brach & Fraser, 2000; Health
Resources and Service
Administration, 2001; Institute of
Medicine, 2002a; Schuchman,
2004; Office of Minority Health,
2001

Give key health information reflective of Betancourt, Green & Camillo,

appropriate literacy levels, language proficiency, 2002; Health Resources and
and cultural norms for the population Services Administration, 2001;
Schuchman, 2004; Stoy, 2000

Use community health workers Brach & Fraser, 2000; Health

Resources and Services
Administration, 2001; Institute of
Medicine, 2002a

Coordinate with traditional healers Brach & Fraser, 2000

CLAS Standard 1: Health care organizations Office of Minority Health, 2001

should ensure that patients and consumers receive
from all staff members effective, understandable,
and respectful care that is provided in a manner
compatible with their cultural health beliefs and

practices and preferred language.
Increase provider respect, appreciation, and
sensitivity to a client's culture
Increase provider knowledge of the worldview of
different cultures
Increase provider self-awareness
48
Campinha-Bacote, 1999; Purnell,
2002; Health Resources and
Services Administration, 2001;
Jibaja, Sebastian, Kingery &
Holcomb, 2000; Schuchman, 2004;
Wells, 1993; Wells & Black, 2000;
Wittmann & Velde, 2002
Campinha-Bacote, 1999; Leavitt,
2001; Schuchman, 2004; Wells,
1993; Wells & Black, 2000
Leavitt, 2001; Wells, 1993; Wells
& Black, 2000
 49
Table 3

Literature Recommendations at the Health Care Organization Level

Avoid fragmentation of health plans along Institute of Medicine, 2002a

socioeconomic lines

Promote consistency and equity of care through Institute of Medicine, 2002a

evidence-based guidelines

Apply same managed care protections to enrollees Institute of Medicine, 2002a

of public HMO's as applied to private HMO
enrollees

Promote payment systems to ensure sufficient Institute of Medicine, 2002a

resources to serve minority patients and to limit
provider incentives

Use multidisciplinary treatment and preventive Institute of Medicine, 2002

care teams

CLAS Standard 5. provide to patients and Office of Minority Health, 2001

consumers in their preferred language both verbal
offers and written notices informing them of their
right to receive language assistance services

Implement patient education programs regarding Betancourt, Green & Camillo,

access to care, navigating the system, and to 2002; Schuchman, 2004; Institute
increase participation in treatment decisions of Medicine, 2002a

Culturally competent health promotion Brach & Fraser, 2000; Stoy, 2000

Collect and report data on health care access/ Betancourt, Green & Camillo,
utilization by patients' race, ethnicity, SES, 2002; Institute of Medicine, 2002a;
primary language (OMB categories using CLAS standards 8-10 Office of
subpopulation groups when possible) Minority Health, 2001

CLAS Standard 11. maintain a current Office of Minority Health, 2001

demographic, cultural, and epidemiological profile
of the community as well as a needs assessment to
accurately plan for and implement services that
respond to the cultural and linguistic
characteristics of the service
 50
Include measures of health disparities in Institute of Medicine, 2002a; CKAS
organization outcome measures standards 8 & 9 Office of Minority
Health, 2001

Include culturally and linguistically appropriate Betancourt, Green & Camillo, 2002
quality improvement survey methods

CLAS Standard 3. ensure that staff at all levels Office of Minority Health, 2001
and across all disciplines receive ongoing
education and training in culturally and
linguistically appropriate service delivery

Health care provider training on cultural Costa-Alonso, Zafra-Mezcua,

competence Botella-Rodriguez & Novalbos-
Ruiz, 1998

CLAS Standard 7. make available easily Office of Minority Health, 2001

understood patient-related materials and post
signage in the languages of the commonly
encountered groups and/or groups represented in
the service area

CLAS Standard 12. develop participatory, Office of Minority Health, 2001

collaborative partnerships with communities, and
utilize a variety of formal and informal
mechanisms to facilitate community and patient
and consumer involvement in designing and
implementing CLAS-related activities

Involve community representatives in strategic Betancourt et al, 2002; Health

planning and quality improvement meetings Resources and Services
Administration, 2001

CLAS Standard 13. ensure that conflict and Office of Minority Health, 2001
grievance resolution processes are culturally and
linguistically sensitive and capable of identifying,
preventing, and resolving cross-cultural conflicts
or complaints by patients and consumers

CLAS Standard 14. regularly make available to Office of Minority Health, 2001
the public information about their progress and
successful innovations in implementing the CLAS
standards and to provide public notice in their
communities about the availability of this
information

Table.4
Literature Recommendations at the Political/ Advocacy Level
Enforce civil rights laws and Title VI requirements
Integrate cross-cultural education into the training
of all current and future health professionals
Immersion into another culture
More research to identify sources of health
disparities and to assess intervention strategies
Research ethical issues and other barriers to
eliminate health disparities
Research critical incidents where the lack of
cultural competence resulted in medical error
Increase advancement opportunities for minority
health care leadership to increase diversity in
influential positions in academia, government, and
private industry
Federal and state support for interpreter services
Increase federal agency collaboration
51
Betancourt et al., 2002; Institute of
Medicine, 2002a
American Medical Association,
2004; Barrett, 2002; Betancourt et
al., 2002; Brach & Fraser, 2000;
Cooper & Powe, 2004; Institute of
Medicine, 2002a; Office of
Educational Research and
Improvement, 1992; Spector, 2000
Black, 2002; Brach & Fraser, 2000
Cooper & Powe, 2004; Institute of
Medicine, 2002a
Institute of Medicine, 2002a
Institute of Medicine, 2002a
Betancourt et al., 2002
Betancourt et al., 2002
Health Resource Services
Administration, 2001
 52
Table 5

Recommendations from the Literature for Health Professions Curricula

Knowledge
Students should:

understand their own culture. Wells & Black, 2000

affirm all cultures. Wells & Black, 2000

prepare for stress of intercultural experiences. Wells & Black, 2000

have a working knowledge of culture and its functions. Stoy, 2000

understand relations between culture and learning style. Stoy, 2000

understand cross-cultural differences in communication Hall, 1976; Stoy, 2000

patterns.

know the worldviews of different cultures including Campinha-Bacote, 1999;

attitude toward disability, family roles, work ethic, time Office of Educational Research
orientation, acculturation patterns, religion, role of and Improvement, 1992
"helper," attitude toward government funded services,
and knowledge of work.

understand states of cultural consciousness. Purnell & Paulanka, 1998

understand societal influences of oppression, Office of Educational Research

assimilation, poverty, educational opportunities, family & Improvement, 1992
structure, language differences, and the majority's
cultural values.

recognize the impact of ethnicity on normal Wells, 1993

developmental tasks.

understand racism. Baumberg, Pitts, & Maloney,

2002; Wells, 1993

understand cross-cultural caregiver and patient Baumberg et al., 2002

relationships.
 53
Skills

Students should:

Bamberg, Pitts, & Maloney,

have intercultural communication skills. 2002; Cooper & Powe, 2004;
Wells, 1993; Wells & Black,
2000

integrate cognitive, affective, and experiential Wells & Black, 2000

learning.

seek economic, political, and social aspirations of Wells & Black, 2000
pertinent cultural groups.

collect relevant cultural data about clients' health Campinha-Bacote, 1998; Leavitt,
history and health problems. 1001; Schuchman, 2004; Wells,
1993; Wells & Black, 2000

Attitudes

Student should:

be culturally aware. Campinha-Bacote, 1999; Office

of Educational Research &
Improvement, 1992; Wells &
Black, 2000

tolerate and accept. Wells & Black, 2000

have multicultural experiences. Barrett, 2002; Bamberg, Pitts &

Maloney, 2002; Campinha-
Bacote, 1999; Leavitt, 2001;
Wells & Black, 2000

confront biases, weakness, and stress regarding cross- Barrett, 2002; Bamberg, Pitts &
cultural encounters. Maloney, 2002; Cooper & Powe,
2004; Stoy, 2000

want to engage with different cultures. Campinha-Bacote, 1999

 54
CHAPTER 3

PHENOMENOLOGY

Overview of the Phenomenological Approach

This research represents a hermeneutic phenomenological approach to

understanding the experience of receiving occupational therapy when there are racial or

ethnic differences between client and therapist. Phenomenology was selected because of

its ability to provide an in-depth description of an everyday phenomenon such as

receiving therapy. Phenomenology is both a methodology and a philosophy (Merleau-

Ponty, 1962). As a philosophy it is transcendental, recognizing that there are many ways

experiences are understood in the world. As a methodology, phenomenology lets an

entity show itself from itself (Heidegger, 1962); it is the study of essences (Merleau-

Ponty, 1962) and the science of phenomena (van Manen, 1990). As stated by Heidegger

(1962), phenomenology means "to let that which shows itself be seen from itself in the

very way in which it shows itself from itself (p. 58). Lived experiences are transformed

into textual expressions as they systematically uncover and describe the internal

structures of lived experience (van Manen, 1990). As like all forms of qualitative

research it is based on the premise that there is more than one kind of knowledge about a

subject. It is describing the hidden essence of one's everyday lifeworld. Key concepts

derived from the methodology's epistemological and ontological underpinnings include

lifeworld, intentionality, essence, openness, reduction, objectivity, and validity.

Hermeneutics is the "bringing to understanding" of this text (van Manen, 1990).

Phenomenology, as implemented in this study, is heavily influenced by the work

of Amedeo Giorgi, who describes the phenomenological method as encompassing three

 55
interlocking steps: phenomenological reduction, description, and search for essences

(Giorgi, 2002). Hermeneutics, as implemented in this study, is heavily influenced by the

work of Max van Manen who describes a practical writing approach to the method of

hermeneutical phenomenology.

Purpose of Phenomenology

Qualitative research is based on the premise that knowledge includes subjective

knowledge experienced by people. It is experience-based and has as its purpose the

description and understanding of a person's subjective experiences through time and as

they relate to each other through relationships of meaning (Davidson, 2003). Martin

Heidegger (1962) suggests that the purpose of phenomenology is to explain "being itself

and to make the Being of entities stand out in full relief (p. 49). The word phenomenon

means "that which shows itself in itself (Heidegger, 1962, p. 51). Giorgi (1997)

describes the perspectives of experience as "presences" that "carry the index of reality

with them" (p. 236). The experience, or "presences," is analyzed in terms of its full range

of meaning held by the people with the experience (Giorgi, 1997). van Manen (1990)

describes the purpose of phenomenology a little differently. He states that

"phenomenology describes how one orients to lived experience" (p.4), an attempt to gain

a deeper understanding of our everyday experiences. The purpose of phenomenology as

applied to this study is to bring to consciousness those aspects of the occupational therapy

experience that are present when racial or ethnic differences exist between therapist and

client.
 56

Lifeworld

"Lifeworld" refers to Husserl's concept of "natural attitude" (Dahlberg, 2001; van

Manen, 1990). van Manen describes the lifeworld as "everyday experiences," the way

the world is experienced, or "lived experience;" it is the way the world is experienced

before it is reflected upon (van Manen, 1990). Giorgi (2002) describes the "ordinary

types of awareness" that occur in everyday life. These experiences that together form

everyday living are often tacit and hidden from our view. Heidegger (1962) states that

they may be disguised, undiscovered, or "buried over." He believes that when these

structures of "Being" are hidden they are the most dangerous and misleading when

understanding an experience is desired. Often it is these everyday experiences that are of

most interest to the phenomenological researcher.

The concept of "lifeworld" is critical to this research because of the central nature

played by hidden biases, presumptions, and prejudices in interactions between people, in

this case occupational therapists and their clients. Occupational therapy is a discipline

where its very practice is centered on the lifeworld of the people it serves, yet it seldom

acknowledges the lifeworld of the therapy experience itself. I am interested in the

lifeworld of the client when receiving therapy. The intersection of these two people

creates an experience designed to affect the everyday living of the client, yet seldom

described from the experience of the client. It is my assumption, as a researcher, that

clients who look different than their therapist by skin color, language, or other ethnicity

may experience the intersection from a different starting point.

 57
Intentionality

According to Husserl (1962), the most burning questions to man are "questions of

the meaning or meaninglessness of the whole of this human existence" (p. 6). These

questions abound in the everyday lives of people. Intentionality refers to the purposeful

and mindful selection of a phenomena to describe, in an effort to make the implicit

explicit. Giorgi (1997) elucidates Husserl's view of intentionality as the essential feature

of consciousness. He describes intentionality as that "act of consciousness" directed to

an object that transcends the consciousness (Giorgi, 1987). Giorgi further explains this as

a "state of desire" (p. 237). It is this relationship of directed consciousness that is

believed to describe how people give meaning to their everyday experiences that make up

their lives. The phenomenological researcher, then, seeks to understand how a person's

consciousness attends to subject of experience in an effort to understand it as meant to

that person (Dahlberg, 2001). It is a "turning to" the subject to be studied (van Manen,

1990, p. 31). Intentionality is also visible in the interaction between researcher and

participant, a being fully present and attentive to the description of the phenomena. In

this research I wanted to understand the meaning held by clients regarding the experience

of receiving occupational therapy. I wanted to learn what facets of the experience were

held in the consciousness of past receivers of occupational therapy. I wanted to enter

their everyday lives at the time they received therapy in a "looking back" to the meaning

of the experience. I wanted to understand the experience when there was cultural

difference between the researcher and the client.

 58
Essence

The phenomenological researcher seeks the essence of the phenomenon as

experienced by the other. The researcher does not seek facts about the experience; rather,

the researcher seeks that which brings meaning to the individual from the experience. It

is that fundamental meaning that forms an internal meaning structure. Heidegger (1962)

writes of the character of the description itself, or it's "thinghood," the "scientific

definiteness as we encounter it phenomenally" (p. 59). Giorgi (1992) describes essence

as the constant identity that holds the meaning together. He supports the use of "free

imaginative variation" to elucidate key meanings as originally described by Husserl.

Free imaginative variation requires selection by the researcher of that facet that can

undergo no more variation and still maintain meaning (Giorgi, 1997). Giorgi illustrates

free imaginative variation with the example of a chair. A chair covered in soft upholstery

and a chair made of wood and placed in the lawn are still both chairs. But if there is no

seat, it is no longer a chair. Therefore, the presence of a seat is an essence to being a

chair. In this way it is contextualized and depends upon the unique perspective of the

researcher.

I used free imaginative variation to identify essential meanings within interview

text and again as the structure unfolded regarding the phenomena of receiving

occupational therapy when cultural disparity exists between client and therapist.

Openness

Openness refers to the stance of receptivity held by the researcher. Heidegger

describes this as "to let that which shows itself be seen from itself (p. 58). This is

opposed to the natural attitude where things are taken for granted with structure of
 59
meaning often provided by presuppositions and biases (Giorgi, 1997). Although most

difficult, the stance of openness is required for the researcher to hear the description of

meaning without alteration by the researcher's biases and prior assumptions. "Openness"

has also been described as a state of mind where the researcher is sensitive to another's

experience (Dahlberg, 2001). The "phenomenological reduction" as described by Giorgi

requires a "stepping back" to see the presence.

The "phenomenological reduction" is dependent upon the researcher's critical

examination of his or her prior experience with the phenomenon while at the same time

finding a place of openness to permit the phenomena to show itself or appear. It is "the

capacity to be surprised and sensitive to the unpredictable" (Dahlberg, 2001). One way

to encourage phenomenological reduction is through the use of bracketing. Bracketing is

the putting aside of past knowledge of the phenomenon in order to be fully present and

enable a description that is as close to how a phenomenon was experienced as possible.

It is a break from the assumption of objectivity of the researcher, an attempt to make the

biases, prejudices, and presuppositions explicit so as to be able to encounter the

description with new attention (Giorgi, 1997).

The Process of Bracketing

The scientific phenomenological researcher must decide whether to bracket biases

and presuppositions inherent from their stance within a discipline prior to analyzing their

description of a phenomenon (Giorgi, 1997). This stance within a discipline or scientific

view is built, in part, from epistemological assumptions that guide questions to be

researched and include those assumptions about how the research ought to be conducted

(Dahlberg, 2001). The researcher may attempt to bracket those pre-assumptions

 60
associated with the phenomena that are a result of a discipline lens in order to achieve a

full phenomenological reduction. However, at times the researcher may choose to use his

or her discipline lens with the aim of recognizing scientific essences that are dependent

upon the unique perspective of the discipline (Giorgi, 1997).

Qualifications of the researcher. Bracketing was a critical aspect to this research

because as an occupational therapist and a researcher, I hold all those pre-assumptions

and biases within the lifeworld of research and within the lifeworld of occupational

therapy. I spend most of my days in the lifeworld of occupational therapy and have

habituated ways of thinking associated with that discipline. Twenty years of clinical

practice and over 10 years .talking and writing about occupational therapy to students

have reinforced the values and beliefs of rehabilitative health care. Although my

background as an occupational therapist strengthened my ability to understand and

sympathize with the medical condition and the process of therapy, I feared that it could

prevent me from opening myself to a new way of viewing the phenomenon.

I intentionally embraced a scientific attitude throughout this study. When in the

scientific attitude, I bracketed motives connected to my language and beliefs about best-

practice research. At the same time I bracketed motives connected to my language of

occupational therapy. When I was in the natural attitude of everyday living I was

unaware of the effects these biases had on my ability to recognize descriptions of the

phenomenon. And when I was in a state of openness I was most inquisitive about all

aspects of the experience.

Biases and pre-understandingsL Because I am an occupational therapist and have

held this in my identity for a much longer time than that of a researcher, it is more natural
 61

for me to carry pre-understandings associated with that attitude. It was necessary for me

to set aside my prior assumptions that are a result of my experiences as a researcher, an

occupational therapy practitioner, and an occupational therapy educator. These biases

included my understandings of non-white patients and clients in the health care system,

my understandings as a person used to working within the medical model, and my

understandings as a patient and client myself. It was necessary for me to list these pre-

understandings before starting the research and to frequently revise them throughout the

research process. I found the process of identifying my pre-understandings to be an

iterative one. My own prior assumptions and biases frequently emerged during

interviews and analysis, requiring vigilance of my part to remain open to the meanings

hidden in the text. I struggled to achieve a stance of openness and a phenomenological

reduction to the scientific attitude prior to each interview, but yet repeatedly found myself

responding with a follow-up question in the discipline attitude. Later, I tried to bracket

this by intentionally analyzing the text in both the natural attitude and the discipline

attitude.

As an experienced occupational therapy practitioner and a novice researcher, I

brought certain assumptions for the outcomes of this research. By making these

assumptions explicit, I attempted to "bracket" any pre-understandings that would unfairly

influence my interpretation of text. In accord with the study design, I would be

interviewing past recipients of occupational therapy who were racially or ethnically

different from me (see Participants). I suspected that many participants would more

fully share information in the second interview rather than the first interview because I

represent a white, middle- class position of privilege and status. I believed they would
 62
feel more comfortable with me during our second meeting. At the same time, I suspected

that individuals from diverse backgrounds would share with me because I am a middle-

aged woman in a traditionally caring role. I believed that individuals would share more

about their experience if they valued the purpose of the interview and readily saw how it

might benefit themselves and others in receiving therapy. I believed that open-ended

interviews would work with people of limited English fluency. I also believed that open-

ended interviews could include the past client and the client's family, spouse, or partner if

necessary. I believed that occupational therapy operates from a heterosexual, white,

middle-class lifeworld that frequently differs from that of their clients. This vantage

values independence, hard work, and a belief in mastery over the environment. This

vantage also supports specific gender roles. I believed that the effect of these

assumptions often leads to missed opportunities in therapy. I hoped that clients would

tell me about times they felt connected to their therapist and the times when they did not.

I hoped that clients would give voice to the many dimensions of the therapy experience.

I hoped that clients would give clues to what therapists can do to maximize meaning and

function in the lives of all people, and most importantly, those clients who perceived

themselves to be socioculturally different from their therapist.

Despite my attempts to bring to consciousness my preconceptions and

expectations, I encountered my own preconceptions of the phenomena particularly during

those first interviews. I realized that I thought I would hear emotional stories of racism

and discrimination, stories of feeling unheard, discounted, and unconnected from the

therapy process. When I did not hear these stories I feared there was no phenomenon to

study. Then I worried whether I was "leading the witness" in asking questions that would
 63
direct these individuals towards a phenomenon that I wanted to see. I came to realize the

importance of corralling my biases to allow the phenomenon to emerge.

Bracketing interview^ At this time I arranged for a researcher trained in

phenomenology to interview me about the phenomenon. I wanted to systematically

expose my biases and assumptions thereby permitting the structure of the phenomenon to

emerge. This process exposed my strong beliefs about how therapists and clients

connect. I believed that therapists and clients connected the least when there were

obvious differences such as skin color or differing primary languages. I also believed

that "connecting" in therapy was good and that it is this connection that leads to a deeper

and more transformative therapy experience for the client. My beliefs were strong,

requiring conscious and frequent intention to bracket while I grouped themes from

individual interviews in the emergence of the phenomenon's structure. I now realize that

this type of research requires that I attend to my intuitions, questioning myself every time

I interact with the text. In an almost ritualistic manner I now consciously and

intentionally focus on the phenomenon while asking myself to predict what I expect to

happen.

Defensibility of Knowledge Claims

Phenomenological thought is based on conscious intentionality, consciousness

that is ideational rather than empirical, and a "philosophy of intuition" (Giorgi, 1987).

Phenomenological reduction, a basic assumption of phenomenology, occurs when the

researcher makes non-influential those past biases and beliefs about the phenomenon and

refrains from making existential claims about the phenomenon (Giorgi, 1987). The

phenomenological reduction provides the openness required to search for the most
invariant descriptions of a phenomenon within a particular context (Giorgi, 1987). In this

way phenomenological results are always contextual and never universal (Dahlberg,

2001). Dahlberg explains this process using Gadmer's "hermeneutic spiral" whereby the

researcher or interpreter translates meaning within the context of dialogue to another

context (p. 229). According to Gadamer (1995) hermeneutic interpretation involves

being open to what the text is saying followed by an act of expressing what is said in a

way that can be heard in the new context of time and place. In my case, I intentionally

sought and opened myself to description by individuals of varying cultural backgrounds

seeking to understand the experience receiving occupational therapy. Through analysis

and interpretation, I translated meanings into scientific and discipline language so that

others may appreciate and be more sensitive to clients in this situation. This type of

generalization leads not to a universal answer to the question, "why," but rather to a

deeper understanding of "how" a person experiences this phenomena.

Although this research is in essence subjective, "objectivity" is taken to mean the

thoroughness of reasoning present in a research study. It is the minimization of the

researcher's bias to foster solid description and analysis. Dahlberg (2001) cites Linstrom

in listing three characteristics of objectivity: the presence of intellectual honesty, the

thoroughness of reasoning in accord with the conditions and consequences, and last, the

prohibition of favoring the researcher's view through actions such as skewed sampling

and omission of negative evidence. In phenomenology, the need for objectivity is

satisfied by the researcher's stance of openness and use of the phenomenological

reduction (Dahlberg, 2001; Giorgi, 1997). The researcher must repeatedly strive to be

open to a new perspective and new knowledge of the subject (Dahlberg, 2001). The
 65
researcher does this by bracketing those presuppositions regarding the subject of interest,

in my case that of receiving occupational therapy when you are racially or ethnically

different from your therapist. Although I had privately journaled my presuppositions as

an occupational therapist, I initially only disclosed my researcher role to the individuals

being interviewed. I realized during my second interview that having only disclosed my

role as a researcher, I was being perceived as an evaluator. Past recipients of

occupational therapy told me things with the expectation that I would bring this

information back to the facility where they received their care. My fear was that this

would affect the objectivity of the research, that rather than hearing a detailed

description, I would hear what they thought I wanted to hear. I could feel my internal

tension to analyze their responses as a therapist rather than only as a researcher. As a

result, by the end of my second interview I disclosed my role as an occupational therapist

and then asked if there was anything else they wanted to add. I seemed to move from a

possible outsider completing an evaluation to that of an inside collaborator of how to

make things better for people who receive occupational therapy. My experience

illustrated the tensions discussed by Dahlberg as an example of how openness as a

researcher could influence the objectivity of the research.

The validity or truth of the research holds if conclusions can be trusted and used

as a basis for actions and/or policy decisions (Polkinghorne, 1989). The researcher must

display evidence to justify the knowledge claims that are made (Giorgi, 1987). Veracity

is achieved by relating the process of analysis, clarifying how text was transformed into

essences, and describing the structure of the phenomenon, which creates the basis for

interpretation. Validity in the phenomenological sense is obtained when the essential

 66
description adequately describes the general essence revealed to the consciousness of the

researcher (Giorgi, 1987). It is important that the researcher be explicit in the

intentionality used to obtain the text, to transcribe the interviews into text, and to select

the dialogue that stands out (Dahlberg, 2001). My consistent use of the

phenomenological reduction, monitored through the use of free imaginative variation

with the corresponding translation to the language of occupational therapy, greatly

contributed to the authenticity of this method. The act of translation identified biases that

blocked recognition of a meaning unit. It was clear to me that my prior assumptions as

an occupational therapist required more bracketing than those of a scientist. I can only

assume that is because of my newness to the role.

Merleau-Ponty (1995) brings to awareness the importance of a reflective pause as

a time to step back and reflect in the search for accurate descriptions of experience.

"Reflection," he says, "cannot be thorough-going, or bring a complete elucidation of its

object, if it does not arrive at awareness of itself as well as of its results" (p. 72). He

writes of a "reflective attitude" so one can "reflect on this reflection" (p. 72). In this

research I conducted second interviews. This permitted me time to reflect on the

interview, analyze the text, reflect again on the whole interview, reflect on my ability to

maintain an open stance throughout the interview, and to reflect on my analysis. Second

interviews were characterized by a sense of friends coming together to share a problem.

Having analyzed each first interview prior to each second interview, I was able to use the

participant's own words to further probe for clarification of meaning. I asked participants

whether I fully captured their voice or if they heard more of mine.

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Phenomenological Method

Phenomenology seeks greater understanding of the meaning of an experience as it

is experienced. Giorgi (2002) describes three steps used to discover the structure of the

experience. These steps include the phenomenological reduction, the description, and the

search for essences. Georgi's approach is more descriptive, seeking clear description of

the experience, van Manen (1990) emphasized the importance of "turning to the nature

of lived experience" (p.31), and hermeneutic phenomenological reflection and writing in

addition to the investigation or seeking of the description. This study draws heavily from

methods presented by Giorgi (2002), van Manen (1990) and Dahlberg (2001).

Participants

As a researcher, I oriented to a phenomenon of much interest to me, that of

receiving occupational therapy when there is a great cultural difference between the

therapist and the client. This required turning to people who have experienced

occupational therapy and who perceived themselves as differing from their therapist. I

chose to include individuals who differed from their therapist by race or ethnicity so that

the difference was clear to both people interacting in the therapy relationship. I limited

the selection of participants to those who spoke English sufficiently well to permit

interviewing without a translator. As a novice researcher, I wanted to remain as close to

the phenomenon of interest as possible. To minimize potential forces of coercion, I

selected participants who were adults and who had already completed the therapy

process. This meant that participants would be reflecting on a time in their recent history,

the time when they received occupational therapy.

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Initially I looked to a therapy system within a local large health care system to

identify suitable participants. Therapists were asked to identify possible participants

from their recently discharged caseloads. These individuals would then be contacted by a

representative of the health care facility asking if they would be willing to participate in

this study. It surprised me that many therapists were unable to identify any recent

discharged clients for possible participation in this study despite frequent requests over a

one year time period. After receiving approval from the University of Minnesota's

Institutional Review Board (IRB), I continued purposefully seeking illuminative cases

through agencies and groups who serve people with disabilities and those private therapy

clinics who also provide occupational therapy services. I contacted many professionals

who serve people with disabilities including all fieldwork supervisors of students

receiving professional training in occupational therapy from the University of Minnesota,

and other campus agencies serving students and communities of people with disabilities.

The duration of time since receiving occupational therapy intervention was also increased

from 1 year to 3 years.

I was contacted by five individuals seeking participation in the study. All five

met my study criteria. All individuals varied from their therapist by race and ethnicity

and in all cases the therapist was white. Two participants self-identified as African

American female, one as African American male, one as Native American male, and one

as African immigrant female. Letters and telephone scripts for recruitment and the final

consent form are provided in Appendix A.

A gift certificate to a local department store was given to each participant

following each of two interviews ($20 after the first and $30 after the second interview).
 69
Although possibly a motivating factor for participation, the intent of the gift certificates

was to compensate for their time and trouble.

Text

In phenomenological research, the researcher "borrows" the experience of other

people and their reflections of their experience to better understand the significance of the

human experience (van Manen, 1990). van Manen goes on to describe two purposes of

text collection: the first mainly to gather information and the second to reflect on the

experience. I used interviews to obtain text for both purposes. I selected interviews as

the best vehicle to obtain this text because I assumed this would be more readily accepted

by possible participants and because I wanted to experience the nonverbal side of

communication. My first interviews with individuals hoped to elicit experiential

narrative material to provide me a deeper understanding of the experience of receiving

occupational therapy when a racial or ethnic difference existed with the therapist. These

interviews occurred July through November, 2006. After an initial analysis of each

interview, I then interviewed each individual twice with the goal of developing a

conversational dialogue about the meaning of the experience. The second interview

allowed me to clarify aspects of the description heard from the first interview. Weber

(2002) defines a "good" interview as one that is a "conversation between interviewer and

participant that evokes the participant's lived experience, seeking shared understanding"

(p. 68). She goes on to say that the best moments of an interview occur when the

"interviewer and the participant are both caught up in the phenomenon being discussed,

when both are trying and wanting to understand" (p. 69). I more often remember these

moments of intersubjective dialogue during the second interviews. These were the
 70
moments when both the participant and I had a sense of profound agreement. These

second interviews occurred December, 2006 through February, 2007. All interviews

occurred at a time and place selected by the participant. In most cases interviews

occurred in restaurants, coffee shops, or other public places. One participant requested

interviews to occur in her home. All interviews were approximately 1 hour in length. All

interviews were recorded and transcribed to create the text for this study. I both

interviewed and transcribed all the interviews for this study and did so wanting to

maintain my closeness to the phenomenon. Dahlberg (2001) states that the researcher

ought to always be attuned to "expressions of emotion or uncertainty, pauses and

hesitations, and other expressive qualities" giving "clues" to the meaning of the

experience (p. 189). Transcribing my own interviews permitted the insertion of notes,

new awareness, and nonverbal cues remembered while again hearing the actual

interview.

At the beginning of each interview I informed each participant of his or her right

to refuse participation, the importance of maintaining confidentiality of any private

information, and a reminder of how this research may be used. I tried to remain sensitive

to the possibility that people may disclose more than intended due to the openness and

intimacy of the interview itself (Kvale, 1006). I wanted participants to know that they

could retract anything they said even well after the interview was concluded.

The interview format was influenced by the work of Kvale (1996), who describes

the interview as a "specific form of conversation" (p. 19). He states that a research

interview "is characterized by a methodological awareness of question forms, a focus on

the dynamics of interaction between interviewer and interviewee, and a critical attention
 71
to what is said" (p. 20). I opened each interview with the question, "What is it like to

receive occupational therapy when your therapist is racially or ethnically different from

yourself?" Dahlberg (2001) suggests that the opening question should be a balance

between structure and openness. I then asked additional questions to clarify, redirect, or

further explore something stated by the participant. For example, common probing

questions were "Can you tell me more about that? How was that for you? Can you give

me an example?" I refrained from countering statements or proposing alternative ways

of thinking about a point. In this way I used an interview process that came close to

everyday conversation, but when conversation wandered from the phenomenon I

purposefully redirected the question. When the conversation seemed more factually

descriptive rather than meaningfully descriptive, I asked the question, "Can you tell me

of a time when you received health care that was not culturally competent?"

Second interviews were characterized by a return to text of the first interview.

After again opening the interview with, "Please tell me about the experience of the

receiving occupational therapy when the therapist is racially or ethnically different from

you," I then used parts of the first interview to probe deeper into the phenomenon. For

example, one participant spoke at length in his first interview about the importance of

feeling comfortable. Then later in the first interview he mentioned feeling "almost at

home." I did not probe at the time, but in the second interview asked, "At one point you

said that [being at therapy] made me feel more at home [reading from the first interview].

So, feeling at home—can you tell me more about that?" The participant then explained

with a fuller description:

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Yes. Comfort with me, comfort and feeling at home, they ride side-by-side. You

know, you kind of want to come home and put your bare feet down in the carpet,

and, you know, feel relaxed.

I found this to be an effective way of deepening both my understanding and prompting

reflection regarding statement's significance.

After some of the interviews, I wrote my reflections about the interview itself, my

attempts to bracket my pre-understandings and anything that seemed unique about the

experience of receiving occupational therapy. I got an ongoing reflection journal where I

noted thoughts as they came to mind, reactions to the quality of the text, statements that

stood out, and reflections that I had about possible meanings.

Phenomenological Text Analysis

My analysis of the text was heavily influenced by the work of Giorgi (1997), who

views text analysis as an act of description. He defines this descriptive task as

communicating to others the "objects of consciousness to which one is present, precisely

as they are presented" (p. 241). From this perspective all text analysis requires the

vantage of the phenomenological reduction while remaining close to the phenomenon of

interest. He also supports use of phenomenological reduction to translate meaning units

into discipline specific language.

Transcription. According to Giorgi (1997), the first step in analysis is that of

holistically reading the verbatim transcription of the interviews. It is the beginning of the

"whole to parts to whole" movement characteristic of phenomenology (Dahlberg, 2001;

van Manen, 1990). Dahlberg describes this as a "familiarizing phase," a time of

"opening up her/his mind to the data and the meanings that are there" (p. 187). This is a
 73
time of "immediateness," a time of curiosity and seeking surprise by the text. This step is

believed to be important in the bracketing of pre-understandings that may inhibit further

analysis of the text. At the beginning of the analysis I read the entire text several times

and wrote a summary of the whole. This served to familiarize me to the text and helped

to develop an "openness" to its meanings.

Meaning Units. Giorgi (2002) emphasizes the importance of dividing the data

into parts for the purpose of meaning discrimination. This presupposes a disciplinary

perspective that is sensitive to the phenomenon under investigation. "Meaning units" are

identified at points in the text where meaning transitions from one core meaning to

another. According to Giorgi, the end of this step occurs when a series of meaning units

are identified but have not yet undergone translation to the scientific language. Reading

the text at this time focuses on understanding the meaning of every unit or changes of

idea within the text.

The identification of meaning units is a dialogical process between the text and

the researcher. This is the point referred to by Gadamer (996) when he states:

A historical text is made the object of interpretation means that it puts a question

to the interpreter. Thus interpretation always involves a relation to the question

that is asked of the interpreter. To understand a text means to understand this

question (p. 369-370).

Dahlberg (2001) describes this step as conversing with the text, when it "moves from

being an object for the researcher to becoming a subject that is ready for cross-

examination" (p. 188). This is the time when the researcher questions the text, asking

what is said, how it is said, and what does what is said mean. Questions asked by the
 74
researcher of the text are aimed at the goal of the study, in this case, that of receiving

occupational therapy when cultural differences exist. Over repeated readings, a pattern of

understanding emerges (Dahlberg, 2001). Examples of questions used in the researcher-

text dialogue in this study included: How does the participant describe cultural

competency? Is more than one expression of the experience shared by the participant?

What does receiving occupational therapy mean to the participant? Does a particular

phrase stand out as expressing the experience? Are there conflicting statements? What

statements seem to agree with each other?

This step seems to be consistent with the beginning of hermeneutical

phenomenological reflection as described by van Manen (1990) when he writes of

"meaning units, structures of meaning, or themes" (p. 78). He describes a "theme" as an

"element (motif, formula or device) which occurs frequently in the text" (p. 78). He

states, '"Theme Analysis' refers then to the process of recovering the theme or themes

that are embodied and dramatized in the evolving meanings and imagery of the work" (p.

78). According to van Manen (1990) themes are the focus of meaning, a simplification,

intransitive and moving, and a form to capture understanding of the phenomenon.

During this phase of analysis I read each text several times, seeking the meaning

units within each interview. For example, one meaning unit depicting the experience of

therapy in this study referred to feeling welcomed. The following quotation illustrates

this meaning unit or theme.

.. .it was very warm and welcoming and I just remember every time; I remember

the first few days that I came there I was looking like, "Is this for real? Are these

people for real? Because I wasn't used to that.. .(Smiley).

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This quotation also illustrates the meaning unit of noticing the first day. The question

this text asked of me is if the meaning is about feeling comfortable or if it is about getting

to know the therapists on the first day.

Another early theme that emerged from the same interview and later recognized

in other interviews was that of see me like anybody else. This same individual later

stated, "I noticed that everyone was treated the same, equally. And, uh, that made me

feel more at home, too, to be able to see other people from different countries to be

treated the same way as I was".

At this point the meaning units were less refined than what later emerged from the

text. They were more vague and I was unsure of their relationship to the essential

structure of the meaning of the text. The meaning units are apparent when meaning shifts

in the text. The following quotation illustrates shifts in meaning from, feeling welcomed

and comfortable to meeting others to feeling relief to feeling comfortable. Shifts in

meaning are marked with a [/] symbol.

They made me feel comfortable from the start. When I first walked into the

door, I noticed that right off the bat. I was greeted, you know, it wasn't like I

just walked in and no one really paid me much attention. They asked me,

"Hey, how you doing?" "I'm such and such", they all introduced themselves. [/] I

actually, I think I initially had more of a introduction to my doctor which was Dr.

A. at the time, and still at this time. I don't have any more therapy at this time,

but, uh, and that it was Dr. A. He was very pleasant with me. I don't remember

all the staffs names because I'm really not really good with names as much as I

am with numbers. But I do remember a few people, uh, that I did talk with on
 76
that day. I spoke with a gentleman named M. I think, M. was the first one that

initially started my therapy. [/] And once again he let me know—he really

relaxed me, you know that it's not anything painful or anything that you have to

really worry about. Like if I did feel any pain, to let him know down the road. [/]

But the thing that sticks out in my head most of all was they were very quick to

make you feel comfortable about just joking around and making a comfortable

atmosphere for me to deal with which I felt was real nice because I never had

therapy before..." (Smiley)

The above quotation illustrates four shifts in meaning. At this stage of analysis I

identified shifts in meaning and marked each with a word, phrase, or statement that

seemed to capture the essence of the meaning. During this stage of analysis I highlighted

text within each interview that identified central aspects of meaning regarding receiving

occupational therapy. Bolded sentence segments identify these central aspects of

meaning.

During this stage of analysis, emerging meanings were marked in the right margin

of each page. For example, feeling relaxed means knowing I won't feel pain was noted in

the right margin in response to a reading of the "relaxed me" meaning unit above. This

was further explained by another participant who stated:

It's like, OK, when you go in, when you first go, like when I first went in I was

like nervous and everything. Like are they going to torture me and all this and

that and get mad if I can't do it and stuff like that? But it wasn't like that. They

were so nice and sympathetic with me and stuff (Missy).

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Two questions that I used to determine whether meaning units were essential to

the meaning of the occupational therapy experience when racial or ethnic differences

exist between the client and participant included the following: Does this refer to the

experience of receiving occupational therapy? Does this refer to the experience of when

there are differences in cultural background? van Manen (1990) describes four

fundamental existential themes to guide the reflection of lifeworlds. I used these themes

to question the essentialness of each meaning unit by asking: is this part related to the

lived body, space, time, or relation? These existential life worlds will be applied to this

study when I discuss expressing the phenomenon.

Meaning units from the first interview became the basis for the second interview

with each participant. For example, when the same participant was asked to describe

more about feeling comfortable he stated:

.. ..They took the time to make me comfortable. Ah, they took the time to make

me feel at home so now I feel like I'm at home. There's no longer a selfish, a

feeling of selfishness anymore, ah, you know, like some people, they think

individually... (Smiley).

Transforming into disciplinary language. Giorgi (1997) writes of the need to

examine, probe and redescribe meaning units into disciplinary language. Participants

describe their experience in the natural attitude, but I will use this text in my scientific

attitude of a scholar and occupational therapist. In this step of analysis I transformed the

text of the participants to be in accord with my disciplinary intuition. As stated by

Dahlberg (2001), this is the point where the content obtained from free imaginative

variation is expressed from a scientific perspective with a focus only on meanings. In

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this way a discipline perspective was adopted in a relatively open form to permit

intuitively based identification of meaning units.

It was at this stage of analysis where I consciously renamed each meaning unit in

accord with my stance as a researcher and an occupational therapist. It was here that I

most recognized discipline bias that was a result of my pre-understandings. In some

cases, the label of the meaning unit from the natural attitude and the discipline attitude

were similar, but in others, I recognized a clear translation of thought. This is illustrated

in the following quote when the participant is explaining what it is like to "train" the

therapist in how to work with him.

See, that's how I do things. If you're patient around me, I know what it means to

be patient. But if you're all fidgety with me, trying to hurry up and get things

done, then I channel, I tend to, people's energy are like super glue to me. If

somebody's really fast and not focused then I'm not going to be focused.

I had noted the essential meaning in the natural attitude to be "People's energy are like

super glue to me and affect me," but I translated this theme to the occupational therapy

language of "client performance is impacted by therapist arousal level."

Using my discipline language permitted me to group like meanings towards an

understanding for occupational therapy. Dahlberg (2001) describes this process of

grouping emerging and transformed meanings as having "the potential of developing a

meaningful pattern, like a beautiful and harmonic picture, as its goal" (p. 191). The

process of translating into my discipline language caused reflective pause in the process

of using free imaginative variation. Free imaginative variation is a process of seeking

possible alternative meanings by systematically varying components of the meaning unit

 79
until that which is essential remains (Giorgi, 1997). It is only after this essential part is

disclosed that one translates a meaning unit into the discipline language. This is what

grounds the theme to the natural attitude of the participant. I used free imaginative

variations when I dialogued with the text asking the text the following questions: What

happens if I remove this clause? Could this phrase mean something else? If I substitute a

word, does the core meaning change? This method separated essential meanings from

incidental meanings. In the example above, I asked whether the meaning was about

feeling patient, channeling, or being focused. After removing these parts, I determined

that the essential meaning was about channeling energy from the therapist or being

affected by people's energy.

Expressing the Structure of the Phenomenon

Giorgi (1997) describes this step in phenomenological analysis as describing the

"essential structure of the concrete, lived experience from the perspective of the

discipline" (pg. 247). This is the point of synthesis across essential meanings of multiple

texts. Giorgi reminds the phenomenological researcher not to force data into a single

structure, but to write as many structures as are required in the synthesizing of themes or

meaning units. He describes these structures being more than the parts of the structure,

but also the interrelationships between the parts. Once the structure has been determined,

he suggests returning to the raw text and identifying those "clusters of variation" that

"coheres or converges" to the structure (p. 248). The goal, as stated by Giorgi, is "not

just the 'essential structure' but rather the structure in relation to the varied

manifestations of an essential identify" (p. 249).

 80
van Manen (1990) seems to identify the essential structure more broadly as that of

the "human lifeworld" (p. 101). He suggests four fundamental existential themes: lived

space, lived body, lived time, and lived human relation. He suggests using these

lifeworld existentials to pose, reflect and write about the structure of the phenomenon.

They are guides to reflection and, as such, can be used to guide reflection at the time of

text analysis or text interpretation.

Lived space refers to how humans experience the space around them. The

experience of receiving therapy brought to mind thoughts of lived space for participants

in this study. For example one participant stated, "I noticed that everyone was treated the

same, equally. And uh, that made me feel more at home, too, to be able to see other

people from different countries to be treated the same way as I was." Another participant

stated, "I felt like I was at home. Had a personal therapist come to my house takin' care

of me. Boy, it was nice. It was very nice." For these participants, there was a level of

comfortableness in that they associated the therapy place with a place where they could

be comfortable themselves.

Lived body refers to how the body experiences the phenomenon. In this case I

attended to those statements describing how participants experienced occupational

therapy in their body. One example of how a participant experienced the phenomenon in

their body follows.

Cause there were days that I came in, cause at the time I was in therapy I was still

at that job, where I got hurt. And I, those days when I came in I was grumpy. I

remember. Grumpy. And I apologize in any way if I ever came off grumpy to

them because I didn't mean to. But by the time I left there, I was laughing and
 81
joking and smiling. And I never really paid it much attention in the beginning

but, you know, before my therapy was over I started really looking, reflecting

back on everything and I was like, you know what they really, they really boosted

my sprits a lot. I mean I ended up not only feeling better physically, but mentally,

spiritually. I just felt, you know, uplifted. I remember that. I remember that

like it was yesterday (Smiley).

Lived time is subjective, that which speeds up or slows down despite the pace of

clock-time (van Manen, 1990). I wanted to know if participants positively or negatively

experienced time. Much of health care is based in timed units and I wanted to learn if

this was experienced differently by therapists and clients. I was also interested in the

experience of past, present, and future in a client's life. Typically people come to therapy

to change something in their present for the hope of something better in the future. I

wanted to learn about this aspect of the experience. For example, one participant stated,

"one time one minute you can just about do anything you want to do and then the next

minute you can't barely do anything—you can't even wash clothes and stuff like that"

despite her reality of having a condition that worsens slowly across time. Her experience

of time was altered.

Lived other is the relation we share with others within our shared interpersonal

space (van Manen, 1990). As anticipated, meaning units frequently referred to lived

others, the relation with the therapist and the relation with each other. The relational

experience is illustrated in the following quote:

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I observed a lot of people there and they were smiling, they were watching me

and I was watching them because I was looking at them do their exercises in

therapy and everyone seemed to have a big amount of contentment in their heart.

This quote illustrates the importance of how the experience of receiving therapy was

shared with others.

I intentionally oriented to these existential lifeworlds as structures emerged. This

intentionality affected my choice of probing questions while interviewing, it affected my

dialogue with the text as I analyzed meaning units within each text, and it affected how I

reflected about structures as they unfolded between texts.

Structures provide a way of revising the text as a whole (Dahlberg, 2001).

Dahlberg describes these structures as paradoxical, portraying commonly shared

understandings while at the same time identifying the unique variation in the

phenomenon that is experienced by individuals. Structures must be flexible enough to

accommodate individual variation within a structure, but also separate enough to describe

and interpret the essential core of a phenomenon. The structures offered in this research

intend to offer an in-depth description of the experience receiving occupational therapy

by racially or ethnically different clients.

Phenomenology, as a methodology, is best suited to answering the question of

what is the experience of receiving occupational therapy when the client is racially or

ethnically different from his or her therapist. Phenomenology, as a philosophy, supports

an open stance, a willingness to suspend judgments and biases in an effort to better

understand another's life experience. This section described how the methodology of

phenomenology was used in this study. The following chapter will describe those
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expressions of meaning that comprise the structure of the phenomenon of receiving

therapy.
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CHAPTER 4

EXPRESSION OF MEANING

This chapter presents the experience of occupational therapy as described by

past clients who were racially or ethnically distinct from their occupational therapists.

People came to therapy because they wanted to become healthy. They experienced pain

or unsatisfactory performance in their everyday activities and they wanted to live

differently, either without pain, with increased function, or with more independence.

Individuals most often entered therapy by referral, from a physician, a teacher, or some

other community member. Though they experienced the phenomenon of therapy

individually, a common structure emerged from the experiences of the five individuals

interviewed in this study.

Five individuals provided voice giving structure to the phenomenon of receiving

occupational therapy. Each participant selected his or her own pseudonym with the

exception of one, whose pseudonym was selected by this researcher. A brief biography

of each of these informants follows.

Amina. Amina (pseudonym selected by researcher because of its meaning as

"trustful" and "honest") is a Somalian woman, wife, mother, worker, and patient.

Amina was mother to six children, all under age 10. She immigrated to the United

States from Somalia as a refugee approximately 15 years ago. English is a second

language for Amina, although she expresses herself sufficiently to communicate basic

needs. She described herself as "very busy" with her daily life routines. Amina entered

therapy because of a back injury and arm pain. She was unable to even hold her baby
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because of the pain. She received therapy from an outpatient clinic that specialized in

serving people with chronic pain.

Eagle Cloud. Eagle Cloud is a 30-something male who described himself as

full-blooded Native American and a person with a disability. He selected his research

name because it represents his Native American spirituality. Eagle Cloud was

diagnosed as a young child with fetal alcohol spectrum disorder and received

occupational therapy intermittently off and on throughout his childhood. As an adult,

Eagle Cloud continues to receive outpatient occupational therapy periodically for a

balance disorder.

Smiley. Smiley is an African-American male in his early 30's. After serving a

full tour as a Marine unscathed physically, he recently completed 6 months of

occupational therapy for a work-related back injury. He was discharged from

occupational therapy service of a small outpatient clinic specializing in chronic pain

conditions.

Missy. Missy is an African-American woman in her mid-40's. Missy cares for

her grandchild while parenting a remaining child at home. Missy has a strong work

history and values working outside of the home. Despite receiving nearly a year of

occupational therapy for chronic pain, she recently was awarded disability

compensation, a result of a work injury. At this time, Missy is seeking new career

options.

Suzy. Suzy is an African-American woman in her mid-40's who also received

occupational therapy occasionally across her lifespan to maximize daily living skills, a

result of cerebral palsy. Suzy works part-time as a disability consultant in a large

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university. She most recently received occupational therapy at a clinic for adults with

cerebral palsy because of some fine motor difficulties she was having in her arm.

Each of these individuals was discharged from occupational therapy within the

past 3 years. Two of the five received occupational therapy intermittently. The other

three informants, injured in mid-life, experienced occupational therapy for the first time.

All three of these participants received occupational therapy service from the same

small urban outpatient clinic. Four lived their entire lives in the United States and one

immigrated to the United States approximately 10 years ago. Four spoke English as

their primary language. Three were African-American, one Native American, and one

African.

Structure of the Experience of Receiving Occupational Therapy

These five people entered occupational therapy already having routine ways of

living. Their daily lives were unique and full of complex experiences and habits. For

each person, some critical event altered their stream of daily living, one consequence of

this accident or precipitating life-changing desire being a referral to therapy. Their

personal history, beliefs about healthcare, and fear of the impending experience, as well

as feeling welcomed, affected the therapy experience. As therapy continued, these

clients spoke of a comfortableness that developed in therapy. They integrated aspects

of therapy into their daily lives and spoke of changing selves with feelings of joy and

happiness.

Through the descriptions of five individuals who received occupational therapy

and who were racially or ethnically distinct from their therapist, the following thematic

structure of the phenomena emerged: Coming to Therapy; Worry and Concern; Being
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Greeted; Understand my Culture; See Me Like Anybody Else; and Put Yourself in My

Shoes. Each theme was identified by the process of imaginative free variation to assure

distinctness and each of these themes will be described in this chapter from the voices

of the participants. Themes were placed in the following order because of the

interdependent nature of the themes and it is the sequence that the individuals used to

describe their therapy experience. Coming to Therapy set the stage for the cross-

cultural encounter by focusing on the early relationship that formed the basis for the

longer-term therapeutic relationship. Understand my Culture moved into a description

of the historical and depth of being associated with an individual's culture. See Me Like

Anybody Else spoke to the desire to be seen as equal, the same as everybody else served

in that setting. They noticed people, things, and actions around them, particularly

noting time of just and equal care. Worry and Concerned labels the pain, distress, or

anxiousness experienced by clients as they reflect back to a time before therapy begins.

Being Greeted emphasizes the invitation to engage in therapy offered by clinic

personnel and valued by participants. Put Yourself in My Shoes described the request

for empathy in a world where clients and therapists differ. Each of these themes will

be separately described, emphasizing the voice of the participants in the description.

Coming to Therapy

Individuals entered into an unknown experience when they came to occupational

therapy. Each therapy episode was precipitated by an important event resulting in the

first appointment. For most it was a realization that help was required to maintain

valued societal roles. Three of the participants were unable to maintain work, either

outside or within the home. Smiley stated:

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.. .when I first found out I had to go through therapy, I really didn't want to be

bothered with it. I felt, you know, like, I'll be able to get better. I'll you know,

I'll try to stretch and do things my way, but I knew that wasn't working cause

I'm not a specialist in that field or anything. And you can only do so much for

yourself. I mean, you only know, you can only retain so much knowledge as far

as what you can do to help yourself cause a lot of people have different views

and different ways of recuperating, you know, from injury.

Amina expressed the discomfort experienced when not able to hold her baby, an

important activity required to be a mother:

I go back to my doctor after I have my baby? I don't feel any pain. But I was

very deficit and I cannot hold my baby long enough, you know? Our body it

work together what we don't feel when we are healthy. But when we lose some

of our healthy you know, muscle weakness or you know, some deficit, we really

feel the reality. I hold my baby. It was very hard for me, to hold it, first time,

my shoulder. My neck, I feel, it's just falling down.

Missy voiced the "hassle" of requiring therapy:

It is hard because one time one minute you can just about do anything you want

to do and then the next minute you can't barely do anything—you can't even

wash clothes and stuff like that. It's a hassle.

In her second interview Missy described her pre-therapy time as the following:

It's ugly. At the point say when I first got injured it's like, I was just a waste

cause I couldn't do nothin'. What can I do? I can't, I could barely lift up

anything, couldn't sweep, vacuum, none of that stuff. But I was hurtin' real bad
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and what I like to do, bowl, I couldn't do that, still haven't done that so

[laughs]... but, it's other things so I'm learning to be good at it.

She described the depression accompanying these life changes: "And I don't have no

kind of motivation. I was down in the dumps because I couldn't do the things I used to

do and stuff." Others spoke of the critical event leading to therapy as a personal

awareness of a recurring need. A fourth individual, Eagle Cloud, had received therapy

in his past and described a personal awareness of the reoccurrence of occupational

therapy in his life:

I mean, that's like riding a horse, some days you're going to be riding and

you're going to feel confident and you're going to make that horse go a little

faster, some days you might forget how to ride that horse. You might get on it

backwards, you might fall off of it when it starts moving. You know, that's how

occupational therapy is. You know, it's like riding a horse. You get off that

horse for a while you start walking and then you realize you're not, you're not

stable enough to continue so you need to get back on that horse.

Suzy voiced the fear that the therapist would support a suggested surgery leading to

possible difficulty with performance on a new job, having to choose between medical

interventions and finally receiving a job of suitable stature to her academic background.

Coming to Therapy illustrates the effect when people become clients and the tension

when health no longer supports existing social roles.

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Worry and Concern

While each participant had a different story, each used words such as "worry,"

"scary," "distress," or descriptions of unfilled expectations to characterize coming to

therapy. Like all people who experience trepidation upon needing rehabilitation, these

individuals also felt the wariness of a new health encounter. This was most exemplified

by Amina, who had only experienced occupational therapy through the stories of other

immigrants becoming healthy.

They [other Somalians going to therapy] are not comfortable. You cannot do

one thing one time you never done. Even working with small panties and t-shirt

you know, you never done that. We always wear that clothes, but under this,

you know? You know there was pretty much just a normal, you know, that

clinic, nurses and what I normally see. There are offices and around the

experiential. But when I get into, I'm expecting, you know, quite a way help.

In that you are hungry you order lunch. You get your lunch right away. That

why I expecting, you know, the first time I met them, you know. There has to,

to be something right away so I can feel better after hour. I didn't get that help

there and I realized later, it isn't that supposed.

Smiley, who attended therapy because of a back injury, used words including

"nervous," "worried," and later, "relief."

You know actually, I think they were a little nervous too because with each

person that comes in I'm sure they're all a little nervous. Everyone is a little

nervous when someone new comes around or they are in a new environment or,

what have you.

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Smiley's recollection of his first day included meeting his therapist who was quick to

relax him and "made me feel comfortable right from the start." He went on to say the

following:

He let me know-he really relaxed me, you know, that it's not anything painful or

anything that you have to really worry about. Like if I did feel pain, to let him

know down the road. But the thing that sticks out in my head most of all was

they were very quick to make you feel comfortable about just joking around and

making a comfortable atmosphere for me to deal with which I felt was real nice

because I never had therapy before.

Eagle Cloud spoke for all people with disabilities who have received occupational

therapy across the life span, when he stated

Because I can tell you, you know, I can tell you, people who need occupational

therapy are already emotionally distressed themselves because they need it.

They don't, they might not understand it, they may understand it, but, and then

it's a great thing to have, but you know, you always hope in the back of your

mind that you will never need it.

Missy, a woman receiving occupational therapy for a back injury, also spoke of

nervousness prior to therapy.

It's like, OK, when you go in, when you first go, like when I first went in I was

like nervous and everything, like, are they going to torture me and all this and

that and get mad if I can't do it and stuff like that?

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Participants described several causes of their worry and concern. Missy

described concern over health insurance coverage, with a long wait required before

therapy could begin:

Cause from before I get to that stage it was back and forth with, were they gonna

approve it? Or did I get approved? It was like month later or being finally the

therapist said they called me, they said that we have you approved and can you

come in this Thrusday for you? I'm like, OK. So I went in like, oh, oh, what

am I doin'? What they gonna do? And all this, I'm thinkin' it's a torture

chamber!

Amina also described concern over insurance:

My husband, he never had any insurance. Never, in his life! He been here

almost 28 years. He never had insurance, he just healthy himself, you know, by

over-the-counter medicine and it's OK. He doesn't have any sickness or

diseases. Insurance is very tough so sometimes you are sick, but you are scared

without insurance. I have normally medical from the county, but many times, I

can say maybe four times it closed, cause of some reason, cause of our income,

because you missed the bills, and you know? Apply and go back. It takes time

and so it's not easy anyway.

Smiley discussed financial worries and concerns due to his limited employment while

injured:

I just kept my head up and kept moving on, but the stress was always there

because bills was still comin' in. Life my significant other, she was stressed out

even though she never pointed a finger, but yet she still gave me support.
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Basically all the bills were on her and then still I'm waking up certain days and

I'm in a lot of pain, but I still have to try to keep go through with everything. It

was difficult. It was difficult. I wouldn't like on anyone going through it, it's

something stressful!

Amina described her difficulty living as an immigrant with limited English speaking

skills as part of her concern:

It's not easy, you know? To be shunned when you are, it's just very limit, you

might have a lot of stress, you know? More you know the language the more

you get help or you know you can say your problem. "I have this and I need

healthy." If your language is very limit, you're pretty much a disabled person.

You need to say something to body you cannot express. And even sometime it's

interpreter, it they didn't help you cause you have your own feeling, you have

your own worries and you say something they are, you know, they didn't say it

the way you want.

All participants voiced the anxiety and worry associated with coming to therapy

the first time. Therapy was seen as an unknown place to "get healthy" or regain lost

functions. Participants were concerned about whether they would be asked to do things

they have never before done, whether they would get better and return to healthy or

healthier living, insurance and financial stability, and how they would be treated when

engaged in occupational therapy. The experience described in the sub-theme Worry

and Concern is one filled with tones of uncertainty worried anticipation.

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Being Greeted

Fears were at least partially alleviated by the greeting contributing to

participants feeling welcomed in therapy. The greeting occurred through interpersonal

responsiveness and by physical receptivity of the environment. Three of the

participants valued the level of respect they encountered in their recent occupational

therapy experience and one participant, Smiley, spoke of its connection to a mutual

feeling of respect.

The greeting. The greeting is respectful. I mean, when I was raised up as a

child, my Mom always told me, you say, "Hey, how you doin' today? Or,

"Good morning", "Good afternoon" or somethin' like that. Uh, respect was

there in that.aspect also, uh, not pryin' into my business. That's respectful to

me. I mean not askin' me, "So, well what are you doin' for work now?" I mean

and that's OK if someone just is curious, you know, just to make sure. But I

was already stressed out. And I was workin' but they knew I was tryin' to find

somethin' else. And uh, occasionally, "you had any luck lately?" You know,

"have you had any luck finding anything new for ya? Or things like that and

that nature? Um, but respect was always there. They was always courteous,

um, you know, as far as courteous as in like I said, greeting, and then also, just

puttin' up the best, puttin' out the best atmosphere that a person could walk into.

I think they really did good with that. And like I said, maybe it started out as

they were tryin' to do it, but I think it became a part of them after a period of

time.

During Smiley's second interview, he again spoke of the power of a greeting.

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I mean and I know that reality is that everyone is not happy all the time, but it's

nice that you can project that because you never know when a person does need

that to lift their own spirits because most of the time someone smiles at me, if

I'm walking outside and someone smiles if I'm having a bad day, they smile at

me. "Hey, how are ya doin'?" or whatever, the same aspect as what they're

projectin' at the therapy place. You know and now about occupational therapy

and right there goes a long way. Just a smile, "hey, how ya doin' today?" Even

if you're doin' really bad, just for someone to take the time to ask you somethin'

like that, that goes a long way in my book.

Missy, who received therapy from the same clinic as Smiley, also spoke of being

greeted. She described interactions that were warm and welcoming.

They was so nice and sympathetic with me and stuff, um, first I thought of like,

is it just me or is it everybody who walks through that door, they treatin' the

same way! Everybody with a smile or "hello" and everything else so it's real

nice. And they have, they like if you want coffee or whatever, cappuccino, they

got a little bit of some. It was just nice. I liked it. Like I said, I would go back

just to be going!

Sometimes it was the receptionist who greeted individuals the most enthusiastically.

This individual became the front-line greeter for several of the clients. Missy and

Amina told of the receptionist at their clinic:

Missy: She was the first person when you walked through that door. With that

big old smile. It was like, if she was gone on her vacation, they didn't seem the
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same. But they was still friendly and everything, but you just didn't have that

person to smiles and happiness when you come through the door. Big old, 'How

you doin' today!" And stuff like that. Yeah, it's real nice to be when you

walked through the door.

Amina: She just, you know, accepts you. She knows you. You know, you are

more, you are like, I don't know how I explain her because my English is

limited. She so friendly. She looks like she made a lot of effort to make happy,

the patients, [undecipherable] I don't know she African American lady though.

I watch her most of time. I sometimes thinking, OK, maybe today she's just

normal, you know? [laugh]. She's acting, I think that twice. And everyday she

looks like church, you know? It is good. What I mean is that she has a lot of

energy to welcome her patients.

Amina: I like their secretary. First time I met her she was so welcome, more

than, more than she, you know, she supposed to. Very welcome, you know,

smiling and you know, and finally you know, therapist was very good too and

you know, one of the time I like the environment there. I kind of feel of, you

know, I am back to them when I graduate from the program.

Participants also felt welcomed by the environment. Sometimes it was the

overall atmosphere and sometimes participants described the physical signs of

welcome. Smiley and Amina described the infectious quality that emotion can have

when it is consistently visible within the environment. And sometimes it was the

supportive physical space of the waiting room. Clinic staff provided magazines in the

waiting room and even offered massage chairs for those waiting to be seen. As told by
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Missy, ".. .if you want coffee or whatever, cappuccino, they got a little bit of same, it

was nice." Smiley also spoke of the institutional qualities of the greeting. He described

good feelings that transcended the interpersonal relationship within a client-therapist

dyad.

A few people, they might have been a little grumpy on certain days like I was,

but I would see them, some of the therapists interact with them and then I would

notice that they would start smilin' and laughin', too. So and then sometimes

after I would be getting' my therapy and they be talkin' with someone else then

that person would speak to me- didn't even know who I was! So I knew that the

atmosphere, the mood was set, you know, from that point on out.

The first days in therapy were recalled as critical days and remembered by all.

Being Greeted helped to alleviate anxiety in the first days. Being Greeted consisted of

warm and friendly smiles and verbal invites to enter and participate. These respectful

interactions were perceived as friendly and inviting. The receptionist who first greeted

clients at the door particularly invited participation. Individuals also described

welcoming aspects of the physical environment. Comfortable chairs, available

magazines, fancy coffees, and access to massage chairs for waiting individuals were all

seen as signs of welcome and invitation.

Understand my Culture

Culture is core to each individual and a vantage for understanding the cross-

cultural therapy encounter. Participants described the nature of culture using words and

phrases such as "my people," "culture people," "I was taught," "my culture," "my

background," and "cultural standards" to voice a connection to an entity greater than

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themselves. As stated by Eagle Cloud, "[Culture] helps me, not that I ever forget who I

come, where I come from and stuff, but it helps me remember who I am." Most of the

individuals ascribed learning their culture to a family member or members. Suzy shared

a story of an interaction between her and her mother about being black in a white world.

Everywhere was white.... I don't know if I even thought about it. I know for a

little while when I was little, I thought I was white. And I voiced that out loud

and my mother just about died. "Wait a minute. Hold on! Hold the phone!

You are not white." . . . She was horrified! But that's cause I spent so much

time. She just said, "No, no, no, no, no! You're not white, you're just mad."

We didn't have a long conversation because I was little then, but then she started

having more conversations with me about African Americans and then it started

turning into kind of history lessons and then she started getting me books on

Martin Luther King and those kind of stuff. She was just, "No, no, no! We can't

have that!" My grandmother didn't see the problem with it, her mother, but my

mother was like, "not doing that to my child! No, no!" But then my mother and

her mother, they didn't see eye-to-eye on a lot of things, a lot of things [laugh].

Eagle Cloud frequently talked of being raised by his grandmother and the important role

she played in his understanding of his Native American culture.

My grandmother always taught me that teach them and if they take your

examples and listen to you then you know that they are your student, but if they

are, but if they miss your examples and they disrespect you as a person of

culture and a person of disabilities, then that means that they are not ready to

learn yet. Doesn't mean that they're bad, it just means that they're not ready.
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Amina spoke of having to do things here that were against her culture or against the
way

she was taught to do things in her birth country.

(first interview) I don't feel comfortable going man with the pool. I know its

clinic and I don't feel that I can do something to staring at my body or you

know, I don't feel that way. But at the same time, it's not the way I grew up and

it's against my culture, you know? Go swimming with the other man if you

know which is not my husband or someone, you know? And I never do it.

(second interview) And all we not granted, they come from someplace, you

know? To come here. Either war or you know, they don't like the life they

were or moving from like you, moving from Minnesota and move to Somalia,

it's not easy to vision. And you know, it's not easy choice. So we come here.

Almost I can say, no choice. And you know we have kind of happy life and also

it's very difficult life too. I'm not happy to go back Somalia anyways so I have

to become a good fit for here.

Others described culture based on difference experienced by the individual.

Clients perceived themselves as looking different than the therapists with whom they

worked.

Suzy: Well, if you want me to be honest, I just figured that that's just another

example of um, how a particular ethnic group, once again, has lack of

opportunity, the where-with-all, whatever you want to call it, to get into a field

that's going to pay them decent money. Because a lot of things that pay decent

money, and there are other things, of course, there are technical things, there are
 blue collar things, that make, what I meant is, if you want to go the

"professional" route, um, when you look around you, you see that most people

who have done that and who have gotten somewhere near the top if not at the

top don't look like you!

Suzy: When you go into a particular situation you are more than likely going to

be the only person of color there. When I came here [place of work], I knew

that I was going to the only person of color. And I, I mean it is the same with

getting therapy. I never, I have never in my life seen... I take that back. Once

in high school I had physical therapy at home and I had an African-American

physical therapist and her name was Suzy. Yes. But she was, I had her for a

very limited period of time. I guess I was about 17. She was the only person of

color I ever seen in that particular field. Yeah! We had lots of fun! Um. She

did physical therapy and we had lots of, I mean, you know, we had lots of...

there's a joke that PT stands for "pain and torture," but um, she made it OK. It

wasn't great, but it was OK.

As an immigrant, Amina described particular hardships associated with being an

African immigrant.

It's not easy, you know? To be shunned when you are, it's just very limit. You

might have a lot of stress, you know? More you know the language the more

you get help or you know you can, you can say your problems. "I have this and

I need healthy and you know?" If your language is very limit, you know, you're

pretty much are a disabled person. You need to say something to body you

cannot express. And even sometime it's interprise [interpreter], if they didn't
 101
help you cause you have your own feeling, you have your own worries and you

say something they are, you know, they didn't say the way you want. No one

can cause be said to you anywhere.

Although culture could be identified through differences, participant descriptions varied

when imagining client and therapist sharing a race or ethnicity.

Missy: I don't know. It might have been, but then again, it might have not. I

don't know. I really don't know. Because some, I'll say, some of my culture

people they tend to, you know, try to, I guess, down the other or don't work with

them well or stuff like that, have the attitude toward them that they can't do stuff

like that. So it might have been a different experience.

Smiley: I don't think it would have made a difference [having an African-

American occupational therapist]. Because, judging from what I seen, from

what I could see during my time of therapy there, I think that there's a standard

that has to upheld in that place.

Two participants described the situation when client and therapist share the same

culture as a situation favorable for therapy outcomes.

Amina: I feel, as I say, maybe they [other people of my culture] are more

comfortable. Someone who more understands their culture, of the society you

live. We cannot get everything we want. We have to accept what we can get.

But a lot of my people consider if they have like, um, someone their culture, like

ah Muslim background, they are more interested like, you know, men they don't

care, but you know. Some ladies, our culture don't associate a lot. Associate—
 you know? Women kind of associate with other people without collisions. We

are not men. We are not somehow, sometimes we have to worry small charmer

on, you know?

Eagle Cloud: I like to stay as much into my culture as I can. I mean I'm

flexible to working with any ethnicity as possible, you know, any other culture,

but it's, you know, I'm going to open up more to somebody that's of Native

American descent like me. Because you're not just looking for that one-on-one

psychologist everyday support, you're looking for the spiritual and the, you're

looking for the spiritual and the cultural support too. Of course, you know,

cause I was raised by my grandmother and so you approach everything with

spirituality and you know, culture, [discussion about social work and placement

decisions in the course of his overall services].

Eagle Cloud: And I got to tell you, you know, as patient as I can be, it's really

hard to teach somebody who doesn't have any patience or tries to overpower

your beliefs with their beliefs. And see, that's the one thing I like about having

a Native American psychologist, it's you know, it's not a power trip or a power

struggle about who's beliefs are more real. You know, and that's real easy for

people who don't understand the Native American culture and don't have any

like sensitivity training. It's easy for them to push their beliefs. And that's the

one thing that's not healthy. You don't have to believe the same as the same

person but critical for persons with disabilities it's real easy.

All individuals talked of the role played by culture in who they were and how

they interpreted the health care encounter. Culture was something to which they
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belonged, from which they came, a filter of affordances for opportunity, and as a lens

contributing to mutual understanding when client and therapist shared a culture. These

themes describe attributes of the individual brought to the therapy experience.

See Me Like Anybody Else

The theme See Me Like Anybody Else is about the similarity of all individuals in

the role of patient or client. People noticed how they fit in with others receiving

services and compared their treatment to others around them.

Smiley: I mean even in the beginning from initially seeing what was around me,

but in the end, I mean even in the beginning and the end, I didn't, I wasn't, I

don't feel I was mistreated in any way. I don't feel that uh, that there was any

stereotypes against me. Um, no one even made any white gestures or comments

or anything like that. I didn't feel anything like that. And uh, like I said that was

really what made me feel good because no one pointed a finger at me or made

me feel like, oh well, like I said, I observed a lot of people there and they were

smiling. They were watching me and I was watching them because I was

looking at them do their exercises in therapy and everyone seemed to have a big

amount of contentment in their heart. As far as the treatment that they were

receiving and uh, how the therapist were towards them. And I feel that everyone

did feel they were treated, you know, in a humane manner, ah respectfully and

not stereotyped against or whatever. And uh, like I said, I just remember a lot of

smiling from the, the other people who were from different countries and some

other Afro Americans that were there, uh, they seemed pretty nice toward me

and towards the staff.

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Amina relates her feeling of not being different as feeling respected.

Oh, I don't feel they treat me differently. They just treat me, they treat me good,

they—I can say I don't feel any different. Even outside with other people who

are Cambodi and different culture, different you know, colonists American, and

I was very comfortable. I don't feel different. I don't feel, you know, dismissed

by appointment. I don't' feel hate any, you know, disrespect towards. I just

feel, you know, respect. Respect person, you know? They call me for my

appointment here and do the work I'm supposed to they supposed to do with me

which is therapy.

Missy interpreted feeling the same as being treated like a regular person: "Wasn't any

differences, just like there was no colors or racial things when she was on the job—just

treating me like I was a regular person. Just from the bottom on." Later in the same

interview she tells of being shocked that all people were greeted the same.

Yup-cause they cared for ya. They care. Everybody when you walked in, 'Hey,

how you doin' today? You OK? How's the same?' And that was to everybody

who walked through the door! No matter what color, what race, whatever they

was. That was the treatment they got when they walked in the door. I was

shocked. I just peeked in and just looked.

To Smiley, being treated the same was comforting such as one feels when at home.

I noticed that everyone was treated the same, equally. And uh, that made me

feel more at home, too, to be able to see other people from different countries to

be treated the same way as I was. You know, cause I felt like I'm just your

average Joe Schmoe what you know? It's like, it's nice to see somebody else to
 be treated the same and it's not like, you know, that it's singling out of

individual selves, just to make themselves feel better.

And, cause I remember always looking, cause I'm a person I'm always

observing and looking around me all the time. That's the nature thing with me.

And uh, God gave me that gift to be, to try to be alert and um, but I was always

lookin' at the other people that were there and um you know, me being a black

male, regardless of it I was Asian or Hispanic, I'm gonna think, OK 'Well I'm

this, and they're that, do they think the same way? Do they act the same way?

What would they do in the situation you know not necessarily because we're

different, but because we are different in this as in shade of color, you know?

And that's sad, that's how society is. They go, some people go to extreme, but I

always thought, OK well, how do they act? How would they act in a situation if

they was if a situation occurred or if they was disrespected or whatever?

Amina also described feeling "undifferent."

I don't feel I'm different which is glad. I mean, I don't feel they treat me

differently, I don't feel they see me as different person, you know? I just feel

one of the patient.

Participants spoke of noticing others, watching how others were treated, and attending

equal care of all clients. Sometimes they compared times when they felt singled out or

different to confirm a time when they felt the same.

Missy: If you instead all you see is one certain type of clientele and you seem

like the odd ball out, you like, ouuuu, you feel kind of like out of place. Up in
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there you see all kinds of clients there come through there. It was like amazing-

everybody they come through there. So that was real great.

Suzy: I, as you can tell, sort of feel people out with jokes and that's how I sort

of break the ice with all people. But particularly if I'm the only one in the room,

um cause it helps keep me from focusing on the fact that, once again, I'm the

only person in this room- and my mother and I had a little joke since she's been

telling me since I was a kid- and that is, you know, if you're gonna go

somewhere and you know you're going to be the only African American, just

make sure that you don't say anything racial cause you don't have anybody to

help you out! so, uh, you know. It's just kind of like, watch, you know,

watch and don't make generalized statements about white folks in front of them.

You know, that kind of stuff.

In addition to receiving equal treatment, they all voiced a watchfulness, an awareness of

others, and an acute awareness of diversity within the other clients. A clear theme

emerged about wanting and watching for equal but unique person-centered treatment in

health care received by all clients.

Put Yourself in My Shoes

This theme describes the caring that participants want to see from their

therapists. Caring relates paying attention to the individuality of the client. The caring

is described in action phrases such as "coddle the inside," "ask my concerns," "show

concern," "care enough," "study the inner being," and "let me be me." Nearly all

individuals voiced the desire that therapists Put Yourself in My Shoes.

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Eagle Cloud: That's where you need to, sometimes you need to put your

medical experience aside. Look at that inner being of the human being. Know

that parent, that child, put yourself in their shoes. That's the best way to learn.

If I were Eagle Cloud and if I were limping and falling all over the place, would

I let society tell me that I can't do something? Or would I get up and do it

anyway even if it wasn't done correctly. You know. Every person you work

with you put yourself in their shoes and you really, let me tell you, you'll figure

them out a lot easier that way than you will trying to "Well, according to this

study, it says they can't do this." It's not about studies. It's about the individual.

Smiley: .. .these people, they really have a compassion for what they are doing.

They really, um, are concerned whether that person is progressing. Um, like I

say, they cater to your needs! I mean, you know, they know those people are in

pain, they know those people have to get rehabilitated and they, I guess, at one

part in their life they must have decided, "well, you know what? Let me, let me

see how many people I can help. And I mean go about it as you go. I mean, let

me look at it, in it, in a higher, if the shoe was on another foot. Or you know, if

I was in their shoes," or you know, so I think that they looked at it from that

point of view. From that aspect. That's what I believe because it's no way that

a person could be so compassionate in that way without looking at it from

another side. You know or looking in the mirror to see, so. That's what I feel.

Smiley (second interview): And you keep it [therapy interactions] simple and

you know and always try to look in the other person's shoes, look in their shoes

and then you make it difficult. Don't judge it because what you see, you have to
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feel it, see it, and feel it. These things go together you know with simplicity.

Cause those are the simple senses that we have that God blessed us with so.

Missy: It's kind of hard to train somebody if they not people person-oriented

already. That's somethin' like you could be already have that skill

automatically in you though. So, how you want somebody to treat you is how

should treat them. So. And talk to them and stuff and so. That's why I feel like

they should already have that skill. It's nothin' like that prior to bein' taught to

be automatically make conversation. You see people from a different country

and there where you know how to be treated. It'd be kind of hard to keep some

people.

The ability to Put Yourself in My Shoes is described almost as an attribute. Missy

questioned whether such an ability could even be learned. Smiley speaks to the skill of

seeing and feeling "it," the "it" being an elusive quality to the interpersonal relationship

between client and therapist. Two sub-themes emerged from Put Yourself in My Shoes:

feeling caredfor and let me be me.

Feeling cared for. Individuals felt cared for when therapists interacted in a ways

that were compassionate, centered on client-performance, expressive of general overall

concern about health, and asked questions and listened to answers. Compassion was

heard when therapists asked questions about overall health and well-being.

Missy: It [a time when I felt cared for] didn't have anything to do with my back

[reason for therapy], it was my mouth. I don't know what it was, but it was,

like, I couldn't, hadn't been eating in two days, because I couldn't swallow or

and it was swole [swollen] on this side, and I was just in pain. And the therapy
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was so kind, she said, "You OK?" I said, "I can do it. I'm OK, but my jaw is

killing me. My gosh, I haven't eat in two days." She said, "What?" She said,

"That's not good. Have you been to the doctor?" "No" cause it was like she

really cared, was concerned about that situation and not just cause of my back.

But then so I felt like it was more, they care about the individual, not just what

they're there for, so. That was really made me glad. She didn't have to stay for

that one. I was shocked when she cared for, like you know, when I got released

she said now, "OK now you make sure you go to the doctor and get that checked

out". I'm like, "OK" and then that day she let me go early. I was surprised.

[laugh]. She was, like "I'm not goin' to work you hard today. I'll let you go

even 15 minutes early because you're in pain." I'm like, "OK, that you. I

appreciate it." Cause I was really in pain. Boy, it was time.

Smiley: And like I said, when I did come in grumpy or just in a bad mood, not

anything focused towards them or not wantin' to be, but just because of how my

life was goin', um, with the different stresses, um, financial, job search or

whatever the case was, I was still working with an organization that I was really

over my restrictions, um, I noticed that you know that these people really

showed concern as to whether how I felt, you know? And I noticed, you know,

right away, and I love to laugh so I noticed that they were really there for me in

that matter and I would go back to them.

Feeling cared for also was felt when the therapy was "at their level" and

"relaxed." Missy explained this as, "But they was very patient and everything. They

took their time and asked me my concerns and asked me what it is that I be able to do
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and all that other stuff." For Eagle Cloud, it was feeling that his "inner self has to trust

for the outer self can do its work." Therapists, he said, ought to "coddle the inside,

work on the outside." It was important for individuals to experience therapy that was

oriented to individual progress and paced for each individual.

Smiley: I remember that they advised me that I didn't have to exert myself or

anything. They just asked me to do what I could possible do, like they would

test me on the machines um I think it was like once a week actually, at the end

of the week or something like. I think I was going a out two days a week so the

first uh, the first time I would come, actually every two weeks or so, they would

test me on the machines to see where I was at. And every time they would test

me they would let me know, look, don't over exert yourself, "do what you can

do, what you feel you can do" and they were also reassuring, when they let me

know, "you're advancing" and things like that, "you're getting better." And that

made me feel good because when I first initially came there I was in a lot of

pain.

Missy: It was kind of hard at first, but they would take their time and do a little

bit at a time. Wouldn't push me too fast or whatever. It was really a good

experience, [then later in the same interview] At first I thought by them being

younger than me, OK, they would be like pushy and bossy and stuff like that,

but they wasn't. They was like, OK, let me know if this hurts more, if you can

do it, if you can't do it and stuff....

Smiley: And another thing I want to commend them on is they were never

pushy at any time. They were never pushy. I mean they was just more or less
 Ill

make it as though it was a suggestion. Well, Smiley this is, you know, yeah you

work out and this is your big muscles are strong, but your weak muscles, your

small muscles are weak. And this is what we suggest you do. You can do it at

home, and etc. When someone suggests somethin' to me rather than tellin' me

what to do it's a whole different world. And suggestions make things or break

things. When you tell someone what to do and me being an ex-Marine myself, I

can tell you, I hate it when anyone tellin' me what to do man. Suggestions. I

say suggestion somethin' you know and also let 'em know that what could be

the result of not doing this and how in the long run how it would could

deteriorate the muscle, destroy somethin', you know how it could be long-term

arthritis, whatever the case is. You make a suggestion, a lot of the time, nine out

often times they'll say, "Oh, you know, I probably do need to do that."

For Eagle Cloud, the compassion within Putting Yourself in My Shoes occurred when

therapists adapted to his learning style.

I think being culturally sensitive means being able to adapt to the learning style.

And how to incorporate it into... it's sort of like, you know, they're being

flexible with you, you being flexible with them. So I mean they'll learn your

way, but you'll also learn their way. And it will eventually come together. And

I think that's what culturally competent, you know, that's what 'cultural

sensitivity means to me. It just means that people are willing to learn my way as

I'm willing to learn theirs.

So, I think, I think it's all about flexibility and patience. I mean cause 9 times

out of the 10 you work with people who need occupational therapy. They're not
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very patient with themselves so the people around them need to learn to be

patient in order for us to be patient. See, that's how I do things. If you're

patient around me, I know what it means to be patient. But if you're all fidgety

with me, trying to hurry up and get things done, then I channel. I tend to,

people's energy are like super glue to me. If somebody's really fast and not

focused then I'm not going to be focused. As and in occupational therapy

you've got to kind of study, OK, we've got a quiet one on our hands. So I need

to work with him calmly because he has a calm sense about him. You know,

you know, it's just like a puzzle. You've got to be able to make sure that the

pieces always fit. You always have to be flexible to have multiple energy levels.

You know, you're going to work with somebody who's hyper, you're going to

work with somebody who's slow, you might work with somebody who's in the

middle. Or in the between, or either way, you have to be flexible with them

otherwise, you know. If you're not flexible you're going to lose more than you

gain. That's my philosophy.

Feeling cared for felt like being at home. All but one individual actually used

the words "felt" or "feeling like I was at home" in their descriptions of the experience

receiving occupational therapy. Smiley emphasized the comfortability that is a part of

feeling cared for. Amina and Missy both described a closeness, an intimacy that

reminds one of a dear friend or a family member.

Smiley: Feeling like you're at home, feeling comfortable, when someone makes

you feel like as though you're at home, that's once again, more structured

environment as far as focusing on the individual. So that's why that individual

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feels at home! Because he has some attention on him or her and he feels like

they took the time to want to know how I feel. They took the time to make me

comfortable. Ah, they took the time to make me feel at home so now I feel like

I'm at home.

Eagle Cloud: And its comfortability as far as occupational therapy is concerned.

So it's just being culturally sensitive, um, you know, and patient.

Amina: And the girl, I used to make with words, was a nice girl so—I helping

me out, friendly, and talked to me.. .it helped me a lot to welcome or I kind of

feel when I almost, when I graduate from the program, I feel family or close

friend.

Missy: It's the way they treated me and stuff. And so caring and stuff. You

have to ask me, I guess, a person would have to actually go and, you know, get

the bath yourself, but yeah [referring to some therapy that occurred in the pool].

I felt like I was at home. Had a personal therapist come to my house takin' care

of me. Boy it was nice. It was very nice.

Missy and Smiley both contrasted those times when they felt cared for with times when

they did not. Each described these times as feeling "like I was just a peg on a wall."

Missy: That's the importance of placin' them there and getting them [clients] to

do what you need them to do to get the way it should be. Is bein' you know,

nice and kind and generous to them [clients]. Not just, you know, OK, I need

you to do this and you know, leave 'em there, don't pay 'em no attention and

then expect them to keep on the steady pace of the way you wanted them to do it

in. Stead of just sittin' there for a few minutes, check on 'em to make sure that
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they got it down pat, then sayin' I got to go do this and I'll be back to check on

ya... Cause the other ones that I went to, they didn't do that. They just showed

you one time and say, "OK, this is what you need to do." And they was gone

off somewhere and you didn't see them until therapy time was up.

Smiley: I went to [another therapy place] right before I went to occupational

therapy. And I went there and it was, it was decent treatment and everything,

but I, it was, that flair wasn't there. That spark wasn't there. It was kind of like,

routine. It was really routine when I went there. I got in there and you know,

the doctor that I was seein' you know, he would ask me how I am doin' and

everything, but it was just kind of like a routine thing. And I remember without

you even noticin'. But there it was, it was different.

As a sub-theme, feeling caredfor describes participant experiences about being

cared for in the occupational therapy context. Participants experienced feeling cared for

when the therapy was at their level, when it was paced appropriately for their rate of

work, and when it was adapted to their learning style. It was also important that they

not feel "like a peg on a wall." Participants wanted to feel tended to as an individual,

engaged in a direct relationship with the therapist.

Let me be me. Let me be me describes participant expectations to be viewed as

an individual, unique in their abilities, reasons for therapy, and distinct in their identity.

Smiley describes his need to feel unique despite being part of a larger group of clients

served at the clinic where he received occupational therapy services.

You know and right now it [experience of receiving occupational therapy]

comes to mind it reminds me of a - 1 went to a marshal arts class and this was
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back when I was in Japan and I remember and this situation is similar, but yet

different because when I got there I was thinkin' this was going to be more one-

on-one. See they make you feel this was a one-on-one, you know, and the one-

on-one is the important thing. It's like, well, they really care about me. And we

all want to be in the limelight sometimes you know? And it's the one-on-one

cause in that marshal arts class there was so many other students that I feel like I

didn't really learn anything. And I was only there; I think I dropped out after

only two weeks because it was too many. I didn't get the one-on-one that I

wanted. So I lost interest and everyone is human. If that one-on-one is not

there, you know, if everyone was in a group at all times you would really not

have a detail about who that person was—their personality. You would just say,

I know all these people. Handful of people, no personality. Room full of

people—one big room of personality. And then that as far as it goes. But yeah,

the one-on-one has what I notice I got from them and that and also they got a

chance to see who I was. And by me smiling back, not because I had to, but

because I like to, and because it was funny to me and I enjoyed it, it made me

open up even more. And so because, I think that's even I think that's what it

was.

Missy also valued the one-on-one or individual care in therapy.

But over there at [the clinic] where I went, I said, they treated you like

individuals. They didn't just throw you off to the wolves and go on by their

business. They actually worked with you and talked to you. I mean all the
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while they was pressing your body and everything, they was talking to you. It

was really nice, helpful.

For Eagle Cloud, Let me be me was expressed when health professions saw his distinct

being against the background of their diagnoses. Eagle Cloud illustrates his desire that

therapists could look beyond their formal learning to see him as an individual.

I find a lot of occupational therapists, I've had occupational therapists who

would be so busy listening to the regular position, "Well, this doctor said this."

It's like, well, you're working with me, don't you see it a little different than

what you see in his chart? You know? You got to be, you know. I mean, he

might have something in his chart, but nine times out often after you start

working with me it's going to be either higher or lower as far as my learning

ability and just needs of occupational therapy. It just doesn't, it doesn't mean

that I'm never gonna need occupational therapy. I might have times when I'm

doing really great and I may have times when I have to go back and go through

more occupational therapy. You know, it's a part of everyday life, [long quiet

pause] Right... [Training the therapist] can be challenging, it can be rewarding.

You know, it just depends on who you're working with. And how willing they

are to be trained. That's always hard to train a therapist who goes by what they

were taught before they met me as a person. "Well, that's not what my book

says." Well, I'm not that book, I'm one person.

Let me be me also represents the autonomy permitted to individuals as

associated with being an adult. Suzy and Eagle Cloud most strongly described tension

at being treated as less than an adult by health care workers. Both of these participants
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had received occupational therapy as children and then again as adults. Suzy voiced her

appreciation when a clinic for adult with her diagnosis opened. Prior to 3 years ago she

reported going to children's clinics to receive medical care. She states, "here you are

like 35 and they're talking to you like you're 10! So that was one of the reasons for

having an adult clinic, that you actually get treated like an adult!" One characteristic of

being an adult is having identity, voice, and permission to express oneself.

Suzy: I'm not saying that maybe somebody doesn't have their own individual

biases, what I am saying is that my overall impression is that you are just treated

like an adult, um, who is capable of speaking up for yourself. And so you know,

I think that, in my opinion, that overrides whatever they might think of whatever

color you are. Which is pretty enlightened because you think about how many

other situations where you definitely don't get that feeling.

Eagle Cloud expressed a similar perspective in this interchange:

I'm always constantly battling. One of the things I battle now too, is not only do

I battle cultural competency, you know, and people being sensitive to me, as a

person with a, you know, a person with Native America descent, I also battle

with people dealing with me as a person with a disability.. ..And it's like, you

know, I mean some people need like 3-year-old language or 2-year-old language

or 1-year-old language. I'm not saying that every person with a disability is an

Eagle Cloud. But you know, but just the concept of "OK, now Eagle Cloud,
now that's not OK." "You've got to not do that" [mimicking a condescending

tone]. Excuse me, how old do you think I am? I'm pretty much past the age
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when I act like I'm a 10-year-old. Or there are days when I act like I'm a 3-

year-old, but let me tell you, that don't last long.

Amina spoke of a desire for health professionals to see her as unique from the

background of all Somalian immigrants.

A lot of people they are, they don't do very strict for that culture. I don't feel,

I'm as strict in my culture. I have my own beliefs. I respect others and I have to

respect myself. And you know, you don't have anything, you know, saying not

to enforce your other in somebody, you know, where you come from. There is a

lot of diversity. And people see, you know, someone more understand who they

are.

Let me be me represents the value placed by individuals on themselves as

members of the healthcare team. Eagle Cloud thinks of himself as the teacher, telling

me, "a client come in, he's your teacher, you're the student" as he described the unique

knowledge he contributes to the team.

I think the thing that people forget is each individual lives inside his own body

so he knows his body better than anybody. You know, it's like when somebody,

just cause they work with me, that's like assuming that they just stepped inside

my body every day and said, "Oh, he's got a broken arm. Oh, his leg is bruised.

Oh, his clothes are, you know. It's like- and when you get into any

professionals you can't ever go into every situation knowing everything.

Later, he described the experience of receiving best-practice therapy with the metaphor

of a puzzle.
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You know, you're, with your confidence and their confidence, you're going to

do exactly what you want to do for your patient, you know. You're just working

on a puzzle together. I come in with a broken knee, I have the pieces, you put it

together.

Smiley similarly talked about the experience of being on a team, "everybody was on the

same page, the same sheet of music."

They made it a point to work together to do this so that's you know, why I kept

sayin' I emphasized it was team effort. It was never an individual thing or

certain people just wanted to, you know, participate. It was a good thing and

that's one of the few places that I've seen that.

Let me be me expresses the individuality desired by participants as part of Put

Yourself in My Shoes. Participants expressed feeling cared for in association with let

me be me. These two sub-themes provided the internal structure for the theme Put

Yourself in My Shoes. This theme represents the message, voiced by participants, of

what they wanted therapists to know.

Summary

The structure within the phenomenon of receiving occupational therapy when

client and occupational therapist are racially or ethnically distinct contains six major

themes: Coming to Therapy, Worry and Concern, Being Greeted, Understand My

Culture, See Me Like Anybody Else, and Put Yourself in My Shoes. These themes are

organized in this way because each interrelated theme flows into the next. Recipients of

occupational therapy are first patients, with all the Worry and Concern that patients

experience when occupational therapy is indicated. Most of the worry and concern
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revolves around the primary impairment or the reason for therapy. However, clients

who are racially or ethnically distinct also need to worry about whether their health

beliefs will be accepted or whether they will stand out as being different. Being

Greeted is the invitation to therapy. The therapy world draws clients into therapy by a

friendly tone and a welcoming message. Understand My Culture speaks to the central

role that is played by culture in the everyday lives of the participants. Individuals seek

understanding, acceptance, and permission to retain culture within the therapy

experience. Put Yourself in My Shoes describes the nature of therapy encounters over

time. Participants value individualized therapy relationships that are characterized by

an ethic of caring. Sub-themes that emerged include feeling cared for and let me be me.

Each of these sub-themes gives voice to the concept of respect and what is a respectful

therapy experience.

In the following chapter I will discuss each theme as it relates to the literature in

general and to occupational therapy in particular.

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CHAPTER 5

DISCUSSION

Interpretation of this research is a weaving of the existential themes of lived

space, lived body, lived time, and lived human relation; and theories generated in the

current literature of cultural communication, health communication, and client-centered

care. An interpretation of the occupational therapy experience of clients who were

racially or ethnically different from their therapists is presented. The four fundamental

existential themes identified by van Manen (1990) are used to guide interpretation of

themes identified in this study; existential themes of lived space, lived body, lived time,

and lived human relation, van Manen writes about lived space as felt space. He states,

"lived space is the existential theme that refers us to the world of landscape in which

human beings move and find themselves at home" (p. 102). Lived body is how we

experience physically or out "modality of being" (pg. 104). Temporality or lived time is

subjective time including the sense of past, present, future. Relationality or lived other is

how we are in our shared space with others. Although all of the existential themes are

supported in this research, most key to this discussion are the existential themes of lived

body and lived human relation. This chapter also highlights the ways in which the

different themes are interdependent, connected to each other, and flow into each other.

Each theme is interpreted through a vast body of existing literature about cultural

communications, cultural competency, and client-centered care.

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Interpretation of the Phenomenon

Coming to Therapy

This theme is best interpreted by the existential theme of lived time or

temporality. Therapy stems from a client's past experience. All individuals spoke of

some predisposing event resulting in their first therapy appointment. For some

individuals this was the first time they were attending therapy. For others, it was a return

to a past therapeutic experience earlier in their lives. All individuals had expectations of

the upcoming therapy appointment. For most, expectations that were fulfilled led to a

feeling of satisfaction, for others, unmet expectations led to a reassessment of attitude.

Amina illustrates this experience in her story of expectations:

I had a good experience what I want to tell. First time I met them I have no idea
what they were going to do. I don't know what is occupational therapy is. They
help me a lot. Even though the therapy workers, I worked a little bit, thinking
they don't do anything to me. They wanted actually heal body. They want to see
what is going on. They don't want to check the staff, you know, hard mirror, you
know check therapy? They want to check your body. I want them to realize they
doing a good job. I was thinking maybe they're a waste of time. Because they
should say move your arm, you know, "stand up"; show me your man, how they
standing and I go home. And I say, they should massage me and, you know, push
me, and, you know, they have to do something, you know? Help me right away.
But they didn't do that and I finally think it was not right to do that, the therapists.
They have to see what is my diagnoses, what I need help in, you know? To assess
my body where has the more problem than other. And they helping me a lot.

The participants expressed dissatisfaction with their lives; either due to their experience

of pain, or their hope to catalyze change to permit more function, such as better using

one's hand, or being able to hold one's baby. Temporally, this period was experienced as

a time of unknown transition. It was a time of uncertain futures. Participants come to

therapy experiencing the body (lived body interpretation). As stated by Merleau-Ponty

(2006) "the consciousness of the body invades the body, the soul spreads over all its
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parts, and behaviour overspills its central sector" (p. 87). Merleau-Ponty goes on to write

of two distinct layers to our body; the habit-body and the body at this moment.

Participants in this study described a 'disconnect' between their habit-body and their

body at this moment. They described living in a body that hurts. Those living in a body

that hurts and who sought therapy from an outpatient clinic specializing in the care of

chronic pain, described feelings of worthlessness and frustration. Smiley stated, "I felt

like half the person I was because of the injury". Missy said, "I was just a waste". And

another descried the tacit habit-body that becomes noticed when injured, "when we lose

some of our health, you know, muscle weakness or you know, some deficit, we really

feel the reality". Kottow (2001) applies Merleau-Ponty's belief that incongruence

between the habitual body and the actual body lead to change in being-in-the-world when

we support use of much more caring than curing approaches by health professionals. He

states, "These major adjustments to profound changes in the experienced and in the

performance of the body require an hermeneutic understanding much more naturally

focused by caring attitudes than by curing efforts" (p. 57). He goes on to say, "care is an

essential and primary quality of interpersonal relatedness". It is clear that lived body and

lived other are connected existential themes illustrated by this research.

Worry and Concern is the sub-theme that expresses the tension associated with

this place of transition. Participants used words such as "worry", "scary" or "distress"

when describing this time. These findings were similar to those found in nursing when

eighteen individuals receiving regular service from a heart clinic were interviewed using

semi-structured open-ended interview questions and a grounded theory approach to

analysis (Clementi, 2006). Participants in this study also used words such as "worried",
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"fearful" and being "afraid". Participants who had prior experience with occupational

therapy used words such as "nervous", "vulnerable". To the listener these words call up

feelings within the body associated with anxiety; body feelings such as sweaty palms and

rapid breathing.. The worry and concern expressed by the participants was felt in the

body.

In part, successful resolution of this period of anticipation and bodily disconnect

occurs with Being Greeted. When participants were greeted in a warm and friendly way,

they were able to enter and engage in a satisfactory therapy experience. All participants

in this study described satisfactory therapy experiences. Participants who entered therapy

in adulthood clearly remembered and described their first day. Those who had received

therapy intermittently across their life span described their first days in a new therapy

episode as well as more overall ways of being. Each perspective begins with a new

interpersonal clinical encounter between the therapist and the client.

Although most disparate when therapist and client backgrounds differ greatly,

most literature on intercultural communication in health care emphasizes the patient and

physician dyad and the need for cross-cultural connecting across these roles (Institute of

Medicine, 2002; Rosenberg, Richard, Lussier, & Abdool, 2005; Swenson, Zettler, & Lo,

2005). Most physicians are believed to be disease-focused whose communications are

directed toward solving problems presented by the client. When an encounter is patient-

centered it is believed to be focused on the patient's agenda and an explanatory model of

why the clinical encounter is necessary (Rosenberg et al.). Fitzgerald (1992) describes

three cultures involved in each interaction; the personal culture of the patient, the medical

culture, and the personal culture of the health care provider. In patient-centered
encounters, the health care provider does not disclose and tries to minimize influence of

personal culture (Rosenberg et al.). Central to all clinical encounters includes the

following elements: expectations of both the professionals and patients, how the actual

time is spent, the trust that exists between professionals and patients, and the context

affecting their nature (Dieppe, Rafferty, & Kitson, 2002).

Each clinical encounter begins at a set point in time, characterized in this research

by the theme, Being Greeted. Kottow (2001) writes of the caring moment as originally

philosophized by Levinas as the ethical moment in an interpersonal encounter. This is

the moment when a person presents themselves as one who needs protection and the

other responds to provide such protection. Kottow contends that this moment of care

emerges simultaneously between two people and states, "Care is at the core, it is the

essential bond any two people create and it gives them substance as persons who have

accepted the call to take care of the other" (Kottow, pg. 58). Ethics of health care direct

that the relationship between provider and client be a fiduciary one whose purpose is to

benefit the patient. As applied to the participants in this study, the individuals present

with a need and the therapist responded with caring versus curing manners. Missy

clearly illustrated the importance of the greeting in her story of her first day of therapy.

When I first went in I was [pause] nervous and everything. Like, are they going
to torture me and all this and that and get mad if I can't do it and stuff like that?
But it wasn't like that. They was so nice and sympathetic with me and stuff,
[pause], first I thought of like, is it just me or is it everybody who walks through
that door, they treatin' the same way! Everybody with a smile or 'hello' and
everything else so it's real nice. And even they have, they like if you want coffee
or whatever, cappuccino, they got a little bit of same. It was just nice. I liked it.
Like I said, I would go back just to be going! Yup, it was nice, it was really nice.

Participants voiced the importance of being welcomed into the therapy

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relationship with caring. This was perceived as being treated respectfully in a friendly

and kind way.

Participants expressed the feeling of being welcomed through existential themes

of lived body, time, space, and lived other. Lived body was expressed through

expressions of relief and joy. When one participant spoke of his observations of others

receiving care stated:

It seemed like that was more or less, them coming there was a relief for them, an
outlet. That's what it appeared to be to me. To me it was an outlet so I know it
had to be that to other people.

Another participant voiced his feeling of joy that was a direct result of therapy. He

stated, "by the time I left there, I was laughing and joking and smiling". Participants

presented themselves as people requiring help, and the therapists responded with

friendliness, warmth, and a caring response that was perceived as respect.

Respect was always there. Excuse me, once again- the greeting. The greeting is
respectful. I mean, when I was raised up as a child, my Mom always told me, you
say, 'Hey, how you doin' today? Or, 'Good morning, good afternoon' or
somethin' like that.

All participants described places of healthcare where it had not been that way. Most

participants portrayed the feeling of not being welcomed as feeling routine, "as a peg on a

wall", as not noticing the individual. I believe that at these times healthcare providers

interacted from places of 'curing' rather than 'caring'.

The greeting was also experienced in the lived physical space. Participants

noticed and interpreted signs of welcome through the presence of specialty coffee,

vibrating chairs, and magazines specially placed to offer comfort. One participant

summed it up with the statement, "the atmosphere is so nice".

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Lived time was expressed through statements reflecting the fast rate of perceived

time when in therapy and the willing prioritization of time spent in therapy over other

daily life tasks. Smiley stated,

At first, before I even started goin' I was thinkin'to myself, you know, even if I
had to go to therapy or anything, it's more or less an inconvenience because you
have to schedule your time; everyone has things that they're involved with. I
mean whether it be their little children, or you know, this family, you have to fit
that into your schedule so it becomes an inconvenience. But when I was going to
my appointments I didn't focus on that anymore.

Another participant talked of the difficulty even finding the time to attend therapy. "I

don't have time. I don't have a lot of free time to plenty so I was worried a lot when I go

there." Coming to therapy required that they valued the potential for help enough to open

the time in their busy days.

One participant described her unmet initial expectation when coming to therapy.

She expected that the therapist would interact in a way that would immediately reduce

her pain,

in that you are hungry you order lunch. You are get your lunch right away. That
why I expecting, you know, the first time I met them. You know, there has to be
something right away so I can feel better after hour.

"Lived other" was experienced as an invitation to engage in therapy. Participants

liked it when they felt noticed, when they were greeted with warmth, and when respectful

interactions included some off-color conversation. They felt cared for when they felt

valued as an individual. This finding supports research conducted elsewhere regarding

short-term clinical encounters. Swenson, Zettler, and Lo (2005) investigated patient

responses to videotaped doctor-patient vignettes to identify whether patients preferred

patient-centered or biomedical communication in a typical office visit (less than 20

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minutes in length). Patient-centered communication was characterized by responding to

patient questions, ideas and emotions regarding their illness to reach a common ground

about the illness, its treatment, and patient/ doctor roles. Doctor-centered style of

communicating was characterized by a disease-oriented approach to patient problems and

a doctor-centered approach to decision-making. They found that over twice as many

patients preferred the patient-centered approach to communication. Furthermore they

found that patients frequently wanted to feel respected by their doctors, including the

permission to partake in decision-making aspects of the care.

Rosenberg, Richard, Lussier, and Abdool (2005) used identity management

theory to analyze the relational identity in physician-client cross-cultural health

encounters. They found that immigrant patients and their primary care physicians mostly

characterize themselves by their identity as sick people or as medical providers. The

expected pattern of relationship is that of a person presenting as sick and a heath care

provider responding in a way intended to heal. This finding supports the experience

when new clients come to therapy, presenting themselves in an illness role, and the

therapist responds in a caring way that offers genuine help.

In summary, Coming to Therapy describes the experience of participants as they

began therapy. For participants the clinical encounter began before they even spoke to

the first therapist. It began when they were anticipating a future that at least in part,

involved the stress of opening time in the day for therapy to occur. Expectations of the

upcoming therapy session were experienced as worry and concern over what will be in

the future (lived time). They presented as people in the sick role. They felt relief, joy

and happiness when they felt welcomed. Being Greeted, describes the experience of
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being invited into a caring relationship (lived other). Participants experienced the caring

within their body, how they experienced time, and the relationships with which they

engaged between themselves, office staff, and therapists. They felt the greeting primarily

within the lived relations and their environment (lived other).

Understand my Culture

Past clients of occupational therapy who were racially or ethnically different from

their therapist wanted to feel as if their culture was understood. They recognized the

different vantage held by the care provider, but held the belief that the therapist wanted

to understand them. Culture was a part of who they were and where they came from.

As stated by Eagle Cloud,

It [culture] helps me, not that I ever forget who I come, where I come from and
stuff, but it helps me remember who I am. It also helps me remember my
purpose, my sole purpose in life. You know, I'm not just Eagle Cloud, person
with FASD, I'm Eagle Cloud with culture, values, and dreams and visions, you
know [italics added].

People learn who they are, in part, through culture. As identity, culture provides an

orientation that individuals internalize and share across a group of people (Kottak &

Kozaitis (2003). The shared knowledge, values, and experience associated with culture is

shared across a group of people and was referred to as "my people". The very 'being' of

people is shaped by the culture in which they are situated (Watson, 2006). This theme is

similar to findings when fourteen women of diverse racial/ethnic backgrounds, ages,

educational levels, and insurance coverage were interviewed to learn their perspectives of

health care. This grounded theory study found that knowing and being known by the

healthcare provider was one of three major themes when analyzing the client/ provider

relationship (Tluczek, 1999).

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People have multiple identities. As stated by Eagle Cloud, "It's different for

some people because you have two battles. You have the disability and then you have

the cultural". Later in the same interview he stated,

You know, I mean, you know I used to get mad sometime and say, '[Mom] why
do I have to be different plus have a disability? Why do I have to be Native
American plus have a disability? It's challenging enough being Native, why do I
have to have a disability to go with it?

In this study, the majority of participants referred to their disability or patient identity

more than their race or ethnic identity. The reason for the therapist-client relationship

was to become healthier or to participate more in their everyday lives. The context of the

relationship may have drawn upon the patient identity more than the ethnic connection to

race. Suzy expresses this when she described her opinions about therapists trying to act

ingenuously in order to find ethnic common ground.

I just like them cause they just are themselves and that's, at least, that feels more
genuine than you trying to act like you think I want you to. You know, and that's
also not a place to, I don't think to make a big deal of the fact that you are a
person of color. There's no reason for use to have conversations about it. We see
that, we know that, so you just respect me and I'll respect you and we'll be fine.

The reason for the therapy relationship was to focus on healing, not to focus on race

relationships. Smiley agrees saying,

when you go to a place, an occupational therapy place that that, a place for
therapy, you know, a lot of people, they just want their problem fixed and that's
initially what they're focused on. So they may not even notice [that there are no
Black doctors or therapists] right away, you know. Everyone's different.

Missy strongly believed that having a therapist of her race may have resulted in poorer

quality therapy.

It might have been [better to have an African American therapist], but then again,
it might have not. I don't know. I really don't know. Because some, I'll say,
some of my culture people, they tend to, you know, try to, I guess, down the other
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or don't work with them well or stuff like that; have the attitude toward them that
they can't do stuff like that.

These participants identified more with the patient role than with an identity associated

with their race or ethnicity. This finding is supported by previous research. Blanche

(1996) suggested that a clinician's culture may be more of the group they represent than

the group to which they think they belong. This means that although a clinician may

identify within a particular ethnic group, the patient will likely view the clinician not as a

member of the ethnic group, but primarily as one belonging to middle class, western

medical culture. Blanche studied the case of ethnic congruent therapist-client dyad and

found that although the therapist believed they were "like" their patient in values and

beliefs, in actuality their culture was more representative of the Western health care

worker. Kondo (2004) similarly found that of a Japanese therapist-client dyad the

primary culture affecting the relationship was western medical culture. Yet clients

wanted their culture to be understood. In this study, the participant from Somalia wanted

the therapists to understand why she did not want to receive therapy in the pool with men.

Eagle Cloud wanted to retain his beliefs without being pushed away from his culture.

I've had therapists who have tried to really push me away culturally, away from
my culture. You know, try to get me to believe in their cultural way versus mine
because they thought maybe their's was more righter because either they weren't
alcoholically involved or into drugs, you know, like my people.

Participants seemed accepting of the cross-cultural relationships they found in therapy,

but wanted their cultural values and traditions respected by their therapists.

'Culture' comes from the Latin word 'cultura' which stems from 'colere' meaning

"to cultivate" or "to till" (American Heritage Dictionary of the English Language, 2000).

Culture serves to cultivate the way a people live. Although many definitions of 'culture'
exist, definitions that seem most pertinent to this study are those that support a social

construction of culture (Blanche, 1996; Mirkopoulos and Evers, 1994; Padilla, 1999;

Pierce, 2003). Iwama (2005) eloquently reinforced this view from the perspective of the

therapist when he stated:

Now we can appreciate culture not only as a trait or a feature embodied in the
identities of ourselves and our clients, but rather as a social process by which our
shared experiences and interpretations of truth (and therefore our values and
valuing of objects and phenomena around us) support ascription and associations
of meaning within occupational therapy (p. 245)

Most of the participants described the strong role played by family in forming

their cultural identity. Suzy repeatedly referred to the long talks held with her mother

about things such as being in a white world and how to negotiate life as a person with a

disability. Eagle Cloud frequently spoke of his Grandmother and how she taught him the

ways of being disabled and needing to advocate for himself. Smiley talked about the

important role played by his mother in teaching him how to behave in new situations.

Amina questioned how she is to do things that she has never done before? All of these

statements suggest the complexity identity of having a disability, being a patient, and

needing to learn how to be in the world.

Culture is a multifaceted influence which is learned in everyday experiences and

influences what people do, what they say, and how they use the things around them

(Levine, 1987). Culture is dynamic and constantly changing (Fitzgerald, 2004;

McGruder, 2003; Padilla, 1999). This study supports the dynamic view of culture; that in

addition to its "complex whole which includes knowledge, belief, art, morals, law,

customs, and any other capabilities and habits acquired by man as a member of society"
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(Taylor, 1871), culture is dynamic and constantly changing. In this research, culture was

being constructed in dyads such as the occupational therapist-client dyad.

See Me Like Anybody Else

Being like anybody else means being "undifferent". Participants expressed the

desire to be "treated like anybody else". Being the same, to these participants, meant

feeling at home, comfortable and respected. Existential themes of lived body, lived

relations, and lived space were evident in participant descriptions captured in this theme.

Lived body was expressed as a level of alertness or watchfulness. Participants used

words such as "looking", "notice" and "watching". When satisfied with what they saw,

they described themselves as smiling, feeling contentment, being happy, and feeling like

a "regular person". Participants experienced the lived relations as humane, not

stereotyped, non-dismissive or rejecting, and not hate. A feeling of respect seems to be a

summative word used by participants to describe their relations. Clementi (2006) found

this same result when she interviewed participants who had experienced hospitalization

due to cardiac disease and identified a core them of being treated with respect. Lived

space was described by two participants as being at home. Smiley stated, "I noticed that

everyone was treated the same, equally. And that made me feel more at home too, to be

able to see other people from different countries to be treated the same way as I was."

See Me Like Anybody Else encompasses the lived body, lived relations, and lived space of

people wanting to be treated equal as clients undergoing therapy.

Participants wanted to be the same in the patient or client role. The context of

therapy was one where race or ethnicity ought not matter; the purpose of the relationship

was to heal, become healthy, or gain skills. According to the sociological labeling
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theory, people in roles are assigned labels. Eventually the label is internalized as part of

identity and individuals learn to act in stereotyped behaviors assigned by society to these

roles (Kottak & Kozaitis, 2003). Parsons (1951; 1966) first outlined the expectations

surrounding illness as including the right to be exempt from normal activities and

responsibilities and the right to be dependent upon others. Obligations associated with

this role included a desire to relinquish the role as soon as possible and requirement to

follow health-promoting recommendations (Parsons). It is the role of the health care

provider to confirm the presence of illness and to direct a healing plan. Suchman (1965)

refined this theory into a five stage model; beginning with when the patient first notices a

problem and progressing to stage five when the person terminates the medical

relationship and resumes as much as possible their former roles. All participants in this

study were at the fifth state and reported on their experiences in stages three (entering

medical care) and four (the dependent-patient role state). They valued feeling part of a

team when making decisions about their care. According to Suchman, the entering

medical care stage is characterized by finding out what's wrong, learning about the health

care system and finding resources to move towards health. Stage two is that of assuming

the sick role. This stage is characterized by help-seeking behaviors, and being

temporarily excused from everyday activities typically assumed as part of roles. All of

the participants voiced adaptations that they made in their life roles prior to initiating

therapy. Two participants spoke of having to stop working at their current jobs, one

participant could no longer perform fully in her role as homemaker, and two participants

sought therapy in order to maintain in their worker roles.

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Participant responses supported stage three and is represented by the theme,

Coming to Therapy. Clients attended the first therapy session because of a health-related

need and, when welcomed into the therapy system, positively experienced coming to

therapy. Suchman's Stage four, the dependent-patient role stage, was characterized by

the client release of autonomy to the physician and with sanctioned expectations to

comply with all recommendations. This stage was not supported by this research and

will later be discussed when interpreting the theme, Put Yourself in My Shoes. Stage five,

rehabilitation or recovery, occurs when the patient releases the patient role. Participants

in this study all spoke of the need for ongoing therapy relationship. Relationships found

in rehabilitation better matched that described in Stage four in which desired relationships

characterized by understanding, equal treatment, and feeling comfortable was expressed

by participants.

Parton's and Suchman's theories give power to health care professionals as the

expert in knowing what is best for clients to become healthy. Although this theory has

been widely accepted in health care, it is difficult to directly apply to the participants in

this research. These participants all experienced chronic health impairments, making it

difficult to abdicate total decision-making power to health professionals. In addition,

clients wanted health professionals to understand their culture, a task that requires health

professionals to learn about different health beliefs and to be open to alternative ways of

healing. See Me Like Anybody Else suggests a model whereby rehabilitation health

professionals view everybody as having a unique and distinct culture. In their approach

to difference, health professionals can treat everyone the same.

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The theme, See Me Like Anybody Else, is about being treated equally and justly in

the role of client. Participants experienced this in their bodies (lived body), in their

therapist/client relationships (lived other), and in their sense of home (lived space).

Being seen like anybody else enabled these participants to value the continued therapy

relationship

Put Yourself in My Shoes

Put Yourself in My Shoes depicts the "lived relationship" sought by these

participants. Because all participants were satisfied with their most recent therapy

experience, this theme represents their reflections about the experiences and their beliefs

about what ought to be. Clients wanted the level of empathy from therapists that could

be explained as a sharing a lived body. Clients wanted therapists to understand their

experience as if they were the object of the therapy. Eagle Cloud describes what it is like

when a therapist mistakenly believes that they understand his experience.

I think the thing that people forget is each individual lives inside his own body so
he knows his body better than anybody. You know, it's like when somebody, just
cause they work with me that's like assuming that they just stepped inside my
body everyday and said, 'Oh, he's got a broken arm. Oh, his leg is bruised. Oh,
his clothes are- you know. It's like- and when you get into any professionals you
can't ever go into every situation knowing everything.

Participants wanted therapists to strive for an intimate level of understanding that occurs

when you put yourself in someone else's shoes and actually feel their physical pain.

Putting yourself in someone else's shoes requires mutuality across the

relationship. In the practice of occupational therapy, collaboration is considered optimal

when clients and families are respected for their choices; have ultimate responsibility for

decisions about their occupational therapy services; are informed, comforted, and given
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emotional support; participate in all aspects of flexible service; and are enabled to solve

issues of occupational performance (Law, 1998). Although ideal, these practice goals are

often not attained in practice. Rosa and Hasselkus (2005) found that therapists place high

value on the goals they set for clients in rehabilitation.

Only in the face of strong resistance from patients did therapists seemed pressed
to begin to crack the particular by considering patients' definitions of the good
that were different from their own. But when they did, they seemed not only to
serve those patients better, but also to gain more satisfaction for themselves by
coming to deeper understandings of patients and connecting with them in new and
meaningful ways (p. 206).

They found that therapists perceived a struggle when clients did not readily "buy into"

goals proposed by occupational therapists. Schwartzberg (2002) calls this "selling" or

"getting the person [client] to buy in through use of mental imagery and in talking the

task" (p. 46). Although Rosa and Hasselkus believe in the ideal of "collaborative,

patient-oriented practice", they suggest it typically occurs only when therapists feel an

immediate rapport with patients. Nelson, (1997) similarly concluded that although adults

receiving occupational therapy services were involved in goal planning and decisions

about intervention, their involvement varied and it was difficult for them to identify and

describe. These findings suggest that occupational therapy services may be more

paternal and directive compared to the stated ideal.

Although Rosa and Hasselkus (2002) suggest that finding a point of mutuality

when two people widely differ in background may seldom occur, the three participants in

this study who received therapy from the same clinic all reported satisfaction, feelings of

happiness and belief that they were respected. This study purposefully elicited narratives

from people who differed widely in background from their therapist. All participants
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readily reported past healthcare experiences that they did not value as being collaborative

and client-centered.

Feeling caredfor, one of the sub-themes, was strongly voiced by all participants.

These clients felt cared for through their relationship with the therapists and staff. The

feeling of being cared for emerged as an expression of "lived other", experienced as a

mutual relationship with the therapist. The ability to be caring was described almost as

an attribute of specific people, or a group of people. Missy called it "people-person

skills" and questioned its innateness in some people.

I felt like some therapists needs to get more training to have more people-person
skills. I know, I'm not sayin' to really reak down and sympathize with, you
know, like, you're in that person's life or whatever, just, you know, feel some
kind of compassion for that person or somethin'. Not to be cold-hearted, cold or
somethin'. You know, you feel the cold vibes by someone who's just like that.
Be more open and friendly with their clients and stuff.

Eagle Cloud experienced caring when he felt the therapist was supporting and coaching

the development of new skills.

I want somebody [occupational therapist] to be just as confident as I am, if not

more confident. But in the long run, that's a, when they treat me and do what
they can to help me, as far as occupational therapy, that they feel like they have
succeeded rather than failed.

Smiley even experienced an institutional culture of caring at the facility where he

received occupational therapy.

They went beyond that [just a job] and they wanted to keep people happy because
not because they just wanted them to be happy, but because they got enjoyment
out of that. And everybody was on the same page, the same sheet of music.
Everyone was tryin' to make sure like I said, that they became close knit, that
they worked as a team, and that wherever someone was fallin' short on a certain
day, someone else was probably come in and give a hand to make sure it was OK.
 Caring has been described as a "transcendental feature of interpersonal relations"

in the context of health care. It is dependent upon the awareness and concern for the

vulnerability of the client. Care is required to nurture and heal the "lived body" through

the provider's intention of doing good (Kottow, 2001). The ethic of care has included a

respect for the client's autonomy to make choices, maximize benefit and minimize harm

(Institute of Medicine, 2002c). Caring has been associated with an openness in

interpersonal relations (le Roux, 2002; Rosa & Hasselkus, 2005; Wilson, 2000).

Schwartzberg (2002) similarly describes a process used by occupational therapists to

engage or connect and create a holding environment with their clients. Her theory

suggests that trust is the core to caring and is conveyed by "being empathic and truly

showing regard for the person" (p. 40). In her work studying novice and experienced

therapists, experienced therapists could empathize in a way that returned control to the

client. This research suggests that mutual regard within a client/therapist dyad occurred

when the client felt that the therapist was trying to put themselves in the shoes of the

client in a way that supported client autonomy, was culturally sensitive, client centered,

and operated from an ethic of caring.

Let me be me is the second sub-theme of Put Yourself in My Shoes. Let me be me

represents the autonomy sought by participants in the occupational therapy process.

Study participants perceived a permission to be and become themselves when the therapy

was delivered at their level, paced to meet their needs and adapted to their learning styles.

This sub-theme expresses the "lived-body" experience of being in therapy. As people

adjusting to chronic conditions, all these participants were continuously adapting to

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changing bodies. Two of the participants specifically spoke of unanticipated learning of

new ways of being in their body.

Eagle Cloud: I know for me, receiving OT is like me getting the ability to learn
me as a person and why I need what I need. And how I'm going to benefit. It
might seem frustrating in the end because you're getting what you need to help
you survive and getting what you need to help enhance your, in some form,
enhance your disability or attend to your challenges. It's still going to be a
challenge, but it's going to be a little bit enhanced and it's not going to be as hard
to deal with.

Smiley: They definitely educated me! I mean there was a lot of things that I did
not know. I mean, you know, I mean like different jobs that I worked at they told
us about lifting and things like that, but just, I mean, the way you sit, your
posture. When I left there, it helped me, believe me. It helped me a lot. I mean
I'm carrying this with me for the rest of my life. And, like I said, there's a saying
that nothing happens for no reason at all, it's not just coincidence, nothing just
happens.

Rates of learning differ for each individual. Participants valued when the pace of therapy

adjusted to meet individual needs.

Missy: They take their time and if it's too much for you they slow it down and
stuff like that. They explain everything to you as you're doing it. And what the
reason is you doing it and all that stuff. So that was really helpful.

Learning implies a mutuality and intersubjectivity between client and therapist. The

therapist had the expertise to offer in a subject matter that is valued, meaningful, directly

applicable to the client's needs, and communicated as a client/ therapist dialogue.

Smiley: When someone suggests somethin' to me rather than tellin' me what to

do it's a whole different world. And suggestions make things or break things.
When you tell someone what to do and me being an ex-Marine myself, I can tell
you, I hate it when anyone tellin' me what to do, man. Suggestions. I say
suggestin' somethin' you know and also let 'em know that what could be the
result of not doing this an dhow in the long run how it would could deteriorate the
muscle, destroy somethin', you know how it could be long-term arthritis,
whatever the case is. You make a suggestion, lot of time, nine out often times,
they'll say, 'Oh, you know, I probably need to do that'.
 141
Let me be me was also experienced when therapy activities were at the right level

for an individual's skill set. Being at the level of the client implies that tasks asked of the

client in the context of therapy are at the "just-right" level of challenge to foster a

successful outcome. Csikszentmihalyi (1990) presented a model of 'flow' theorizing that

when a person is presented with too great a challenge anxiety results. Likewise, when a

person is presented with too little challenge, the result is boredom. He postulates that

people are most happy when in a state of flow which he defines as being totally engaged

in an activity. Total engagement in an activity is theorized to result in a state of

timelessness or "lived time". Smiley captured this sense. "You know, even though I got

the full therapy it didn't drag or, I never remember a time of it draggin' it went so fast

every time I went there!" Therapy was perceived to be more fun when intervention was

directed at the right level of challenge for the individual.

Participants did not feel permission to be themselves when they perceived care as

if they were "a peg on a wall". These were therapy experiences where participants felt as

if they were "left to the wolves", unattended, too routine, and lacking individualized

attention. This finding is consistent with one other qualitative study of client perspectives

in health care (Clementi, 2006)

When participants felt permission to be themselves they voiced a "lived space"

sense of being at home. Being at home is a place of safety, where one can truly be

oneself, accepted for being oneself. Bruner (1987) described home as "a place that is

inside, private, forgiving, intimate, predictably safe" (p. 25). Home is typically thought

of as a safe and protected place (Reid, Angus, McKeever, & Miller, 2003; Roush & Cox,

2000; Swenson, 1998). It is familiar. Home is also a place that is tightly integrated into
beliefs about health and well-being (Roush & Cox, 2000). Feeling at home indicates the

intimate level of being oneself within the therapy relationship and within the therapy

service. The participants in this study clearly experienced their therapy in this manner.

Put Yourself in My Shoes is a theme that described how participants envisioned

desired occupational therapy service. Feeling cared for is a sub-theme that portrayed the

nature of the relationship, the "lived other", that participants desire. Caring is an ethic of

wanting to help another while maintaining the central role played by the client in

planning and managing strategies designed to make things better. Let me be me is an

expression of the autonomy and individuality desired by participants. The participants in

this study wanted to be cared for as individuals, with unique needs.

Implications for Occupational Therapy

Culture is embedded within and influences the therapy encounter. Fitzgerald

(1992) asserts that every clinical interaction integrates at least three cultures; that of the

client, that of the provider, and that of the primary medical system. A fourth culture is

believed to be present when non-Western backgrounds are involved, the traditional

medical culture. In this study, clients were aware of their race/ ethnicity and their

difference from the dominant white Western culture of the health care setting. Suzy

recognized this with her search for therapists and staff of color.

.. ..but for most of us we seen it [white therapy staff] for so long, I don't want to
say you get used to it, but you just know that that's just how it is. So while you
may not live it, you understand it.

Later in the same interview she spoke again of the lack of non-white therapy staff at the

clinics where she received service.

 143
Whenever I go anywhere I end up saying in some form, you know, have any staff
here, how come you don't have any OTs who are [of color] ? [pause] But, it just
was something that I went into [receiving occupational therapy] knowing that that
it would probably be the case. If it had been different than that, I would have
been shocked!

Smiley voiced similar thoughts about the lack of Black therapists.

I can probably go on about things but the thing about it is me being a Black male
and being in the environment where there weren't any Black doctors or therapists,
now honestly, me being raised, like I said, I was raised where I didn't ever see a
color or anything, but well, like you say, like I said earlier, you can notice, you
know. You notice that I mean you go out to a restaurant, you go someplace, you
notice. Oh, I'm the only Black person in here, or vice versa, you know? And
honestly, with the stereotyping there's a lot of people, you know, they just want
their problem fixed and that's initially what they're focused on."

Eagle Cloud described similar sentiments as Suzy and Smiley. Although he says, "I'm

going to open up more to somebody that's of Native American descent like me." And, "

it's really hard to teach somebody who doesn't have patience or tries to overpower your

beliefs with their beliefs", he later discusses the need for occupational therapists to have

the skills of interacting with a wide range of clients.

.. ..its frustrating enough when we need occupational therapy, you know, and then
to try to find somebody who quote unquote fits our cultural standards. If you
have any, some of us don't. I mean, I don't. I just want you to seem as both
Native American and you know, I'm not going to expect you to speak Ojibway,
but I think it would just, plus it makes business better for the occupational
therapist too because you're not playing ping pong, you're not playing hot potato
with you clients so you're able to work with them and your'e going to give them
satisfactory service.

Past-recipients of occupational therapy noticed the environment in which they received

therapy. They noticed the absence of therapists and therapy staff who looked like

themselves and they noticed the care received by other people of color in the therapy

clinic. As Smiley stated, "Like I said, with me I noticed right away. But it didn't, it

wasn't a problem for me."

 The majority of clients prioritized the functional goals of therapy as the primary

measure of effectiveness. They noticed and were aware of the lack of non-white therapy

staff, but felt that racial or ethnic background should not affect the quality of received

therapy. Smiley noticed the absence of Black health care providers, but not to the point

where it bothered him.

When you to a place, an occupational therapy place like that, a place for therapy,
you know, a lot of people, they just want their problem fixed and that's initially
what they're focused on. So they may not even notice right away, you know?
Everyone's different. Like I said, with me, I noticed right away. But it didn't, it
wasn't a problem for me.

Missy reinforced the trust placed in health care professionals to deliver specialized

expertise. When asked if two people who share a similar cultural background would

provide better therapy, she replied,

No. I don't think so. Because it depends on the individual. Cause my therapist
that I had it seemed first; at first when I was going to the other therapists and then
when they said 'try this' and I'm like to myself, 'here we go again'. They'll
throw me off ot myself somewhere and expect me to do it right and everything.
But they didn't They [pause] worked with me.

For Missy, individualized therapy, provided at a just-right challenge was important to

how she identified 'good' therapy; not whether she was cared for a therapist of a similar

race.

The Western health care setting was not always supportive of ethnic beliefs about

health and living. Amina, past client who was also a first generation immigrant,

described concern about the clash between the Western way of doing therapy and what

she expected from her background. Amina talked of discomfort over changing clothes

for therapy and participating in pool therapy, a common therapy intervention when

working with people in pain. Amina says,

 145
I don't feel comfortable with other people, you know? [pause] I come with too
many clothes and you know, taking off my clothes and a little, [the therapists]
think I understood it all. They don't understand my culture. They think that way,
but I don't think therapy is informed of my ways.

Amina spoke of her discomfort with pool therapy; discomfort to the point that she was

unable to benefit from this therapy strategy because of her beliefs about interactions

between men and women. Men and women were scheduled together to receive pool

therapy, an unacceptable experience for Amina. Although the clinic where Amina

received therapy offered to schedule a time for only women to receive therapy in the

water, the late-afternoon time was incompatible with her busy life as wife and mother of

six children.

Lots of people were worrying about the water. They say, you know, I don't want
to associate with men. And I do too. I ask them, I want to go to the pool, but they
call a specific time. I have to come 5:00 which is the time all my family come
home. And it wasn't working for me. For that reason, I quit. I go back to the
land machine [dry therapy exercise] and many ladies don't want to see man.
Sometimes they are not happy with other ladies, as they say, you know? They
feel, maybe more embarrass if you know someone they don't understand their
culture. And, of course, maybe they cannot explain who they are and what they
ask.

This study supported the theory of multiple cultures interacting together within each

clinical encounter. Culture, as a part of each client, interacts with culture of the health

care provider and culture of the health care facility to create a health encounter.

I suspect that therapists primarily are unaware of the significant influence of

culture in each therapy encounter. Current estimates are that 86.2% of occupational

therapy practitioners are white (non-Hispanic) compared to 76% of the United States

population (American Occupational Therapy Association, 2006). This means that the

vast majority of occupational therapists work only with other therapists who belong to the
 146
population majority and who share dominant norms, values and beliefs. It is essential

that occupational therapists question, listen, and respond to all of their clients, but

especially those clients who are the most different from themselves.

Occupational therapists may be at an early stage of early recognition of the effects

of difference. Dr. Larry Purnell (2000, 2002) offered a model used extensively by the

nursing and physical therapy disciplines to describe care that is culturally competent

(Lattanzi & Purnell, 2006). In this model Dr. Purnell writes of a non-linear "concept of

cultural consciousness" used to identify the level of cultural consciousness of the health

provider. The four key concepts within cultural consciousness include 'unconsciously

incompetent', 'consciously incompetent', consciously competent', and 'unconsciously

competent'. The goal of this model is to be 'unconsciously competent', a state when one

is aware of personal values, beliefs, practices and cultural differences amongst people

(Purnell, 2002). 'Consciously incompetent' is the state that occurs when one is aware of

a lack of knowledge in another. Consciously competent' is when a health provider seeks

and obtains information about another's culture, verifies generalizations about the client,

and providers culturally specific care. Participants in this study wanted to experience

consciously competent care by their occupational therapists.

This stage model of is reminiscent of the Johari Window (Luft and Ingham, 1955)

that is commonly used to represent information within or about a person in relation to a

group. The Johari Window is comprised of four quadrants based upon whether the

information is known to self or known to others. Information known to self and others is

called in the 'arena' and most comparable to 'consciously competent' of the Purmell

model of cultural competence. Information that is not known to self, but known to others
 147
is considered to be within a blind spot. Much of the information identified by

participants in this study may be considered in the 'blind spot' of the occupational

therapist. Recipients of occupational therapy notice the environment, the level of

respect directed toward other clients, and the awareness of health beliefs. Models such as

these may be used to increase conscious awareness by the therapist of those actions

perceived by clients as culturally competent.

Chapter six will reflect upon study limitations, thoughts for future research and

provide advice for occupational therapy practitioners.

 148
CHAPTER 6

THOUGHTS FOR THE FUTURE

This chapter offers thoughts for the future of cross-cultural occupational therapy

research and practice. This chapter begins with an analysis of study limitations as a

starting point for future planning.

Limitations of this Study

There are several limitations to this study. Text for this study was dependent

upon interviews to provide clear descriptions of cross-cultural occupational therapy.

These interviews became text used analysis and interpretation. This study is only as rich

as the initial interview. As a novice phenomenological researcher I learned of my

tendency to 'lead the witness', despite conscious effort not to do so. To counter this

tendency I used text drawn from those portions of the interviews where participants

offered open descriptions of the phenomenon. Validity of the study is strengthened when

the researcher brackets past biases and assumptions enabling an openness to descriptions

of the phenomenon. Despite efforts to make conscious my prior biases and beliefs, my

greatest depth of understanding came when I was interviewed by another about my own

biases and assumptions regarding cultural competence and occupational therapy. This

interview strengthened the rigor of the analysis and interpretation of this study, and so I

assume that if the bracketing interview had occurred prior to initial participant interviews,

the text may have been richer and carried more depth of understanding. Participants

provided text from multiple viewpoints regarding the phenomenon of cross-cultural

occupational therapy. The participant who was also an immigrant provided the most

degrees of difference between therapist and client in terms of race, background, language,
and non-western beliefs about health. Although this study may have been strengthened

by more immigrant interviews, repetition in theme was also heard. Even with maximum

difference, people wanted to be greeted, welcomed, interacted with respectfully and with

sufficient empathy to feel as a unique and cared-for individual.

I question whether my own whiteness was a limitation of this study. I may have

represented the 'white privilege' associated with being a member of the dominant group

of health care workers. I attempted to dispel this possibility by disclosing my role as an

academic occupational therapist compelled to enhance the cross-cultural capacity of

occupational therapy. Most interviews adopted a tone of increased comfortableness and

intimacy upon this disclosure. I also suspect that my middle-aged, grey haired female

appearance helped to dispel non-disclosure tendencies of participants.

It was difficult to solicit volunteers for this study when recruitment depended

upon referral by an occupational therapist. First attempts to recruit participants depended

upon therapist identification of possible participants who met basic study criteria;

racially or ethnically dissimilar from their therapist, discharged from occupational

therapy within the past year (three years after change in subject selection criteria), and

having sufficient English skills to permit interviewing in English. During the one year of

regular efforts to recruit participants by occupational therapist identification of potential

participants, yielded no potential subjects. Therapists from the one large Midwestern

urban medical center were unable to identify any potential participants for this study.

When recruitment for this study was redesigned targeting past clients directly,

participants volunteered for this study. This research depends upon the narratives of

those who volunteered to provide their stories and describe their therapy experiences. I
 150
can only wonder at the large numbers of eligible participants for this study who were not

recruited by their therapists. Despite the many reasons which likely contributed to the

lack of recruitment effort by therapists, I believe that one possible reason is because the

therapists did not want to make known to self what others might already know. The

information about cultural competence at their facility remains unknown and thus the

therapists do not have to deal with the effects of information becoming known to self and

others.

Future Research

This research empowers the voice of participants. More participatory research is

needed to ensure that the voice of health care recipients contribute to the formation of

theories defining culturally competent care and the creation of processes to evaluate the

presence of culturally competent care. Biases associated with western medicine will only

be overcome when research represents the voice of all recipients, especially those who

differ from the health care professional. This study interviewed people who primarily

had received occupational therapy service because of reduced life participation, a result

of having bodies that hurt. People unhappy with their life participation because of other

reasons may have a different therapy experience. For example, parents of children with

special needs, people who are homeless, or people with mental health conditions may

experience occupational therapy differently than reported in this study. For this reason, it

is important not to generalize these findings to all clients of occupational therapy. It is

also important that future research look at the experience of both the recipient and the

provider. If occupational therapy at an individual level is experienced as the cross-

cultural relationship between client and provider, then it seems necessary to understand
 151
the partnership, or the experience of the relational dyad. Why does one partnership seem

to 'work' and another 'not work'? Do occupational therapists recognize when their

clients are fully participating in therapy and when they are not? Do clients and therapists

both identify the same critical incidents or indicators of a successful relationship?

Lastly, how different is the therapy experience for clients who are racially or ethnically

different from their therapist compared to clients who share similar backgrounds and past

experiences? Do all people seek the same respectful, compassionate, and caring

experience regardless of cultural differences? Research needs to support ways of

measuring effective culturally competent occupational therapy services. In an era of

evidence-based practice, empowerment to change, in part, occurs through accurate

feedback mechanisms to identify gaps between what is and what ought to be. Given a

goal of providing culturally competent care, performance indicators systematically

analyzed should reduce health disparities. Lastly, this research only looks at culturally

competent occupational therapy service delivery. Culturally competent care is only one

aspect theorized to reduce health disparities. Program outcome research and larger

epidemiological studies are needed to compare the health outcomes of clients who have

received culturally competent services from those who have not.

Advice to Occupational Therapy Practitioners

If occupational therapy is to define itself as operating from an ethic of caring, it

ought to commit to this philosophy and approach to practice. Caring is more than

problem-solving rehabilitation problems. Caring extends to the very nature of the

relationship between the therapist and the client. To care means to feel a deep empathy

for the client and their life situation. It means having a willingness to share the "lived
 152
body" and the "lived other" of the client, to intentionally open oneself to the pain of

another's life. One way to be more caring is to position the client at the center of the

experience. Client-centered occupational therapy care means being open to who the

client is, respecting the very being of the client with a focused intent to enable everyday

performance. Clients present themselves with needs, uncertainties and worries. Service

providers are responsible for the invitation to begin. Therapists may encourage open

discussion about expectations of therapy to establish a culture of openness and inclusivity

early in the therapy process. Caring is first noticed in early interactions with the client,

through invitations into physical spaces and through greetings and welcomes. Systems of

care invite people to participate by their scheduling process and their ease of access.

"Lived spaces" that lessen worry and stress are likely to foster a sense of comfort within

clients. During episodes of care, service providers ought to vigilantly maintain just and

equal systems of care. Lastly, therapists ought to examine their own openness to cross-

cultural communication. Clients recognize those with whom they feel comfortable and

comfort should be a legitimate outcome of occupational therapy. When clients feel the

intimacy of home, they feel a comfortableness that is desired in therapy. Being in

therapy is an interactive relational experience for clients.

Summary

This chapter discussed limitations of this study in the context of how this research

can contribute to a growing body of knowledge about cross-cultural health care to reduce

health disparities. Recommendations for future are provided at the individual,

organizational and population levels. Lastly, recommendations for change is offered to

occupational therapy practitioners.

 153

CODA

I thought I would find examples of racism and discrimination in the practice of

occupational therapy. I am grateful that I did not. Instead participants talked of respect.

I also thought that I would learn specifics about white privilege and again, I did not.

Participants voiced the importance of being understood, being treated with respect, and

being cared for with empathy and justice. I thought I would learn about biases and

stereotypes associated with specific ethnic groups. Again, I did not. Instead, I learned

about client-centered care and occupational therapy practice described as a partnership

between client and clinician. I thought that clients who differed the most from their

therapist in skin color or language would have the most difficulty 'connecting' in therapy.

I did not. Instead I learned that clients who most visibly differ from their therapists may

best describe the relationship that ought to characterize each and every client and

clinician dyad. I now believe that every client/ therapist partnership is a cross-cultural

experience and that this research exposed key characteristics of this highly personal

relationship.

According to Merleau-Ponty (1962) phenomenology is both a methodology and a

philosophy. I learned how phenomenology is a methodology by conducting this research

but I transformed with the realization that phenomenology is a philosophy.

Phenomenology taught me about being open to the unexpected and the expected; to

suspend judgment so that true meaning can reveal itself. I find myself anticipating new

meanings of everyday life and orienting to the daily experiences with a heightened sense

of anticipation. Phenomenology as a philosophy speaks to me as an occupational

therapist. I believe that the tenets of intention, openness, listening, elucidating meaning,
 154

and synthesizing structure describe an approach to practicing occupational therapy that is

client-centered and culturally competent.

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 170
Appendix
 June 6, 2006

Cynthia McGill, CIP

Executive Assistant
IRB

Dear Dr. McGill,

I would like to amend the IRB proposal for the study titled, "Cultural Competency in
Occupational Therapy: The Client Experience", IRB Code Number: 0512P77786. I would like to
broaden the sample.and change recruiting methods while keeping the same population intact.

The current IRB approves purposeful sampling from past recipients of occupational therapy who
meet the inclusion and exclusion criteriafromthe Fairview University Medical Center. The
study was approved on January 20,2006 with final approval granted on February IS, 2006. As of
today, June 6, 2006, the Director of Occupational Therapy at Fairview University Medical Center
has identified no potential participants. The Director states that current therapists are aware and
supportive of the study, but have not identified names of potential participants. The Director of
occupational therapy is unwilling to recruit a sample in a different format.

Please approve the following changes to the IRB:

1. Inclusion criteria. Change to include those who have been discharged within the past three
years of initial contact instead of the stated one year of initial contact.
2. Broaden recruitment from recipients of occupational therapy only at Fairview University
Medical Center to include past recipients of occupational therapy from non-Fairview service
providers. I would like to use the same script to contact directors of agencies/organizations
known to serve non-majority populations and agencies/organizations known to serve people
with disabilities. Examples of such organizations include the Institute on Community
Integration at the University of Minnesota, the Urban Health Community Education Liaison
for the Academic Health Center, the Open Cities Health Center, and IMPACT Physical
Medicine and Aquatic Center. In all cases the same script would be used (attached) and the
organization would contact potential participants requesting that the potential participant
contact the principal investigator. A revised consent form with Fairview University Medical
Center language removed is attached.
3. Broaden recruitment to include those potential participants who independently and
voluntarily contact the principal investigator requesting participation in the study. All scripts
and consent forms would be those lacking die Fairview University Medical Center language
(attached).

Please respond to Peggy Martin. MS. OTR/L at n u n '' /.iimii.^fii or by phone at 6-4358.
Thank you for considering this request.

Peggy m. Martin

CC: Rosemary Park (advisor)

 UNIVERSITY OF MINNESOTA
172
fiiin Cities Campus Research Subjeils' Protection Programs <l,.v<. Mail L\/Ue <V.?iJ
l : H
I'Miluutmol Re\ u »• B,w,l: Hum in julriict* ('. ;nmitt,< <MB) ^l •)'">•' Xf'"" " ' ' " ' * ' < ' « ' " «
Insrirutio-ml Animal Car. and I V Ovmit,-, ,IACl V, ZJ' "<'<»"'""'' V r ' / ' s - f
02/15/2006 Umiuapnhs M\S.W>5
612 OiM-iftM
. . . . F\i.x • 612-()2t-(*f>l
Peggy MMaitin iibwuimedu
Occupational Therapy Program ••u-ui.vumn.edu
i.ai^M^'ioa ' http->'nv\vw.resednh.itmti.edu/
M M C 3 8 8
v-bjeavhrn
Minneapolis Campus
RE: "Cultural Competency in Occupational Therapy: The Client Experience"
IRB Code Number: 0S12P77786

Dear Ms Martin

The Institutional Review Board (IRB) received your response to its stipulations. Since this information
satisfies the federal criteria for approval at 45CFR46.111 and die requirements set by the IRB, final approval
for the project is noted in our files. Upon receipt of this letter, you may begin your research.

IRB approval of this study includes the consent form dated February 14,2006 and recruitment materials
received December 1,2005.

The IRB would like to stress that subjects who go dirough the consent process are considered enrolled
participants and are counted toward the total number oi subjects, even if they have no further participation in
the study. Please keep this in mind when calculating the number of subjects you request This study is
currently approved for 10 subjects. If you desire an increase in die number of approved subjects, you will
need to make a formal request to die IRB.

For your records and for grant certification purposes, the approval date for die referenced project is January
20,2006 and the Assurance of Compliance number is FWA00000312 (Fairview Health Systems Research
FWA00000325, Gillette Children's Specialty Healthcare FWA00004003). Research projects arc subject to
continuing review and renewal; approval will expire one year from that date. You will receive a report form
two months before the expiration date. If you would like us to send certification of approval to a funding
agency, please tell us the name and address of your contact person at die agency.

As Principal Investigator of this project, you are required by federal regulations to inform the IRB of any
proposed changes in your researchtibatwill affect human subjects. Changes should not be initiated until
written IRB approval is received. Unanticipated problems or serious unexpected adverse events should be
reported to die IRB as dicy occur.

The IRB wishes you success with this research. If vou have questions, please call the IRB office at (612)
626-5654.

Cvnthia McGill, CIP

Executive Assistant
CM/egk
CC Rosemarie Park
Twin-CUks Campus Program in Occupational [hetitpy May Mail Cxie *6H
Crntrrfrr Allied Health Proems w7'^'^'V^'f' '^
AcademuH.MC.ntrr Minneapol*. KIN Si4<S
Offk,' « : . « ; 6 - : w
Fax 6I2-621-U9:

November 30,. 2006

Cynthia McGill, CIP

Executive Assistant
[RB

Dear Dr. McGill,

I would like to change the recruitment letter as originally presented in the IRB protocol for the
study titled, 'Cultural Competency in Occupational Therapy The Client Experience", IRB Code
Number: OS 12P77786 to the attached letter. This letter was written by the Fail-view research
administration to be sent to past recipients of occupational therapy meeting initial screening
criteria. A representative from Fairview will conduct the initial screening of past recipients of
occupational therapy, preventing the researcher from viewing nonessential private information.
The proposed recruitment letter includes all information included in the first IRB approved letter
and information approved in the September 27, 2006 appeal I am attaching the following for
your information:

1. original recruitment letter

2. revised letter template for interested potential subjects after screening by Health Care
Provider, Agency Representative (9.26.06)
& IRB 10-24-06 approval of change in protocol
4. Volunteer form

Please
rica respond to Peggy Martin. MS. OTR/L at marti370ff.umn.eduor b> phone at 6-4358
ank \oii for considering this request

7.
Peggy M/'Martin

y\
CO Rosemary Park (advisor) .—--"-'"^
OM'-

6
 September 27, J006

Cynthia McGill, CIP

Executive Assistant
1RB ;N
Dear Or McGill,

I would like IU change the existing IRB protocol for the study titled, 'Cultural Competency in
Occupational Therapy: The Client Experience", IRB Code Number: 0512P77786 to change the
original protocol in mo ways: participant compensation and participant recruitment.

Participant compensation: I would liketocompensate participants for their time by awarding gift
certificates totaling_S50 in value. Participant interviews have lasted approximately 90 minutes
withfollowup interview of similar length scheduled six months later. I believe that their time
warrants this small payment. The original IRB proposal included compensation language and
was reviewed by expedited review on January 20,2006 with the stipulation that compensation be
eliminatedfrombenefit. I believe in error, I interpreted this to be a direction to not compensate
participants. I propose that subjects receive a $20 department gift certificate when the first
interview is completed and one $30 department gift certificate when the second and final
interview is completed. I have already gathered data from one subject and will offer partial
compensation immediately with full compensation following completion of die second interview.
I am attaching a version of the approved consentformwith the changes identified and a copy of
the revised consent form.

Participant fycw//^ffp«/y As approved, potential participants are screened by care-providing

agencies and their internal personnel. These participants are informed of die study and asked to
contact the researcher directly to volunteer for the study. Agencies have reported that some ,. ,
participants are interested and willing to participate in the study but are relqcfrmt (o contact the JjPvt ' • J ^
researcher directly, instead requesting of the health care provider that I contact them. I would like £^j__Z
permission1 ffom the UCB for the researcher to contact these potential participants (via telephone
or letter), already screened by the health care provider or agency representative, to describe the
study, dialogue about the informed consent process, and. if they remain interested, schedule an
interview. The researcher will have seen no private information. I am attaching sample
telephone text and a sample letter that would direct my contact with the potential subject

Please respond to Peggy Martin. MS. OTR/L at rnartijIO^/jininidu or by phone at 6-4358.

Thank you for considering this request.

Peggy Ivf Martin

CC Rosemary Park (advisor)

ADMINISTRATIVELY
APPpQ\(ED
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 175

SOCIAL & BEHAVIORAL SCIENCES APPLICATION FORM IRB Use Only

Version 4.3 [RB Study
March 4, 2005. check hirni-.M.^iV.Irtumm.cdu for the latest version

1. Project Identification and Signatures

1.1 Project Title (Project title must match grant title. If different, also provide grant title):
| Cultural Competency in Occupational Therapy: The Client Experience

1.2 Person preparing this document

Name: Peggy M. Martin Phone number: 612-626-4358
Email: marti370@umn.edu Fax:612-625-7192
1.3 Principal Investigator (PI)
Name (Last name, First name MI): Highest Earned Degree:
Martin, Peggy M Masters of Science
Mailing Address: Phone Number:
1757 Jefferson Avenue 651-690-0877
Saint Paul, Minnesota Pager or Cell Phone Number:
55105 651-295-1191
Fax:

U of M Employee/Student ID: Email:

0919487 marti370@umn.edu
University Department (if applicable):
U of M x.500 ID (ex. smithOOl):
Work and Human Resource
marti370 Education
Occupational Position:
• Faculty • S t a f f [gjStudent** •Fairview Researcher •Gillette Researcher nOther:
**Students are required to submit Appendix J
Indicate the training and education completed in the protection of human subjects or human subjects records (required
for all research. '-Refer to training links at the end of this section.):
• CITI Eg] FIRST • Investigator 101 • NIH Eg) HIPAA • Other
As Principal Investigator of this study, I assure the IRB that the following statements are true:
The information provided in this form is correct. 1 will seek and obtain prior written approval from the IRB for any substantive
modifications in the proposal, including changes in procedures, co-investigators, funding agencies, etc. I will promptly report any
unexpected or otherwise significant adverse events or unanticipated problems or incidents that may occur in the course of this study.
1 will report in writing any significant newfindingswhich develop during the course of this study which may affect the risks and
benefits to participation. I will not begin my research until 1 have received written notification of final IRB approval. I will comply
with all IRB requests to report on the status of the study. 1 will maintain records of this research according to IRB guidelines. The
grant that I have submitted to my funding agency which is submitted with this IRB submission accurately and completely reflects
what is contained in this application. If these conditions are not met, I understand that approval of this research could be suspended or
terminated.
Doctoral Candidate
Original Signature of PI Title of PI Date
UNIVERSITY OF MINNESOTA INSTITUTIONAL. REVIEW BOARD 176

If PI is faculty, stuff or student, u Department head signature is required.

If PI is also the Department Head, provide the signature of the Dean or Division Head.
As Department/Division Head or Dean, I acknowledge that this research is in keeping with the standards set by my department
and I assure that the Principal Investigator hasjnct all departmental requirements for reyiewaml[approval ofjhjsjreseurch.^

Typed[Name ojDept-JHe^adT^rartw ofj^earch Fajrview^or_Direet^of CMN^

Original Signature of Department, Fain Jew, or Gillette Official Date

*Training Links
CITI - https://www.ei tiproBrntn.org/default.asp
FIRST - http://www.research.umn.edu/first/Hnman.Subiects.btni (formerly RCRj
Investigator 101 - http://www.researcti.uiiin.edu/irb/trainina/
N1H- http://www.research.umn.edn/first/HumanSuhiects.htiii
HIPAA - http://www.research.umn.edu/first/AddmonaiCourses.htm

1.4 Co-Investigator(s)
Co-Investigators responsible for. or working on this project should be listed below. Include any individual who will
have responsibility for the consent process, direct data collection from subjects, or follow-up.
Name (Last name, First name MI): Highest Earned Degree:

Mailing Address: Phone Number:

Pager or Cell Phone Number:

Fax:

U of M Employee/Student ID: Email:

U of M x.500 ID (ex. smithOOl): University Department (if applicable):

Occupational Position:
• F a c u l t y • Staff •Student •Fairview Researcher QGiliette Resean:her QOther:
Indicate the training and education completed in the protection of human subjects or human subjects records (required
for all research. *Refer to training links at the end of this section.):
• CITI • FIRST • Investigator 101 • NIH • HIPAA • Other

i
Original Signature of Co-Investigator ! Title of Co- nvestigator [ Date

Name (Last name, First name MI): Highest Earned Degree:

Mailing Address: • Phone Number:

Pager or Cell Phone Number:

!
Fax:

U of M Employee/Student ID: Email: •

LI of M x.500 ID (ex. smithOOl): : University Department (if applicable):

Occupational Position:
• Faculty • S t a f f •Student • Fairview Researcher •Gillette Researcher • O t h e r :
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD
Indicate the training and education completed in the protection of human subjects or human subjects records (required
for all research. *Refer to training links at the end of this section.):
D CITI D FIRST D Investigator 101 D N1H D H1PAA f l Other

Original Signature of Co-Investigator Title of Co-Investigator Date

Name (Last name. First name Mi): Highest Earned Degree:

Mailing Address: Phone Number:

Pager or Cell Phone Number:

i Fax:
•
U of M Employee/Student ID: j Email:

Uof Mx.500 ID (ex. smithOOl): University Department (if applicable):

Occupational Position:
• F a c u l t y CJStaff dStudent •Fairview Researcher •Gillette Researcher • o t h e r :
Indicate the training and education completed in the protection of human subjects or human subjects records (required
for all research. *Refer to training links at the end of this section.):
• CITI • FIRST • Investigator 101 • NIH • HIPAA • Other

Original Signature of Co-Investigator Title of Co-Investigator Date

*Training Links
CITI - https://www.citiproaram.org/default.asp
FIRST - http://www.researcn.mnn.edii/flrst/HumauSubiects.htm (formerly RCR)
Investigator 101 - http://www.research.nmn.edu/irb/training/
NIH- http://www.research.umn.edu/first/IIuniaiiSubieets.htni
HIPAA - http://www.research.umn.edu/first/AddllionalCourses.htm

1.5 Research Staff

Personnel you wish to be included in correspondence related to this study e.g. study coordinators

Name (Last name. First name MI): J Highest Earned Degree:

Mailing Address: '. Phone Number:

|
i Pager or Cell Phone Number:

Fax:
i
U of M Employee/Student ID: ! Email:

U of M x.500 ID (ex. smithOOl): University Department (if applicable):

i

Occupational Position:
• F a c u l t y • S t a f f •Student •Fairview Researcher •Gillette Researcher • O t h e r :
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD

Name (East name. First name MI): . Highest Earned Degree:

Mailing Address: Phone Number:

: Pager or Cell Phone Number:

U of M Employee/Student ID: | Email:

U of M x.500 ID (ex. smithOOl): \ University Department (if applicable):

Occupational Position:
•Faculty • S t a f f •Student •Fairview Researcher •Gillette Researcher • o t h e r :

Need more space for Co-Investigators and Staff? Download an cxira personnel sheet and include it with your
application.

1.6 Student Research

If the PI of this research is a student, include Appendix J filled out by the advisor with this application form and
include the advisor's signature below.
Student Research requires the approval of an Academic Advisor. As Academic Advisor to the Student Investigator, 1 assume
responsibility for ensuring that the student complies with University Policies and Federal Regulations regarding the use of Human
Subjects in research.
Advisor Name (Last name, First name MI): University Department:
Park, Rosemarie Work and Human Resource
Education
Mailing Address: Phone Number:
420D Vo Tech Building 612-625-6267
1954 Buford Avenue S. Email:
Saint Paul, MN 55108 parkxoo2@umn.edu
U of M Employee ID: U of M x.500 ID (ex. smithOOl):
2100148 parkx002
Indicate the training and education completed in the protection of human subjects or human subjects records (required
for all research. Refer to training links at the end of the previous section.):
• C m • FIRST • investigator 101 • NIH ( 3 HIPAA • Other

1
Original Signature of Advisor . Date

2. Funding
2.1 Is this research funded by an internal or external agency?
• Yes. Include Appendix A
£<3 No. Explain how costs of research will be covered:
:
f he studentwin coyer_al] costs of thisstud^
 UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 179

3. Institutional Oversight

3.1 Is this research proposal being r e v i e w e d by any other institution or peer r e v i e w c o m m i t t e e ?

0 Yes. Attach copy of materials submitted for peer review.
E3NO.

If yes. Please select which other committee approvals are required for this research and provide
documentation of their approval:
• Cancer Protocol Review Committee (CPRC)
• Cancer Protocol Review Committee/Non-Therapeutic Interventional Trials Review (CPRCNTI)
C] Conflict Management Review Committee (CMRC)
• University Research Opportunity Program (UROP)
1 I Nursing Research Council
[~l Grant-In-Aid of Research, Artistry, and Scholarship Program (GIA)
n Other IRB, please specify:
^ Other, please specify: Fairview Health System accespts the review process of the University of
Minnesota. This proposal will be reviewed by Research Administration of Fairview Health System as part
of its standard review processes.

Peer review Web sites:

• Cancer Protocol Review Committee (CPRC)
• Cancer Protocol Review Committee1 Non-Therapeutic Interventional Trials Review (CPRC/NTI)
• University Research Opportunity Prouram (UROP)
• Grant-ln-Aid of Research. Artistry, and Scholarship Program (GIA)

3.2 Is this research funded b y t h e N a t i o n a l C a n c e r Institute ( N C I ) or cancer related?

• Yes.
13 No.

4. Conflict of Interest

Federal Guidelines emphasize the importance of assuring there are no conflicts of interest in research
projects that could affect the welfare of human subjects. If this study involves or presents a potential
conflict of interest, additional information will need to be provided to the IRB. Examples of potential
conflicts of interest may include, but are not limited to:
• A researcher or family member participating in research on a technology, process or product owned by a business
in which the faculty member holds a financial interest
• A researcher participating in research on a technology, process or product developed by that researcher
• A researcher or family member assuming an executive position in a business engaged in commercial or research
activities related to the researchers University responsibilities
• A researcher or family member serving on the Board of Directors of a business from which that member receives
University-supervised Sponsored Research Support
• A researcher receiving $ 10.000 or more in consulting income from a business that funds his or her research

University of Minnesota Researchers, please refer to:

hup: ifii ii'/ num.alii ivwnfy policies iicmUiiiic •(.'onllktalTntciwsl.lwiil
Fairview Health System Researchers, please refer to:
i'lip ' in i ir./(//rr/('uy,'ri.r iir<jlrc^i'anii
'.nun. JUi^Lnilliih.'ilu.Lkiiii.'i'^L
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 180

4.1 Do any of the Investigators or personnel listed on this research have a potential conflict of
interest associated with this study?

[X] No. Skip to section 5.

• Yes.
If yes. identify the individual(s):

4.2 Has this potential conflict of interest been disclosed and managed?

• No.
If you are a University of Minnesota researcher, please disclose your potential conflict of interest online for review
by your Department Head and Dean via the Report of External Professional Activities (REPA) at
https://egms.umn.edu/REPA/'
If you are a Fairview Health System researcher, please complete the Fairview Health Services Conflict of Interest
Disclosure forms (http://www.fain'iew.org/prof/research/proceed_forms.asp) and submit the completed forms to the
Fairview Office of Research.
If you are a Gillette Children's Specialty Healthcare researcher, please contact the Director of Research
Administration, at 651-229-1745.

• Yes.
The IRB will verify that a management plan is in place with the Conflict Management Committee (CMC). If the
CMC does not have an approved management plan for this research, the CMC will contact the individual(s) listed in
question 4.1 for additional information.

Final IRB approval cannot be granted until all potential conflict matters are settled. The IRB requires
a recommendation from the CMC regarding disclosure to subjects and management of the conflict.
The full IRB committee determines what disclosure language should be in the consent form.

5. Compensation
5.1 Will you give subjects gifts, payments, compensation, reimbursement, services without
charge or extra credit?
13 Yes.
• No.

If yes, please explain:

Subjects will be given a total of $50 in gift certificates from a local department store at the conclusion of
their participation in the study. |

6. Summary of Activities
Use lay language, do not refer to grant or abstract.

6.1 Describe the objective(s) of the proposed research including purpose, research question,
hypothesis and relevant background information etc.
Purpose and research question:
t h e purpose of this study is to gain understanding of how clients experience cultural competency in
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 181

studies reflect the voice of the patient. This study addresses the research question, what is the
experience of cultural connection and how do past-patients perceive the cultural competency of
occupational therapists?

Relevant Background Information:

All health disciplines have been directed by the Office of Minority Health to enhance cultural
competency in the practice of their disciplines (Office Minority Health, 2001). Health disparities found in
non-majority people strengthened this interest in cultural competency. Race or ethnicity based health
disparities conflict with the strong value of equity and social justice existing in America and resulted in
this call for improved healthcare service to all people. It is believed that health care resulting in improved
health practices amongst non-white, middle class Americans will reduce some of the health disparities
seen in America today (Institute of Medicine, 2002b). One strategy to reduce health disparities is to
enhance the cultural competency of healthcare practitioners. Several theoretical models designed to
develop cultural competency in health care disciplines have emerged, but all have emerged from the
: perspective of various health care disciplines (Betancourt, Green, & Camillo, 2002; Bonder, Martin, &
Miracle, 2002; Brach & Fraser, 2000; Campinha-Bacote, J. (1996); Leininger, 1997; Purnell, 2002; Stoy, !
2000; Wells & Black, 2000). These models describe strategies to increase the cultural sensitivity, cultural >
i communication, and cultural knowledge of health care practitioners from the perspective of the health
; care practitioner. Two of these models emerged from rehabilitation, a branch of health care that focuses j
I on the functional impact of chronic disease or disability. Occupational therapy is a healthcare discipline j
commonly associated with rehabilitation. Although theorized, there is little empirical evidence that !
i associates gains in practitioner cultural competence with reduced health disparities, increased efficiency
i of service, or increased quality of service. In addition, these models do not represent the voice of the
j patient or consumer.
!
i

Health Disparities. Americans receive unequal health care. People of racial and ethnic minority
| groups receive lower quality care even when insurance coverage and socioeconomic status are j
I controlled (Institute of Medicine, 2002b). They are more likely to be disabled (U.S. Census, 2001), and
!
they die younger (U.S. Census, 2001). These disparities are not genetic (Institute of Medicine, 2002).
j The Human Genome Project reported that all humans are 99.9% similar at the DNA level (Collins and j
!
Mansura, 2001), a finding which led the Institute of Medicine (2002b) to proclaim that "health disparities
are likely a result of social categorizing, not biology". !
These findings are especially significant in light of the changing population demographics of the United ;
• States. According to the 2000 U.S.. Census (2001), the 1990 to 2000 population growth was the largest |
; in history with the greatest proportion of growth in the non-white categories. By 2050 only 50% of the
i U.S. population will be non-Hispanic whites (U.S. Census, 2001). Additionally, more people self-identify
as having chronic health conditions or disabilities (U.S. Census, 2001). As the population ages, more
, chronic health conditions are expected to occur (Institute of Medicine, 2002b). Not only is the population
becoming more ethnically diverse, it is also requiring more health service. Clearly, all health workers will ;
more frequently interact with clients who are different than themselves.
Most health care workers are white and practice from a western worldview (Skelton, Kai & Loudon, |
;
2001). It is estimated that minority groups comprise less than 6% of doctors and only 9% of nurses i
i
(Cooper & Powe, 2004). Non-white groups approximate only 10% of the total health professions
1
workforce (Kamat, 1999). Clearly, all health care workers will increasingly interact with clients who are j
different from themselves.

I Culture. There are numerous definitions of culture in the literature. For the purpose of this research,
culture will be defined as "a learned set of shared interpretations about beliefs, values, norms, and social
| practices, which affect the behaviors of a relatively large group of people" (Lustig and Koester, 2006).
This research will focus on those beliefs, values, norms, and social practices associated with !
rehabilitative health practices. Although the term "culture" can refer to many large groups of people
including ethnicity, gender, profession, and any other symbol system that bounds people together (Collier ,
and Thomas, 1988) this research will address ethnic group or racial culture. Ethnicity or ethnic group
refers to groups who might share a "language, historical origins, religion, nation-state or cultural system"
(Lustig and Koester, 2006). This research will focus on ethnic groups who associate with a common
nation-state or geographic origin. The term, race, refers to physical characteristics shared by a group of
people and are used to separate one group from others (Lustig and Koester, 2006). For example, skin
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 182

frequently used interchangeably in the health disparities literature, both identifiers will be used in this
research.
Cultures have a time dimension although theorists vary in how this is described. Purnell (2002)
describes culture as changing slowly over time. Bonder, Martin and Miracle (2002) describe culture as
constantly emerging and dynamic. Leininger (1997) refers to dynamic, holistic, and interrelated patterns
of culture. Others do not discuss the temporality of culture leading the reader to assume that it is static i
and unchanging. For the purpose of this research, culture will be defined as dynamic and constantly '
changing in the manner described by Bonder et al (2002) and Leininger (1997).
Much is theorized about cultural patterns. Kluckhohn and Strodtbeck( 1960) suggest five major value i
orientations that describe how a culture responds to activities, social relations, the passage of time, the
self, and the world. Activity orientation is defined by a point on a being-becoming-doing continuum.
Social relations orientation ranges from hierarchical and formal to an absence of hierarchy and equality. •
' Time orientation describes how a group of people value the passage of time, often on a continuum of j
past, present or future time orientation. Self-orientation describes the self and its level of changeability in
I determining one's identity. World orientation describes one's orientation to the external spiritual and
j natural world. Hall (1977) also created a taxonomy of culture based the relationship between the j
i individual and their context. In Hall's taxonomy culture provides a filter used by the individual to interpret
interactions with their environment. High-context environments are those in which meaning is implicit in
the physical setting or is determined by the individual's values, beliefs and norms within their social role. !
Low-context environments are those in which meaning is primarily derived from explicit written or verbal \
! communication. Later Hofstede (2001) provided a taxonomy of societal value dimensions found in
j international business organizations. These dimensions are 1) power distance, 2) uncertainty avoidance, '
I 3) individualism versus collectivism, 4) masculinity vs. femininity, and 5) long-term versus short-term
| orientation. Hofstede (2001) suggested that these dimensions "reflect basic problems that any society
i has to cope with but which solutions differ" (p. xix). Although Hofsted's taxonomy originally emerged
; from cross-cultural research in industry, these same dimensions may be applied to health care.
i Descriptions of cultural patterns illustrate varied, but systematic differences in how groups of people j
; address societal problems. A common societal problem of interest in this research is that of how
' societies solve the problem of declining health. I

j Cultural Competency. Cultural competency in healthcare has been difficult to define. The first j
unifying attempt occurred in 2001 when national standards for culturally and linguistically appropriate >
services in health care were adopted by the U.S. Office of Minority Health. These standards identified
aspects of cultural competency that were required or suggested for institutions who receive federal funds.
These standards summarized many of the recommendations found in the literature to date. Common i
constructs included strategies directed to the client/practitioner level, the healthcare organization level,
; and the educational level of entering healthcare practitioners. It has been suggested that increased i
cultural competency at all levels will lead to improved patient care and reduced health disparities. This ;
research may support or disclaim these recommendations, particularly those directed to increase cultural '•
• competency at the client/practitioner level.
Three recommendations believed to impact cultural competency at the client/practitioner level appear i
repeatedly in the literature. First, it is believed that increasing the diversity of the health professions i
work force will lead to better healthcare of people in minority groups (Betancourt, Green & Camillo, 2002;
Brach & Fraser, 2000; Cooper & Powe, 2004; Institute of Medicine, 2002; Kamat, 1999; Office of Minority i
Health, 2001; Schurchman, 2004). Second, it is believed that increasing the common understanding
between clients and practitioners eill foster more culturally competent client/practitioner interactions
(Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000; Health Resources and Services j
Administration, 2001; Institute of Medicine, 2002; Office of Minority Health, 2001; Schurchman, 2004).
i Common understanding is described as the use of shared language systems and shared knowledge of
health-related content and beliefs. Strategies to facilitate common understanding include the use of '
interpreters, inclusion of family and community members in health visits and the use of community health
workers. Third, it is believed that increasing respect, appreciation and sensitivity for individuals
categorized as different from themselves will increase the provision of more culturally competent care
(Campinha- Bacote, 1998; Cross et al, 1989; Purnell, 2002; Health Resources and Services
Administration, 2001; Jibaja, Sebastian, Kingery & Holcomb, 2000; Office of Minority Health, 2001;
Schuchman, 2004; Wells, 1993; W4ells & Black, 2000; Wittmann & Velde, 2002). Enhancing patient- ,
provider communication and trust, increasing provider respect and appreciation to culture's different than '
their owa and increasing proyjder^ejf-awareness of their own culturaMensjre some of the suggestions ,
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD

derived from trie literature to increase provider sensitivity, this research examines the second and third
recommendations , the need to increase common understandings between clients and practitioners and
| the need for more culturally sensitive care. For the purpose of this research, cultural competent care will
! be defined as a dynamic and contextual process between the healthcare practitioner and the client
resulting in a co-construction of the need for healthcare, the expected health outcomes, and the plans to
[ achieve these outcomes.

Occupational Therapy. Occupational therapy is a rehabilitative health care discipline whose purpose ;
is to enhance the well-being of people despite impairments caused by injury, disease or disability
(American Occupational Therapy Association, 2005). Often the well-being of individuals is measured in
improved function through increased independence, increased mastery over the environment, improved I
\ mobility, and increased productivity (American Occupational Therapy Association, 2004). Common
treatment outcomes include improved client performance in daily tasks such as self-care, driving, or
community mobility (American Occupational Therapy Association, 2005). Occupations, or those units of !
meaningful every day activity are believed to be both named and shaped by the culture of the individual \
. (Larson, Wood, & Clark, 2003). By performing culturally competent care, occupational therapists strive to i
; improve individual health and well-being through maximal engagement in life.
Occupational therapy treatment goals commonly reflect western cultural values of "individualism, j
! independence, materialism, mobility, and productivity (Bellah, Madsen, Sullivan, Swidler, & Tipton, 1985;
Cross, 1990; Kondo, 2004; Pierce, 2003; Skawski, 1987). Tension may exist when these discipline I
j values are not congruent with those of the client receiving services. Kondo (2004) illustrates this tension '
! in a case study describing a Japanese man receiving western-based occupational therapy intervention, j
j The therapist anticipated and imagined an outcome of the client at home, when in actuality, cultural
complexities resulted in discharge to an institution. Cena, McGruder, and Tomlin (2002) examined the j
professional literature of occupational therapy by examining twenty four years of published literature for
indicators of ethnicity or social class labels and found that indicators were largely absent. This finding
suggests that those exemplar clients may be idealized as raceless or White and of middle class. The
i authors state, "In the case of hypothetical clients constructed as teaching examples or real client cases I
\ chosen to illustrate therapy processes, the relative absence of persons identified as minorities or of lower i
| SES may be taken to indicate that such persons are not valued as therapy recipients or that their life !
:
situations are seen as too challenging for intervention" (p. 136). j
Two models of cultural competency exist in occupational therapy literature. Bonder, Martin, and !
Miracle (2004) offer a definition of culture as "emergent in everyday interactions of individuals" and j
suggest that enhanced therapy encounters occur when therapists use careful attention, active curiosity, :
and self-reflection/ self-evaluation (pg. 159). Wells and Black (2000) offer a model in which self- !
exploration and awareness, knowledge, and skills of the therapist intersect to develop cultural j
'. competence. Neither model has been empirically tested in practice. Although both models draw |
principles from the literature, the body of literature is limited in rigor. Case studies account for some of
the principles on which these models are based, but no quantitative and few qualitative studies exist to j
support even the basic premises of these models. !
One phenomenological study interviewed nine practicing occupational therapists asking the question,
"Can you tell me about your experiences in working with clients who are from a cultural background that
I is different from your own?" (Scott, 1997). Two common themes emerged. The first theme described j
difficulty by the therapist in interpreting behaviors of their clients, including language barriers and a belief .
; that the clients were reluctant to communicate with the therapists. Therapists described frustration with
their relationship with the clients. A second theme described the belief that culturally sensitive practice
\ required a focus on family and home environments, an analysis of the client's socio-economic system, \
the ability to learn from each other and a self-awareness of personal attitudes.
1
One ethnographic study explored the lived experience of fourteen occupational therapists in the
course of their day-to-day practice and found an apparent temporal rhythm in the therapy/ client i
j relationship. This study did not specifically study cultural differences, but findings can be applied to the '
cultural competency literature. If findings offer deeper meaning about patient/client relationships when
the ethnic and racial backgrounds are likely similar, findings may be exaggerated when the cultural
backgrounds are dissimilar. The initial stage required negotiating over therapy goal setting. Therapists j
felt increased "connecting" to clients when the goals "just clicked", "not having to sell OT" (pg. 202). This
occurred most readily when the value of independence was shared by the therapist and the client. The
middle phase of "doing the work of therapy" felt most "connected" when the client and therapist shared
the value of working hard. The final phase, or "seeing how thingsjurned out" was celebratory^ when there
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD

was common ground between therapist and client over achievement of therapy goals. Rosa and
i Hasselkus (2005) state "The phenomenological data in this study suggest that the ideal of collaborative,
patient-centered practice with patients may not always be evident or prominent in actual practice, that !
therapists may lack an openness to exploring differences with patients over therapy goals and
! expectations, and that therapists may often not even seek out collaborative relationships with patients"
(pg. 204). This qualitative study suggests that therapists have difficulty finding common ground with j
i patients.
Only one study was found to examine the therapist/client relationship from the perspective of the
client. In this ethnographic case study, the participants and the researcher shared a Japanese ethnic |
background and both spoke Japanese. Despite these areas of cultural congruence, a greater need for '
I cultural competency still existed. The researcher found that speaking the same language and sharing
i the same ethnic background did not allow a change in the unequal power distribution between health
I care worker and client (Blanche, 1995). The researcher concluded that at least four coping mechanisms |
:
were used by this client as the client interacted with the health care system; 1) denial of cultural
; differences or the avoidance of cultural conflict; 2) not questioning during interactions with health care i
j workers; 3) subtle questioning to trusted people; and 4) passive resistance or "noncompliance" as labeled j
! by the medical system (Blanche, 1995). While this study examined the day-to-day experience of a j
j Japanese client receiving occupational therapy services from a Japanese-American therapist, the study '
\ did not address the more common situation that occurs when the therapist and client do not speak the j
same primary language and do not share sociocultural similarities.

The purpose of this research is to better understand the phenomenon of cultural competency in
I occupational therapy practice. This research seeks greater depth of understanding from the client's
I worldview to better interpret the experience of culturally competent care. The lack of the
| patient/client/consumer voice is notable in all the models of cultural competency proposed in healthcare.
j This lack of client voice may lead to false assumptions and false models for cultural competency. This
1
research seeks the client voice within a rehabilitative framework where health is defined as enhancing j
j participation in society rather than minimizing the effects of disease. This research will deepen the I
knowledge in the discipline of occupational therapy. This research seeks to answer the question, what is j
I the meaning of cultural competency for past clients of occupational therapy services? j

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I • I
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Jibaja. M L , Sebastian, R., Kingery, P., & Holcomb, J.D. (2000). The multicultural sensitivity of physician
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• !

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| Lustig, M. and Koester, J. (2006). Intercultural Competence: Interpersonal Communication across j
| Cultures. Boston: Pearson Education.
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McCormack, G. (1987). Culture and communication in the treatment planning for occupational therapy !
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|
i McGruder, J. (1998). Culture and other forms of human diversity in occupational therapy. In M.E.
' Neistadt & E.B. Crepeau (Eds)., Willard and Spackman's occupational therapy (9th ed., pp. 54-66). I
! Philadelphia: Lippincott. !

[ O'Connor, S. (1993). Disability and the multicultural dialogue. Center on Human Policy, Syracuse j
j University. Retrieved on 12/10/2003 from http://soeweb.syr.edu/thechp/multovw1.htm

Office of Educational Research and Improvement. (1992). Cultural diversity in rehabilitation: Report
i from the study group institute on rehabilitation issues. Washington D.C.: Arkansas Research and j
t Training Center in Vocational Rehabilitation. j

Office of Minority Health (2005). Retrieved on 05/01/2005 from I

http://www.omhrc.gov.cultural/whatsnewboxl.htm.

I Office of Minority Health. (2001). National standards for culturally and linguistically appropriate services |
i in health care. Washington D.C.: U.S. Department of Health and Human Sen/ices.

i Oxford Dictionary and Thesauras American Edition. (1996). New York: Oxford University Press.

Patton, M. (1990/1980). Qualitative evaluation and research methods 2nd ed. Newbury Park, CA: '
! Sage.

; Patton, M. (2002). Qualitative evaluation and research methods 3rd ed. Thousand Oaks.CA: Sage.

i Purnell, L. (2002). The Purnell model for cultural competence. Journal of Transcultural Nursing, 13(3),
193-196.
i

• Rosa, S.A. and Hasselkus, B.R. (2005). Finding common ground with patients: The centrality of
compatability. American Journal of Occupational Therapy, 59, 198-208.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 187

_
of Medicine,"351,1049-1051. '"" " " """""""" " •-—

Sanchez, V. (1964). Relevance of cultural values: For occupational therapy programs. American
Journal of Occupational Therapy, 18,1-5.

Schuchman, KM. (2004). Hmong mental health in Ramsey County: Recommendations to the
legislature: Toward better mental health: A community approach. Hmong Mental Health Providers
! Network and the Council on Asian Pacific Minnesotans.

! Scott, R. (1997). Investigation of cross-cultural practice: Implications for curriculum development.

• Canadian Journal of Occupational Therapy 64, 89-96.

Skawski, K.A (1987). Ethnic/racial considerations in occupational therapy: A survey of attitudes.

! Occupational Therapy in Health Care 4(1), 37-48.

Skelton, JR, Kai, J, & Loudon, R F. (2001). Cross-cultural communication in medicine: questions for
' educators. Medical Education, 35, 257-261.

| Spector, R.E. (2000). Cultural Diversity in Health and Illness (5th ed). Upper Saddle River, NJ: Prentice
j Hall Health.

' U.S. Census. (2001). Population change and distribution, 1990-2000. Retrieved August 5, 2004 from
i http://www.census.gov/prod/2001pubs/c2kr01-2.pdf.
i ' .
\ U.S. Department of Health and Human Services, 2002.

' Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy.
j Ontario: University of Western Ontario.
!
Weber, S. (1986). The nature of interviewing. Phenomenology and pedagogy. 4(2), 65-72.

I Wells, S. A. (1993). Developing multicultural competency: An education and resource manual for
educators and practitioners. Baltimore, MD: American Occupational Therapy Association.
|
'< Wells, S. & Black, R. (2000). Cultural competency for health professionals. Bethesda, MD: American
Occupational Therapy Association.

I Wittman, P. & Velde, B.P. (2002). The issue is: Attaining cultural competence, critical thinking, and
intellectual development: A challenge for occupational therapists. American Journal of Occupational
Therapy, 56, 454-456.

i Xuequin, G. (2000). Barriers to the use of health services by Chinese Americans. Journal of Allied
Health, 29, 64-70.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 188

6.2 Which methods will this study include? (check all that apply)
l~1 Descriptive
I I Ethnographic
0 Experimental/Control Design
1 I Field work (If checked, please include Appendix L)
\Z\ Formative
I I Longitudinal
Q Oral history
£<] Phenomenological
f~l Qualitative
I I Quantitative
l~l Other, specify :

6.3 Describe the research study design.

j Phenomenoloogy aims to transform a lived experience into a textual expression as it systematically
I uncovers and describes the internal structures of lived experience (Van Manen, 1990). Hermeneutics is
i the "bringing to understanding" of this text (Van Manen, 1990). Understanding the patient's experience
I will help theorists fully understand the phenomenon of cultural competency. Deeper understanding will
| lead to therapy that is more meaningful to the client and enhances the quality of living after impairment by
| injury, illness or disease. Participants will be asked to describe the experience of therapy when the
I therapist represents a different sociocultural background than their own. Because the researcher is also
an occupational therapist, the context and nuances of the therapy context should be easily understood.
The researcher will enter an experiential situation that is historical in nature. Therapy will have ended,
and the client will be asked about past therapy times, when they felt a shared understanding and times
j when they did not. The purpose of the study is to gain understanding about the phenomenon of culturally
| competent occupational therapy practice, not to evaluate effectiveness of individual therapists in
I providing best-practice care.
| Phenomenology, as opposed to grounded theory framework was selected as a desired research
!
design because of its focus on the lived experience. Grounded theory focuses on the process of
t generating theory with identified procedures to inductively analyze and verify an emerging theory (Patton,
i 2002). In this case several theories exist, but all have poor empirical evidence and an absence of voice
j from those who the theories intend to benefit. An expression of the lived experience of those who have
:
experienced occupational therapy in a cross-cultural situation will add a dimension not yet heard by
theoreticians and researchers alike.
Text will be solicited from approximately ten past clients of occupational therapy who differ from their
i therapist by race or ethnicity. The sample may also include caregivers of past clients who were
maximally involved in the therapy and who are currently responsible to provide care. Potential j
participants will be solicited using intensity sampling, a form of purposeful sampling (Patton, 2002).
:
Participants will be selected for their ability to provide information-rich text that manifests the j
phenomenon of cultural competency. The director of occupational therapy at Fairview University Medical I
Center will contact past recipients of occupational therapy who meet the inclusion and exclusion criteria !
I for the study. This department is known to serve a culturally diverse population thereby able to provide a
: sample of information-rich cases. Sampling will stop when text demonstrates a redundancy in constructs
at a minimum of five participants.
| The purpose of interviewing past and culturally diverse clients of occupational therapy is to provide
text regarding participants' past experiences when receiving occupational therapy services. All j
interviews will occur at the participant's convenience for time and location in an environment suitable for j
an uninterrupted conversation of approximately one hour in length. All interviews will be audio recorded !
; and then transcribed by the researcher. The approach to analysis recommended by Giorgi (1997) will
I be used to analyze the text. First, phenomenological reduction will be used to break from the natural i
' attitude of the researcher. As the researcher, I will bracket past knowledge about cultural competency
and my past experiences as an occupational therapist engaged in practice with people different from
myself. By setting aside my assumptions and biases, I will be more open to events as presented to me.
Second, I will obtain descriptions of the experience of culturally competent practice from the natural I
;_ att|tude_of past participants of occupational therapy. This will occur in the form of transcribed interviews. \
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD

third, I wiil search for the essence of each text using "free imaginative variation" (Giorgi, 1997). Free
imaginative variation is the act of freely changing parts of the phenomenon to see if the phenomenon
remains identifiable. I will identify the essence of each text as the most invariant meaning for that text.
This will require a first reading of the text in its entirety and using free imaginative variation to identify the
overall essence of the text. Third, I will divide the data into parts knowing that my prior assumptions as
the researcher, and educator, and an occupational therapist will give perspective as I divide the text. To
maximize a stance of discovery and openness, I will consciously bracket past experiences regarding the
phenomenon. Meaning units will be identified at each transition in the text using a slower and more
systematic reading. Meaning units will not be predetermined, but instead will emerge from the text. I will
I next use free imaginative variation to organize and express the essence of each meaning unit. Each
1
segment of text will be reduced to a phrase or short group of sentences that describe the central theme
' of that text. Key themes exposed in this manner will then be transposed into the disciplinary language of ;
1
education and occupational therapy practice. I will next express the structure of the phenomenon using J
imaginative variation amongst the transformed meaning units to determine what is essential to the j
phenomenon of culturally competent occupational therapy practice. According to Giorgi (1997), it is j
; likely that a study with many subjects will produce several structures. Because my study attempts to add
I greater depth to the understanding of cultural competency in practice, I hope to better elucidate those j
structures seen in all interviews.
Interpretation of the text will next be structured as described by Van Manen (1990). Van Manen (1990) j
suggests five possible ways of structuring the phenomenon; thematically, analytically, exemplificatively, i
! exegetically, or existentially. Thematic working of the text uses emerging themes to guide interpretation. I
| Analytic structuring may include the reworking of reconstructed life stories, anecdotes, or antinomous '
i accounts to bring out different ways of seeing the phenomenon. Exemplificative structuring involves first j
: identifying the essential nature of the phenomenon followed by systematic variation of examples that \
' enlighten essential aspects of the phenomenon. Exegetical working of the text occurs when the j
researcher writes in a dialogical manner with another phenomenological writer regarding the \
! phenomenon. Lastly, existential organizing of the text "weave(s) one's phenomenological description
• against the existentials of temporality (lived time), spatiality (lived space), corporeality (lived body), |
! sociality (lived relationship to others)" (Van Manen, 1990, p. 172). The exact method used to interpret
the text will emerge in the process of writing and reworking the interpretation. It is anticipated that
' structuring the writing thematically will be optimal to organize interpretation of the data obtained in this '
proposed study.
In the hermeneutic manner, these analyses will continuously be interpreted using existing literature of ,
j theories of cultural competency and therapeutic relationships. Expected sources include, but are not ,
: limited to writings about culture, models of cultural competency, and cultural communication and I
| linguistics.
| Using a process that Van Manen (1990) calls, "interpretation through conversation" the researcher will i
again meet with participants to share transcript themes and emerging interpretation about the i
phenomenon of culturally competent occupational therapy. These interviews will occur following analysis ;
of each individual text and initial structuring of the phenomenon. The researcher will share initial
interpretation of the combined texts both verbally and in writing. Participants will then be asked to
comment on the interpretation. These interviews will also be audiotaped, transcribed into text and
incorporated into the hermeneutic analysis. In this way, each participant will be interviewed a total of two
; times for a total of approaching twenty interviews.

6.4 Describe the tasks subjects will be asked to perform. Attach surveys, instruments, interview questions,
focus group questions etc. Describe the frequency and duration of procedures, psychological tests, educational tests,
and experiments; including screening, intervention, follow-up etc. (If you intend to pilot a process before recruiting for
the main study please explain.)
Subjects will be asked to respond to the open-ended question, "What was your experience of receiving
therapy from a therapist who was culturally different from yourself? Probing questions designed to elicit
greater depth of response to the primary question will follow as needed. Follow- up questions may
include, "Tell me something positive/negative about working with a therapist so different from yourself?"
or Tell me about a time when you would describe your therapy as culturally competent?" Each interview
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 1%

investigator has transcribed the text and completed a preliminary analysis, each subject will again be
interviewed to ensure maximum accuracy of the interpretation.

6.5 How many months do you anticipate this research study will last from the time final approval
is granted?
24 months

7. Participant Population
7.1 Expected number of participants: 10 (5 male and 5 female)
# of Male # of Female
7.2 Expected Age Range
Check all that apply:
I I 0-7 (Include parental consent form)
O 8-17 (Include child's assent form and parental consent form)
E3 18-65
13 65 and older

Exact ages to be includedrall adults

 UNIVERSITY OF MINNESOTA INSTITI :TION u REVIEW BOARD 191

7.3 Inclusion/Exclusion of Children in this Research

If this study proposes to include children, this inclusion must meet one of the following criterion for risk benefit assessment
according to the federal regulations (45_(TR5i>...su.b£aii JJ).
Check the one appropriate box:
• (404) Minimal Risk
I I (405) Greater than minimal risk, but holds prospect of direct benefit to subjects
l~1 (40ft) Greater than minimal risk, no prospect of direct benefit to subjects, but likely to yield generalizable
knowledge about the subject's disorder or condition.

Explain how this criterion is met for this study:

If this study would exclude children. Nil! guidelines advise that the exclusion be justified, so that potential for benefit is
not unduly denied. Indicate whether there is potential for direct benefit to subjects in this study and if so, provide
justification for excluding children. Note that if inclusion of children is justified, but children are not seen in the Pi's
practice, the sponsor must address plans to include children in the future or at other institutions.
[ 3 No direct benefit established (exclusion of children permissible)
Q Potential for direct benefit exists.

Provide justification for exclusion of children:

1. Differing service delivery models are commonly used with children. Most children receive occupational
therapy services in a school setting where discharge and service criteria differ.
2. Due to differing levels of social and language maturity, children may not be able to answer with the depth of
analysis desired in this study.
3. Caregivers of children who meet study inclusion requirements of having received a minimum of 10
occupational therapy sessions prior to discharge from therapy and who have received no additional occupational
therapy services since discharge and who speak sufficient English to be interviewed will be included as participants
in the study. In this way children potentially benefit from this study.

7.4 Other Protected Populations to be Targeted or Included in this Research. Check all that
apply:
Protected by Federal Regulations
I I Pregnant Woman/Fetuses/IVF (Include Appendix B)
I I Prisoners (Include Appendix O
(Refer to 45CTR4ft subpart B and 45 CFR 4ft subpart C on the populations protected by Federal Regulations)

Protected by Federal Guidelines

O Mentally'Emotionally, Developmentally Disabled Persons (Include Appendix I)
0 Minority Group(s) and Non-English Speakers (Include Appendix I)
0 Elderly Subjects - 65+ (Include Appendix I)
1 I Gender Imbalance—all or more of one gender fInclude Appendix I)

7.5 Inclusion and Exclusion of Subjects in this Research S t u d y

Describe criteria for inclusion and exclusion of subjects in this study
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 192

Inclusion Criteria:
Discharged adult clients or caregivers of children who received at least ten therapy sessions prior to
discharge, who have received no additional occupational therapy services since discharge, who have
been discharged within the past year oj Initial cojitartand_s|)e^k^u_fficjent Englishjo be interviewed

Exclusion Criteria: L
! Children, individuals whom the participant recruiter or investigator believes to lack sufficient ability or i
English speaking skills to permit direct interview, ;

7.6 Location of subjects during research activity or location of records to be accessed for
research:
Check all that apply:
E*3 Fairview University Medical Center
l~| Fairview Southdale Hospital
Q Fairview Ridges Hospital
O Other Fairview Facility, specify:
r j Gillette Children's Hospital
• Other Hospitals, specify:
C] Community Clinic, specify:

• Elementary/Secondary Schools (Include Appendix M), specify:

l~l Community Center, specify:
l~l University Campus (non-clinical), specify:

l~l Prisons/Halfway houses (Include Appendix C), specify:

[~l Nursing Home(s), specify:
• Subject's Home, specify:
l~| International Location: (Include Appendix K)
r~l Other special institutions, specify:

7.7 Describe the rationale for using each location checked above. Attach copies of IRB approvals or letters
of cooperation from other agencies or sites, if applicable.
Occupational Therapy at Fairview University Medical Center is known to serve a diverse client group. j
1
The Occupational Therapy Department has the opportunity to and the capacity to identify and initially •
; contact a potential sample for this study. A letter indicating the support of Occupational Therapy at
Fairview University Medical Center has been solicited for inclusion in this application. \

8. R e c r u i t m e n t

8.1 Describe the recruitment process to be used for each group of subjects:
Attach a copy of any and all recruitment materials to be used e.g. advertisements, bulletin board notices, e-mails,
letters, phone scripts, or URLs.
:
Potential
participants will be solicited using intensity sampling, a form of purposeful sampling (Patton, 2002). The
director of occupational therapy at Fairview University Medical Center will contact past recipients of
! occupational therapy who meet study inclusion and exclusion requirements. Copies of an initial
telephone script and an initial letter to be used by the Fairview University Medical Center occupational
therapy representative are included in this proposal. Potential participants will then contact the
researcher directly should they be interested in participating in the study.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 193

8.2 Explain who will approach potential subjects to take part in the research study and what will
be done to protect individuals' privacy in this process:
Initial contact of subjects identified through records search must be made by the official holder of the record, i.e.
primary physician, therapist, public school official.
1
The pool of possible participants will first be identified by the director of occupational therapy at Fariview
1 University Medical Center by asking therapists to identify past patients who meet the inclusion/exclusion
requirements for the study. The director of occupational therapy will then contact these past clients by
telephone or mail requesting that the researcher be contacted should they want to participate in the
i study. Contact information for the potential participant will be obtained from the medical record. Privacy
l will be protected in this process because the director of occupational therapy is an official holder of this
• information. In this way, the privacy of those possible participants not meeting inclusion/exclusion criteria
I and those not interested in participating will be protected.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 194

8.3 Are subjects chosen from records?

• Yes. Who gave approval for use of the records;
13 No.
If yes, are records "private" medical or student records?
• Yes. Provide the protocol, consent forms, tetters, etc, for securing consent of the subjects of the
records. Written documentation for the cooperation<permission from the holder or custodian of the
records should be attached.
• No.

8.4 University of Minnesota policy prohibits researchers from accepting gifts for research
activities. Is the study sponsor offering any incentive connected with subject enrollment or
completion of the research study (i.e. finders fees, recruitment bonus, etc.) that will be paid
directly to the research staff?
• Yes.
0No.
If yes above, please affirm that you have declined acceptance of gifts in the box below.
Code of Conduct - http://wwwl .umn.edu/regents/policies/academic/Conduct.html

9. Risks and Benefits

9.1 Does the research involve any of these possible risks or harms to subjects?
Check all that apply:
I I Use of a deceptive technique. (Include Appendix N)
• Use of private records (educational or medical records)
• Manipulation of psychological or social variables such as sensory deprivation, social isolation, psychological
stresses
E3 Any probing for personal or sensitive information in surveys or interviews
• Presentation of materials which subjects might consider sensitive, offensive, threatening or degrading
I I Possible invasion of privacy of subject or family
• Social or economic risk
l~1 Other risks, specify:

9.2 Describe the nature and degree of the risk or harm checked above. The described risks/harms
must be disclosed in the consent form.
I It is possible that questions may lead to self- disclosure of some incident related to culture and health that
the participant remembers with distress. !

9.3 Explain what steps will be taken to minimize risks or harms and to protect subjects' welfare.
If the research will include protected populations (see question 7.4) please identify each group
and answer this question for each group.
All participants will be members of the minority group protected population. During each interview,
•• subjects will be reminded that they may stop the interview at any time. Participants can stop the
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 195

J interview by verbally directing the interview to stop or by turning off the tape recorder. Because of the
open-ended nature of phenomenological interviewing, subjects will be permitted to guide the interview
and thereby minimize the risks associated with the interview. Participants aged 65+ will also be
i permitted to stop the interview at any time by verbally directing the interview to end or by turning off the
1 tape recorder.

9.4 Describe the anticipated benefits of this research for individual subjects in each subject
group. If none, state "None."
(Hint: For instance, if the intervention proves effective, subjects in active arms will benefit but controls will not.)
j" All participants will benefit from the opportunity to impact the future provision of occupational therapy
services. All participants will also benefit from the receipt of up to two $25 Target gift certificates.

9.5 Describe the anticipated benefits of this research for society, and explain how the benefits
outweigh the risks.
j The discipline of occupational therapy will benefit by service provision that better meet the needs of one
j culturally diverse client group. Society will benefit from reflection of the assumptions used to base
1
current models of cultural competency in health care. Risks are minimal. Bias in the study design is
towards successfully culturally competent therapy encounters.

10. Confidentiality of Data

See Protecting Private Data Guideline from the Office of Information Technology (OIT)for
information about protecting the privacy of research data.
10.1 Will you record any direct identifiers, names, social security numbers, addresses, telephone
numbers, etc?
Kl Yes.
• No.
If yes, explain why it is necessary to record findings using these identifiers. Describe the coding system you
will use to protect against disclosure of these identifiers.
! Name, address and telephone number will be recorded on a list and kept in a locked file cabinet in a j
i locked file room. An identifier of the participant's choosing will be assigned to each case. All '
; transcripts and notes will be coded using the assigned identifier. Interview transcripts and researcher
I notes will be maintained on the researcher's computer. Physical access to this computer will be !
restricted as much as possible. The computer will be turned off when not in use for extended periods j
j of time. Anti-virus software is installed and will be kept up-to-date. A strong password is maintained
on the computer at all times. Copies of text will be maintained on the University network server \
i behind appropriate software firewalls. Technical support is and will be continuously reviewed through \
; the Academic Health Center Administration Information Systems. j

10.2 Will you retain a link between study code numbers and direct identifiers after the data
collection is complete?
KlYes.
• No.
If yes, explain why this is necessary and state how long you will keep this link.
I The link between study code numbers and direct identifiers will be maintained until analysis ancf
' interpretation of the text is complete. This will permit the researcher to contact the participant should
further clarification of meaning be necessary. •
UNIVERSITY OF MINNESOTA INSTITI TIONAL REVIEW BOARD 196

10.3 Will you provide the link or identifier to anyone outside the research team?
• Yes.
EI No.
If yes, explain why and to whom:

10.4 Where, how long, and in what format (such as paper, digital or electronic media, video,
audio, or photographic) will data be kept? In addition, describe what security provisions
will be taken to protect this data (password protection, encryption, etc.).
| The text will be kept in audio, electronic, and paper forms throughout the duration of the research. Audio
j tapes, hard copies of text, and signed informed consent forms will be kept in a locked file cabinet in the
researcher's office. Electronic copies of transcriptions, researcher notes, and text analysis will be
maintained on the researcher's computer and a copy saved onto the Academic Health Center network.
This information will be protected via strong password, up-to-date anti-virus software and ongoing
i computer technical support.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 197

10.5 Will you place a copy of the consent form or other research study information in the
subjects' record such as medical, personal or educational record? (This information should
be explained on the consent form.)
• Yes.
Kl No.
If yes, explain why this is necessary:

10.6 Federal Certificates of Confidentiality

If the data collected contains information about illegal behavior, visit the NIH Certificates of Confidentiality Kiosk
(http://grantsl.nih.g0v/grants/policy/coc//for information about obtaining a Federal Certificate of Confidentiality.

Will you obtain a Federal Certificate of Confidentiality for this research?

I~l Yes. Submit documentation of application (and a copy of the Certificate of Confidentiality award if granted) with
this application form.
EJ No.

11. Use of P r o t e c t e d H e a l t h I n f o r m a t i o n ( P H I ) : H I P A A R e q u i r e m e n t s

11.1 As part of this study, do you:

a. Collect protected health information (PHI)* from subjects in the course of providing
treatment/experimental care; or
b. Have access to PHI* in the subjects' records?

Please read the definition of PHI below before answering.

*PHI is defined under HIPAA as health information transmitted or maintained in any form or medium
that:
1. identifies or could be used to identify an individual;
2. is created or received by a healthcare provider, health plan, employer or healthcare clearinghouse; and
3. relates to the past, present or future physical or mental health or condition of an individual; the provision of
health care to an individual; or the past, present or future payment for the provision of healthcare to an
individual.
The following records ARE EXEMPTED from the definition of PHI even though they may contain health-
related information: student records maintained by an educational institution and employment records
maintained by an employer related to employment status. If your study uses these kinds of records, it is not
subject to HIPAA. However, existing IRB rules on informed consent and confidentiality still apply.
Health-related information is considered PHI if (any of the following are true):
1. the researcher obtains it directly from a provider, health plan, health clearinghouse or employer(other
than records relating solely to employment status);
2. the records were created by any of the entities in" 1" and the researcher obtains the records from an
intermediate source which is NOT a school record or an employer record related solely to
employment status; OR
3. the researcher obtains it directly from the study subject in the course of providing treatment to the
subject.
Health-related information is not considered PHI if the researcher obtains it from:

1. student records maintained by a school;

UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 198

2. employee records maintained by an employer related to employment status: OR

3. the research subject directly, if the research does NOT involve treatment.

D Yes. If yes to a or b above, complete Appendix H to show how you will satisfy HIPAA requirements for
authorization to use PHI in research.

0 No. If no, continue to section 12.

12. Expedited Review

If you would like this application to be considered by the IRB for expedited review, fill out this
section. If not, continue to section 13.

Federal criteria for risk assessment make some studies eligible for Expedited Review (see 45 CFR
46.110 and 21 CFR 56.110).

Expedited review categories can be found at http:/:\v\vw.irb.umn.fdw'appl\ins;xrevcatceories.ctin.

12.1 What is the level of risk to subjects in this research study?

L3 Not greater than minimal risk. Indicate which expedited review category 1-9 for this research.
Category #: 7

• Greater than minimal risk.

13. Informed Consent Process

13.1 Recognizing that consent itself is a process of communication, build on your responses to
questions 8.1 and 8.2 and describe what will be said to the subjects to introduce the
research. Do not say "see consent form". Write the explanation in lay language. If you are using telephone
surveys, telephone scripts are required.
T The initial telephone script is:
j Hello, my name is and I work for Fairview University Medical Center. I understand j
! that you or someone in this household received occupational therapy services within the past year. I
want to offer you, or the past patient, the opportunity to participate in a research study that will help j
occupational therapists provide more culturally competent care. This research is sponsored by the \
1
University of Minnesota and will help us find more about the experience of receiving occupational
1 therapy when your therapist is culturally different from yourself. You would be interviewed by a j
researcher at your choice of location followed by a second interview at some later time- probably
[
; several months from now. Both interviews will be audiorecorded. Any information that you provide will
i be kept private so others willnot know what you say. The researcher values your time. To \
compensate, you will receive up to two $25 Target gift certificates. If you are interested in participating,
or want more information, please contact Peggy Martin at 612-626-4358 and leave your name and i
phone number or whatever is the best way to contact you to further discuss your participation in the
study. |
l
Initial contact between researcher and participant script:
Hello, my name is Peggy Martin, an occupational therapist and a doctoral student at the University !
of Minnesota. I am studying cultural competency in occupational therapy and thank you for your
willingness to participate in this interview. I am the researcher listed here on this paper. My advisor is
alsojisted on this consent form and can also be contacted if you have any questions. I wanUqJeam _ !
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD

more about what happens when the patient is culturally different from the therapist giving the therapy. I
want to learn about your experience as the patient. Knowing this will help occupational therapist
I provide more culturally sensitive treatment. It will also help us to develop models of how to provide
j culturally competent care. Participation in this research means that I will interview you on two different
days, each interview lasting approximately one hour. I will ask you to talk into a tape recorder during
the first interview. This is when I will ask you to tell me about your experience being a patient when
your therapist differs culturally from you. I use a tape recorder so I can later type exactly what you say ;
and then analyze it with what I know. Several months later, I will again contact you to look over what I j
have written and to be sure that it is what you meant to say. I will not use your name. Others will not ,
; know that these words are yours. I will keep track of what you say through a code name that you can
select. After I have finished analyzing all that people tell me, I will write the main themes of what I find
j into a paper, hopefully to be published. I will give you a copy of any article that may result.
I You can stop being in the research study at any time. You can also stop the interviews at any time. If
the interview causes you to remember difficult times in therapy or bad memories associated with health j
; care visits, you can always stop the interview by asking me to stop or by turning off the tape recorder, j
You can even ask that I not use anything that you have said even after you have said it. >
You will be given a $25 Target gift certificate after completion of the first interview and another $25 gift
certificate at the end of the study. '
Now, I've talked a lot. I want to be sure you understand your rights. Can you tell me what your
responsibilities will be in this study? Can you also tell me what happens if you no longer want to
continue being in the study? How might your involvement in this research be good or bad for you?
How will I know when or if you'want to stop the interview?
Here is a consent form that describes all that I have said. Please read over it. Please ask me any
• questions that you might have. When you are finished reading the form, I can answer any questions \
i that you might have. When you are ready please sign both copies. One copy is for each of us. J

13.2 In relation to the actual data gathering, when will consent be discussed and documentation
obtained? (e.g., mailing out materials, delivery of consent form, meetings) Be specific.
'• Consent will first be discussed upon initial contact by the official holder of the patient records. Potential
j participants will be informed of the voluntary nature of this research at that time. Informed consent will
:
again be discussed when the potential participant contacts the researcher. At this time the researcher
; will discuss the purpose, participant responsibilities, potential risk and potential benefit in addition to the
j inclusion and exclusion criteria for participation in the study. At this time an initial time for interview will
be scheduled. The Participant will be asked at this time if they would like the consent form to be mailed
j to them to provide time to read the document prior to the scheduled interview time. At the time of
! interview the researcher will verbally speak the text written above and seek signatures on a written
informed consent form. The same verbal script will also be spoken at the time of the second interview.

13.3 Will the investigator(s) be securing all of the informed consent?

13 Yes.
QNo.

If no, please name the specific individuals who will obtain informed consent and include their job
title/credentials and a brief description of your plans to train these individuals to obtain informed consent
and answer subjects' questions.

Subject Comprehension
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 200

It is the responsibility of the investigator to assess comprehension of the consent process and only enroll
subjects who can demonstrate informed understanding of the research study (45 CFR 46.116)

The federal regulations require that consent be in language understandable to the subject. If subjects do not
comprehend English, translated consent forms are required or the use of short farms with an oral explanation
can be accepted, (see the Cons^if^ijcevx&tllLBll section of our Web site)

13.4 What questions will you ask to assess the subjects' understanding of the risks and benefits of
participation? (Questions should be open-ended and go beyond requiring only a yes/no
response.)
1. What are your responsibilities in this study? 1
2. How might your involvement in the study be good or bad for you?
i 3. How will I know when or if you want to stop the interview?

Documentation of Consent

13.5 Prepare and attach a consent form for IRB review.

Please see the sample consent form andfollow it carefully. Do not submit sponsor preparedforms without
editing the form to include University of Minnesota IRB standard language and all essential elements of
informed consent.

Under specific conditions, when justifiable, documentation of informed consent can be waived or altered. These
limited conditions are described in 45 CFR 46.116 and 45 CFR 46.117. Ifyou believe that this research
qualifies according to the regulations, include Appendix W.

Resources for preparing informed consent forms:

• Informed Consent Online Tutorial - http://www.research.umn.edu/consent/

• Informed Consent section of the Human Subjects Guide - http://www.irb.umn.edu/guide/humanGuide4.cfm

You have reached the end of this form. Please make sure that you have responded to every question on this application
(even ifyour response is "not applicable ").
 CONSENT FORM
CULTURAL COMPETENCY IN OCCUPATIONAL THERAPY: THE
CLIENT EXPERIENCE

You are invited to be in a research study of cultural competency in occupational therapy. You are a possible
participant because your cultural background is different from that of the occupational therapist who served
you within the past three years.

We ask that you read this form and ask any questions you may have before agreeing to be in the study.

This study is being conducted by: Peggy M. Martin, MS., OTR/L, Program in Occupational Therapy and the
Department of Work, Community and Family Education of the University of Minnesota. This study is
funded by the researcher.

Background Information

The purpose of this study is to learn about the patient or client experience in occupational therapy when the
occupational therapist is culturally different from the patient.

Procedures:

If you agree to participate in this study, we would ask you to do the following: 1) allow yourself to be
interviewed and audio taped when asked, "What is the meaning of cultural competency in occupational
therapy?" Typical interviews last 60 to 90 minutes. 2) review a written summary and analysis of your
interview to be sure that the interview is accurate and true to your meaning. After reading this document (or
permitting the document to be read to you), participate in a second interview of approximate 60 minutes in
length, again asking about your cultural experience in occupational therapy.

Risks and Benefits of being in the Study

The study has the following risks. You may remember a healthcare visit that resulted in feelings of distress.
If this should happen, feel free to discontinue the interview by asking me to stop or by turning off the tape
recorder.

There are possible indirect benefits from the impact that this study might have on die knowledge about
effective occupational therapy.

Confidentiality:

The records of this study will be kept private. In any publications or presentations, we will not include any
information that will make it possible to identify you as a subject. Research records will be stored securely
and only researchers will have access to the records. Only the researcher will have access to audio
recordings during the study. Segments of audio recordings or typed text of your interviews may be used for
future educational purposes unless you indicate otherwise. All written text will be identified by code name
only. Audio recordings will be erased at the conclusion of the study. The records of this study will not

TRBCodeH 0512P77786
Version Date: lof2
 202
become a part of your medical record. Your record for the study may. however, be reviewed by departments
at the University with appropriate regulatory oversight. To these extents, confidentiality is not absolute.
Research records will be stored securely and only researchers will have access to the records.

Voluntary Nature of the Study:

Participation in this study is voluntary. Your decision whether or not to participate in this study will not
affect your current or future relations with the University or Fairview-University Medical Center. If you
decide to participate, you are free to withdraw- at any time without affecting those relationships.

Contacts and Questions:

The researchers conducting this study are Peggy M. Martin. MS.. OTR/L under the advisement of Rosemarie
Park. PhD. You may ask any questions you have now. or if you have questions later, you are encouraged to
contact them at (612) 626-4358: marti370a.iimn.edu (principal investigator) or 612-625-6267.
parkx002<<7:umn.edu (advisor. Rosemarie Park. PhD).

If you have any questions or concerns regarding the study and would like to talk to someone other than the
researcher(s). you are encouraged to contact the Fairview Research Helpline at telephone number 612-672-
7692 or toll free at 866-508-6961. You may also contact this office in writing or in person at Fairview
University Medical Center - Riverside Campus. #815 Professional Building. 2450 Riverside Avenue.
Minneapolis. MN 55454.

You will be given a copy of this information to keep for your records.

Statement of Consent:

I have read the above information. I have asked questions and have received answers. I consent to participate
in the study.

Signature: Date:

Signature of parent or guardian, Date:

(If minors are involved)

Signature of Investigator: Date:

IRBCode* 0 5 1 2 P 7 7 7 8 6 t
Version Date: 2 of 2
83 FAIRVIEW
Fail-view Health Services
203

245QRimraktoAiMnu*
Mhnmfwfa.MN 554S4-1396
T«t:«12-«72-*MO

Month/Date, 2006

Dear Patient,

This letter is to notify you of a research opportunity.

Our records indicate that you have received occupational therapy services within the past
year and could potentially be eligible to participate in a research study that may help
occupational therapists provide more culturally competent care.

This research is sponsored by the University of Minnesota and will survey the experience
of receiving occupational therapy when die therapist is culturally different from the
patient Participation will involve two interviews sessions with the researcher and can be
scheduled at a convenient time and location.

If you are interested in participating, or want more information about this study, please
contact the reseacher, Peggy Martin at 612-626-4358 fmarti370@umn.echj) and leave
your name, phone number and the best time to contact you. If you are reluctant to
contact the researcher directly, but prefer that I contact the researcher for you, please
contact me at 612-273-7282 or return the enclosed volunteer form.

Participation is always voluntary. If you volunteer for a research study and then change
your mind, you are free to withdraw at any time. The researcher will explain all
anticipated benefits and risks associated with the research, as well as any potential for
discomfort.

To compensate for your time you will receive a $20 Target gift certificate after
completing the first interview and a $30 Target gift certificate after completing the
second interview.

Sincerely,

Peggy Mueller Brandenburg, Clinical Quality Consultant

Fairview Rehabilitation Services
 Phone Script for Initial Recruitment 204

The initial telephone script is:

Hello, my name is and I work for

Fairview University Medical Center. I understand that you
or someone in this household received occupational therapy services within the past year.
I want to offer you, or the past patient, the opportunity to participate in a research study
that will help occupational therapists provide more culturally competent care. This
research is sponsored by the University of Minnesota and will help us find more about
the experience of receiving occupational therapy when your therapist is culturally
different from yourself. You would be interviewed by a researcher at your choice of
location followed by a second interview at some later time- probably several months
from now. Both interviews will be audiorecorded. Any information that you provide
will be kept private so others will not know what you say. If you are interested in
participating, or want more information, please contact Peggy Martin at 612-626-4358
and leave your name and phone number or whatever is the best way to contact you to
further discuss your participation in the study.
 Letter for Recruitment 205

Past Patient name

Address

Dear [past patient of occupational therapy],

As a selected person who received occupational therapy within the past three years, I
offer you the opportunity to participate in a research project designed to help
researchers at the University of Minnesota learn more about culturally competent
occupational therapy service. If you are culturally dissimilar from your occupational
therapist you are eligible to participate in this study. As a research participant, you
would be interviewed by a researcher at your choice of location followed by a second
interview at some later time- probably several months from now. Both interviews will
be audiorecorded. Any information that you provide will be kept private so others will
not know what you say. If you are interested in participating, or want more
information, please contact Peggy Martin at 612-626-4358 (marti370@umn.edu) and
leave your name and phone number or whatever is the best way to contact you to further
discuss your participation in the study.

Sincerely,

Signature of Agency/ Organization representative

 Cultural Competency in Occupational Therapy: The Client Experience 206

I am interested in learning more about the study called "Cultural Competency in

Occupational Therapy: The Client Experience". I understand that I will be interviewed
by Peggy Martin, MS, OTR/L at a time and place of my choosing. I understand that the
interview will best occur at a location of few distractions and sufficient quiet to permit
recording.

I would like the interview to take place at:

(street address)

(City/ State)

(zip code)

(telephone where I can be reached)

I prefer to be contacted by: mail telephone.

Best times for the interview are: (include days of the week; time of day; specific dates).

(Print your name) (Sign your name)

Peggy Martin, MS, OTR/L (612-626-4358) will schedule a time and notify you by your
preferred method of contact. The interview will occur at your choice of location. When
you receive notice of the interview schedule and if it conflicts with your needs, please
contact me to reschedule.
 Phone Script after Screening by Health Care Provider, Agency Representative 207

This script only pertains when interested and potential subjects have requested of the
health care or agency representative that I contact the interested potential subject.

Hello, is this [name provided by the health care or agency representative]?. If the
named person does not answer the telephone then askfor a time when they may be
reached by telephone. Do not leave a message.

If the named person answers the telephone then continue with the script.
Your name was provided to me by [name of health care or agency] as someone
requesting further information about the research on cultural competency and
occupational therapy. Would you like to know more? [if yes, continue; if no, thank the
person, disconnect call and destroy contact information]
I understand that you or someone in this household received occupational therapy
services within the past three years. I want to offer you, or the past patient, the
opportunity to participate in a research study that will help occupational therapists
provide more culturally competent care. This research is sponsored by the University of
Minnesota and will help us find more about the experience of receiving occupational
therapy when your therapist is culturally different from yourself. You would be
interviewed by a researcher at your choice of location followed by a second interview at
some later time- probably several months from now. Both interviews will be
audiorecorded. Any information that you provide will be kept private so others will not
know what you say. You will receive as compensation for your time, a $20 Target gift
certificate after completing the first interview and a $30 Target gift certificate after
completing the second interview. Does this sound like something of interest to you?
[yes- continue; no- thank the person, disconnect call, destroy contact information]

May I schedule a time for the first interview?

Again, my name is Peggy Martin and I can be reached at 612-626-4358 should you want
to discuss anything about the study before your interview.
 Letter for Recruitment (11/28/05) 208

Past Patient name

Address

Dear [past patient of occupational therapy],

As a selected person who received occupational therapy within the past year, I offer you
the opportunity to participate in a research project designed to help researchers at the
University of Minnesota learn more about culturally competent occupational therapy
service. You are receiving this letter because our records indicate that you were
culturally dissimilar from the occupational therapist who served you at Fairview
University Medical Center. As a research participant, you would be interviewed by a
researcher at your choice of location followed by a second interview at some later time-
probably several months from now. Both interviews will be audiorecorded. Any
information that you provide will be kept private so others will not know what you say.
If you are interested in participating, or want more information, please contact Peggy
Martin at 612-626-4358 (marti370@umn.edu) and leave your name and phone number or
whatever is the best way to contact you to further discuss your participation in the study.

Sincerely,

Signature of Fairview University Medical Center

Occupational Therapy Representative