Escolar Documentos
Profissional Documentos
Cultura Documentos
A DISSERTATION
SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL
OF THE UNIVERSITY OF MINNESOTA
BY
December, 2007
UMI Number: 3295693
Copyright 2007 by
Martin, Peggy Mae
INFORMATION TO USERS
The quality of this reproduction is dependent upon the quality of the copy
submitted. Broken or indistinct print, colored or poor quality illustrations and
photographs, print bleed-through, substandard margins, and improper
alignment can adversely affect reproduction.
In the unlikely event that the author did not send a complete manuscript
and there are missing pages, these will be noted. Also, if unauthorized
copyright material had to be removed, a note will indicate the deletion.
UMI
UMI Microform 3295693
Copyright 2008 by ProQuest Information and Learning Company.
All rights reserved. This microform edition is protected against
unauthorized copying under Title 17, United States Code.
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
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
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
process when a client differs racially or ethnically from their occupational therapist.
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
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.
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
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
TABLE OF CONTENTS
Acknowledgments i
Dedication ii
Abstract iii
Table of Contents v
Summary ,. 119
Coda: 153
References 155
Appendix A 170
vii
List of Tables
Table III: Literature Recommendations the health care organization level .... 49
CHAPTER 1
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, 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
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
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
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
disparity in care. In all settings, however, these same researchers found that African-
contrast, occupational therapy and recreation therapy was ordered more often for African-
American patients receiving psychiatric care (Flaherty & Meagher, 1980). Skawski
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
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
that health insurance from their employer. Hispanics have the highest percentage of
13% of whites (James et al., 2007). Even among workers who receive health insurance
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).
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
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
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
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.
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,
worldview passes from one generation to another. When one interacts with someone who
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
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
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)
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
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
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.
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,
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
Stereotypes are "mental pictures based on myths that lead people to associate a
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
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
More recent theories suggest that intergroup conflict causes prejudice (Stark,
2003). Current theory suggests that racial and ethnic conflicts are a result of status
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
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
care were adapted from Cross, Brazon, Dennis, and Issaacs (1989) and adopted by the
11
governmental agencies, is
organization within the context of the cultural beliefs, behaviors, and needs
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),
(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
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
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).
between a client and a health care provider when their social categories are quite varied.
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
health disparities.
13
Occupational Therapy
disability (American Occupational Therapy Association [AOTA], 2005). Often the well-
increased mastery over the environment, improved mobility, and increased productivity
outcomes include improved client performance in daily tasks such as self-care, driving, or
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
engagement in life.
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
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
study of occupation and occupational therapy in Japan. She speculated that stronger
interpersonal power, virtues of working hard and enduring hardship, and values of
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
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
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)
literature. For example, Bonder, Martin, and Miracle (2004) offered a definition of
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
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
expectations, and that therapists may often not even seek out
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
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.
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
white middle class bias dominating the health professions, including occupational
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
occupational therapy service have differing perspectives. This study addressed the
research question, what is the experience receiving occupational therapy when clients
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
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
The literature review is divided into three main areas: a review of theories that
emphasizing the need to teach cultural competence to health professions students, and an
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
recommendations for cultural competent care, but only a few models emerged to explain
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.
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).
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
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
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
Theories included in this analysis are those that self-identified as models having
concepts. Models were analyzed using the five key features of a theoretical model
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
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
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
of cultural competence in various health care fields. It is anticipated that such models
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
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).
cross-cultural clinical encounters. The model draws from anthropology and specifically
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
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
understanding and is always time and context bound. The strength of this model is its
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
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
community members in treatment, (8) immersion into another culture, and (9)
Clear causal statements are made between concepts in the belief that specific use of
competent techniques should lead to changes in clinician and patient behavior which
should lead to better provision of appropriate health care services. Appropriate health
care (diagnosis and treatment), and increased patient education on how to follow
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
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
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
HealthCare Professionals (IAPCC). The author reports acceptable construct and content
the questionnaire was reported. Research that supports the relationship between level of
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
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
care repatterning or restructuring care to specifically meet clients' health needs" (p. 41).
professional actions and decisions that help clients retain their care values and beliefs.
decisions that help clients adapt to or negotiate with the culture of others, most likely that
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).
care provider level. Other models explain how care providers learn these skills. Each of
Wells and Black (2000) designed a specific model to develop the competency of
this model differs in its goal of teaching rehabilitative health care practitioners how to
differences" (p. 175). This model builds upon paradigms of cultural pluralism and the
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
information on various cultural groups. Although the authors state that improved health
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
Intercultural Competence
Stoy (2000) attempted to improve health education, public health practice, and,
ultimately, health status with his model of intercultural competence. This paradigm
intercultural relationship, mutual feelings of respect and cooperation, efficient tasks, and
minimal stress in intercultural interactions. The model states that health educators need
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
was cited to support this model, accounts in the literature support outcomes of better
Bernsen, & Bruijnzeels, 2003; Xuequin, 2000). Table 1 compares this model to those
Combined, the cultural competency model (Wells and Black, 2000) and the
intercultural model by Stoy (2000) guide development in the knowledge, skills, and
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.
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
divided into strategies aimed at the client-practitioner level, the healthcare organization
connections between the individual healthcare provider and the problem of health
disparities. Three recommendations appear repeatedly in the literature. First, the need to
(Betancourt, Green & Camillo, 2002; Brach & Fraser, 2000; Cooper & Rowe, 2004;
Institute of Medicine, 2002a; Kamat, 1999; Office of Minority Health, 2001; Schuchman,
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 &
Second, there is a need to use interpreters and other language systems during
(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
provide optimal care (Campinha-Bacote, 1999; Cross, Bazron, Dennis, & Isaacs, 1989;
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
exams, immunizations, etc.), hand-washing, habits of charting, and the use of jargon.
that these values and beliefs are tacit to the health care worker and do not readily apply to
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
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
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
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.
"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-
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
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)
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.
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
literature were from this category. The five recommendations noted here are represented
minority groups in navigating the health care system and to foster their increased
collection and analysis procedures to include data on health care access and utilization
merge with larger collections of data regarding health disparities (Betancourt, Green &
Minority Health, 2001). Health organizations would then use this data in strategic
planning and designing quality improvement efforts (Betancourt, Green & Castillo, 2002;
organizations are called to train all staff in the provision of culturally competent care
Minority Health, 2001). Lastly, health organizations ought to enlist members of the
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
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
context cultures (Hall, 1976; 1984) could support this aspect of the curriculum. The
sensitivity, tolerance, and acceptance. Frequently, the use of learning activities that
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
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
patient satisfaction with the clinical encounter. Although theorized, there is no empirical
evidence that associates gains in cultural competence with reduced health disparities,
level, and the educational level were identified. Recommendations included maximizing
mutual understanding between client and healthcare provider through the use of
competency factors into strategic planning and organizational outcome evaluation plans.
38
A final recommendation was to add training to staff and entry-level professional
seminars and entry-level curricula were tallied in an effort to see trends and best
practices.
all people. Clearly, each process in a healthcare system needs to examine discipline-
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
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
culturally competent practices are identified, educational systems must determine most
effective strategies for training both entering practitioners and existing health care
competent health care. Funding awards and political support must continue to maintain
The following chapter outlines the research methodology proposed to study the
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 • Developing intercultural competence is an ongoing
education, public exists when practitioners process.
health practices, feel successful in their • Health educators need a working knowledge of culture
and ultimately relations with others from and its functions
health status. different cultures; feelings • Learning about other cultures occurs best in the
of respect and cooperation following order: increase knowledge about cultures,
are mutual; tasks are added awareness of the role of culture in interpersonal
efficient; and stress is
minimized. relations and accepting the emotional challenge to
confront own biases, weaknesses, and stress.
ON
47
Table 2
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
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
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
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
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
51
Table.4
Enforce civil rights laws and Title VI requirements Betancourt et al., 2002; Institute of
Medicine, 2002a
Immersion into another culture Black, 2002; Brach & Fraser, 2000
More research to identify sources of health Cooper & Powe, 2004; Institute of
disparities and to assess intervention strategies Medicine, 2002a
Federal and state support for interpreter services Betancourt et al., 2002
Knowledge
Students should:
Students should:
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:
confront biases, weakness, and stress regarding cross- Barrett, 2002; Bamberg, Pitts &
cultural encounters. Maloney, 2002; Cooper & Powe,
2004; Stoy, 2000
PHENOMENOLOGY
understanding the experience of receiving occupational therapy when there are racial or
ethnic differences between client and therapist. Phenomenology was selected because of
Ponty, 1962). As a philosophy it is transcendental, recognizing that there are many ways
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
work of Max van Manen who describes a practical writing approach to the method of
hermeneutical phenomenology.
Purpose of Phenomenology
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)
"phenomenology describes how one orients to lived experience" (p.4), an attempt to gain
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
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
The concept of "lifeworld" is critical to this research because of the central nature
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
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
clients who look different than their therapist by skin color, language, or other ethnicity
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
explicit. Giorgi (1997) elucidates Husserl's view of intentionality as the essential feature
an object that transcends the consciousness (Giorgi, 1987). Giorgi further explains this as
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
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
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
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
as the constant identity that holds the meaning together. He supports the use of "free
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
chair. In this way it is contextualized and depends upon the unique perspective of the
researcher.
text and again as the structure unfolded regarding the phenomena of receiving
occupational therapy when cultural disparity exists between client and therapist.
Openness
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
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
the putting aside of past knowledge of the phenomenon in order to be fully present and
It is a break from the assumption of objectivity of the researcher, an attempt to make the
and presuppositions inherent from their stance within a discipline prior to analyzing their
researched and include those assumptions about how the research ought to be conducted
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
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
sympathize with the medical condition and the process of therapy, I feared that it could
scientific attitude, I bracketed motives connected to my language and beliefs about best-
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
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
included my understandings of non-white patients and clients in the health care system,
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
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
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.
brought certain assumptions for the outcomes of this research. By making these
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
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
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
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.
that is ideational rather than empirical, and a "philosophy of intuition" (Giorgi, 1987).
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
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
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
researcher's bias to foster solid description and analysis. Dahlberg (2001) cites Linstrom
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
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
being interviewed. I realized during my second interview that having only disclosed my
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
and then asked if there was anything else they wanted to add. I seemed to move from a
make things better for people who receive occupational therapy. My experience
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
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
contributed to the authenticity of this method. The act of translation identified biases that
an occupational therapist required more bracketing than those of a scientist. I can only
a time to step back and reflect in the search for accurate descriptions of experience.
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
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
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
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
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
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
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,
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
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
and other campus agencies serving students and communities of people with disabilities.
The duration of time since receiving occupational therapy intervention was also increased
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
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
Text
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
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
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
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
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
of thinking about a point. In this way I used an interview process that came close to
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?"
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
know, you kind of want to come home and put your bare feet down in the carpet,
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
noted thoughts as they came to mind, reactions to the quality of the text, statements that
My analysis of the text was heavily influenced by the work of Giorgi (1997), who
as they are presented" (p. 241). From this perspective all text analysis requires the
holistically reading the verbatim transcription of the interviews. It is the beginning of the
"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
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
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
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
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
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
"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,
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
.. .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
this text asked of me is if the meaning is about feeling comfortable or if it is about getting
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
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
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
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
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
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
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
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
.. ..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).
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
Dahlberg (2001), this is the point where the content obtained from free imaginative
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
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
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
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
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
"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
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
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
therapy in their body. One example of how a participant experienced the phenomenon in
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
Lived time is subjective, that which speeds up or slows down despite the pace of
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
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
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
dialogue with the text as I analyzed meaning units within each text, and it affected how I
understandings while at the same time identifying the unique variation in the
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
what is the experience of receiving occupational therapy when the client is racially or
understand another's life experience. This section described how the methodology of
phenomenology was used in this study. The following chapter will describe those
83
expressions of meaning that comprise the structure of the phenomenon of receiving
therapy.
84
CHAPTER 4
EXPRESSION OF MEANING
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
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
individually, a common structure emerged from the experiences of the five individuals
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
"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
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
85
because of the pain. She received therapy from an outpatient clinic that specialized in
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
balance disorder.
conditions.
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.
occupational therapy occasionally across her lifespan to maximize daily living skills, a
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.
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
personal history, beliefs about healthcare, and fear of the impending experience, as well
of therapy into their daily lives and spoke of changing selves with feelings of joy and
happiness.
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
87
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
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.
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
Coming to Therapy
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
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
Amina expressed the discomfort experienced when not able to hold her baby, an
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,
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
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
89
and what I like to do, bowl, I couldn't do that, still haven't done that so
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
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
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
While each participant had a different story, each used words such as "worry,"
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
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
Smiley, who attended therapy because of a back injury, used words including
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,
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
Eagle Cloud spoke for all people with disabilities who have received occupational
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
Missy, a woman receiving occupational therapy for a back injury, also spoke of
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
described concern over health insurance coverage, with a long wait required before
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!
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
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
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.
93
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
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
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
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.
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.
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'
Missy, who received therapy from the same clinic as Smiley, also spoke of being
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
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
96
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
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
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
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
97
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
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
magazines, fancy coffees, and access to massage chairs for waiting individuals were all
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
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
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.
99
Amina spoke of having to do things here that were against her culture or against the
way
(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
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
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
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
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
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
what I could see during my time of therapy there, I think that there's a standard
Two participants described the situation when client and therapist share the same
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
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,
spirituality and you know, culture, [discussion about social work and placement
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
103
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
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
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
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
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
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
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
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
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
106
there you see all kinds of clients there come through there. It was like amazing-
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.
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
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
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
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
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
108
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
and there where you know how to be treated. It'd be kind of hard to keep some
people.
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 cared for. Individuals felt cared for when therapists interacted in a ways
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
109
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
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
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
110
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
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
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
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
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
112
very patient with themselves so the people around them need to learn to be
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
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
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
feeling cared for. Amina and Missy both described a closeness, an intimacy that
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
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.
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
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
114
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.
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
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,
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
comes to mind it reminds me of a - 1 went to a marshal arts class and this was
115
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
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,
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.
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
116
while they was pressing your body and everything, they was talking to you. It
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.
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
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
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
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
117
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
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
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
118
when I act like I'm a 10-year-old. Or there are days when I act like I'm a 3-
Amina spoke of a desire for health professionals to see her as unique from the
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.
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
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
Later, he described the experience of receiving best-practice therapy with the metaphor
of a puzzle.
119
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
They made it a point to work together to do this so that's you know, why I kept
certain people just wanted to, you know, participate. It was a good thing and
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
Summary
client and occupational therapist are racially or ethnically distinct contains six major
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
120
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
experience. Put Yourself in My Shoes describes the nature of therapy encounters over
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
DISCUSSION
space, lived body, lived time, and lived human relation; and theories generated in the
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
Coming to Therapy
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
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
(2006) "the consciousness of the body invades the body, the soul spreads over all its
123
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
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
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
analysis (Clementi, 2006). Participants in this study also used words such as "worried",
124
"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.
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
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,
directed toward solving problems presented by the client. When an encounter is patient-
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
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
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.
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
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
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
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
time when in therapy and the willing prioritization of time spent in therapy over other
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
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.
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
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
found that patients frequently wanted to feel respected by their doctors, including the
encounters. They found that immigrant patients and their primary care physicians mostly
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
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
129
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
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.
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
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
some people because you have two battles. You have the disability and then you have
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
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
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
131
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.
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
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
influences what people do, what they say, and how they use the things around them
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"
133
(Taylor, 1871), culture is dynamic and constantly changing. In this research, culture was
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.
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
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
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
134
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
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
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
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
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
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
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
experience as if they were the object of the therapy. Eagle Cloud describes what it is like
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.
when clients and families are respected for their choices; have ultimate responsibility for
decisions about their occupational therapy services; are informed, comforted, and given
137
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
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"
"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
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
138
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
mutual relationship with the therapist. The ability to be caring was described almost as
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
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
interpersonal relations (le Roux, 2002; Rosa & Hasselkus, 2005; Wilson, 2000).
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,
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.
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
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
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
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
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
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
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.
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
(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
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
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
.. ..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.
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
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
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
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.
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
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.
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.
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
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
and obtains information about another's culture, verifies generalizations about the client,
and providers culturally specific care. Participants in this study wanted to experience
This stage model of is reminiscent of the Johari Window (Luft and Ingham, 1955)
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
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
Chapter six will reflect upon study limitations, thoughts for future research and
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
There are several limitations to this study. Text for this study was dependent
These interviews became text used analysis and interpretation. This study is only as rich
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
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
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
intimacy upon this disclosure. I also suspect that my middle-aged, grey haired female
It was difficult to solicit volunteers for this study when recruitment depended
upon therapist identification of possible participants who met basic study criteria;
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
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
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
also important that future research look at the experience of both the recipient and the
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
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
feedback mechanisms to identify gaps between what is and what ought to be. Given a
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
ought to commit to this philosophy and approach to practice. Caring is more than
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
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
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
CODA
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
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.
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
therapist. I believe that the tenets of intention, openness, listening, elucidating meaning,
154
healthcare for all Americans (Publication code PC00573). Merrifield, VA: U.S.
Administration.
"[Culture]." The American Heritage® Dictionary of the English Language, 4th ed.
American Medical Association. (2004). Health professions education data book 2004-
www.amaassn.org/ama/pub/category/10250.html.
http://www.aota.org.
Bamberg, R., Pitts, B.B., Maloney, E.M. (2002). Curriculum resources for cultural
Banks, J.A. (1997). Educating citizens in a multicultural society. New York, NY:
Betancourt, J.R. & Green, A.R. & Camillo (2002). Cultural competence in health care:
16(2), 32-40.
Black, R.M. (2002). Occupational therapy's dance with diversity. American Journal of
Blanche, E.I. (1996). Alma: Coping with culture, poverty and disability. American
Bonder, B., Martin, L., & Miracle, A. (2004). Culture emergent in occupation. American
Bonder, B., Martin, L. & Miracle, A. (2002). Culture in clinical care. Thorofare, N.J.:
Slack.
Brach, C. & Fraser, I. (2000). Can cultural competency reduce racial and ethnic health
Cena, L., McGruder, J., & Tomlin, G. (2002). Representations of race, ethnicity, and
Clark, L., Zuk, J., & Baramee, J. (2000). Education department: A literary approach to
289(a), 1143-1149.
Committee on Institutional and Policy-level Strategies for Increasing the Diversity of the
www.nap.eud/catalog/10895 .html
Cooper, L.A. & Powe, N.R. (2004). Disparities in patient experiences, health care
processes, and outcomes: the role of patient-provider, racial, ethnic, and language
www.cmuf.org.
158
Costa-Alonso, C , Zafra-Mezcua, J.A., Botella-Rodriguez, M., & Novalbos-Ruiz, J.P.
Cross, T., Bazron, B., Dennis, K., and Isaacs, M. (1989). Towards a culturally competent
Dahlberg, K., Drew, N. & Nystrom, M. (2001). Reflective lifeworld research. Lund,
Sweden: Studentlitteratur.
Dieppe, P., Rafferty, A., and Kitson, A. (2002). Guest editorial: The clinical encounter-
Jones (Eds.), Sociology & occupational therapy: An integrated approach (pp. 67-
Douglas, M. (2004). Traditional culture - Let's hear no more about it. In V. Rao & M.
Walton (Eds.). Culture and public action (pp. 85-109). Washington: The World
Bank.
Ekelman, B., Bello-Haas, V.D., Bazyk, J., & Bazyk, S. (2003). Developing cultural
46, 679-683.
April/May/June: 38-42.
Flaherty, J.A. & Meagher, R. (1980). Measuring racial bias in inpatient treatment.
Gadamer, H. (1996). Truth and method. (2nd ed.) (J. Weinsheimer & D. G. Marshall,
Giorgi, A. (1997). The theory, practice, and evaluation of the phenomenological method
(2), 235-260.
Hall, E.T. (1976). Beyond culture. Garden City, NY: Anchor Books.
Hall, E.T. (1984). The dance of life: The other dimension of time. Garden City, NY:
Anchor Books.
Hall, J.R., Heitz, M.J., Battani, M. (2003). Sociology on culture. New York, NY:
Routledge.
Harmsen, H., Meenwesen, L., Wieringen, J., Bernsen, R., & Bruijnzeels, M. (2003).
and parents of child patients. Patient Education and Counseling, 51, 99-106.
works: Using cultural competence to improve the quality of health care for
Health Resources and Services Administration (HRSA). (2002). HRSA Care Action:
Publications.
Hoenig, H., Rubensteinm, L., and Kahn, K. (1996). Rehabilitation after hip fracture:
Equal opportunity for all? Arch Phys Med Rehabil, 77, 58-63.
451-458.
from www.nap.edu.
http://www.nap.edu/openbook/030908265X/html.copvright2002.2001
Science.
Iphofen,, R. (2000). Caring about learning while learning about caring: Coping with
James, C , Thomas, M., Lillie-Blanton, M., & Garfield, R. (2007). Key facts: Race,
ethnicity and medical care: Kaiser Foundation. Retrieved October 3, 2007 from
http://vvww.kff.org/minorityhealth/upload/6069-02.pdf.
Jibaja, M.L., Sebastian, R., Kingery, P., & Holcomb, J.D. (2000). The multicultural
Closing the Gap, May/June, 8-9, Rockville, MD: Department of Health and
(2), 174-184.
Kottow, M.H. (2001). Between caring and curing. Nursing Philosophy, 2, pp.53-61.
Kottak, C.P. and Kozaitis, K.A. (2003). On Being Different: Diversity and
Higher Education.
Larson, E., Wood, W., & Clark, F. (2003). Occupational science: Building the science
Cohn, & B.A.Boyt Schell (Eds.), Willard and Spademan's occupational therapy
Leininger, M. (1997). Overview of the theory of culture care with the ethnonursing
Ludmerer, K.M. (1999). Time to heal: American medical education from the turn of the
century to the era of managed care. New York, NY: Oxford Press.
Luft, J. and Ingham, H. (1955). The Johari window, a graphic model of interpersonal
Communications across cultures (2nd ed). New York, NY: Harper Collins
College Publishers.
Martin, L., & Bonder, B.R. (2003). Achieving organizational change within the context
under domestic violence: The intersections of race, class, gender, and racism.
therapy. In M.E. Neistadt & E.B. Crepeau (Eds)., Willard and Spackman 's
McGruder, J. (2003). Culture, race, ethnicity, and other forms of human diversity in
occupational therapy. In E.B. Crepeau & B.B. Schell, Willard & Spackman's
Routledge.
w.com.
Miksch, K.L., HIgbee, J.L., Jehangir, R.R., Lundell, D.B., Bruch, P.L., Siaka, K.W.,
Musil, CM., Garcia, M., Hudgins, C.A., Nettles, M.T., Sedlacek, W.E., & Smith, D.G.
165
(1999). To form a more perfect union: Campus diversity initiatives:
http://soeweb.svr.edu/thechp/multovwl.htm
Rehabilitation.
Office of Minority Health. (2001). National standards for culturally and linguistically
Office of Minority Health. (2000). Closing the Gap. Rockville, MD: Department of
Oxford Dictionary and Thesauras American Edition. (1996). New York: Oxford
University Press.
Padilla, R. (1999). Culture and patient education: Challenges and opportunities. Journal
Parsons, T. (1951). The social system. London: Routledge & Kegan Paul.
Parsons, T. (1966). Illness and the role of the physician: A sociological perspective. In
W.R. Scott & E.H. Volkart (Eds.), Medical care: Readings in the sociology of
166
medical institutions . New York: Wiley.
Patton, M. (1990/1980). Qualitative evaluation and research methods 2nd ed. Newbury
F.A. Davis.
Exploring the Breadth of Human Experience (pp. 41-58). New York: Plenum
Press.
"[Prejudice]." The American Heritage® Dictionary of the English Language, 4th ed.
Purnell, L, (2000). A description of the Purnell model for cultural competence. Journal
Purnell, L. (2002). The Purnell model for cultural competence. Journal of Transcultural
Reid, D., Angus, J., McKeever, P. & Miller, K. (2003). Home is where their wheels are:
Therapy, 57,186-195.
Reynolds, P.D. (1971). A primer in theory construction. New York, NY: Macmillan
Publishing.
Rosa, S.A. and Hasselkus, B.R. (2005). Finding common ground with patients: The
208.
167
Rosenberg, E., Richard, C , Lussier, M., and Abdool, S. (2005). Intercultural
Rosenblatt, R.A. (2004). A view from the periphery - Health care in rural America. New
Roush, C.V., and Cox, J.F. (2000). The meaning of home: How it shapes the practice of
Mental Health Providers Network and the Council on Asian Pacific Minnesotans.
Shah, M.A., Robinson, T.C., & Enezi, N.A. (2002). International allied health education
Spector, R.E. (2000). Cultural Diversity in Health and Illness (5th ed). Upper Saddle
Stark, R. (2004). Sociology (9th ed.). Belmont, CA: Wadsworth/ Thomson Learning.
Stoy, D.B. (2000). Developing intercultural competence: An action plan for health
Suchman, E.A. (1965, fall). Stages of illness and medical care. Journal of Health and
Swenson, M.M. (1998). The meaning of home to five elderly women. Health Care for
Swenson, S.L., Zettler, P., and Lo, B. (2005). 'She gave it her best shot right away":
Thomas, K.R., & Weinrach, S.G. (1998). Multiculturalism, cultural diversity, and
65-75.
U.S. Census. (2001). Population change and distribution, 1990-2000. Retrieved August
van Manen, M. (1990). Researching lived experience: Human science for an action
Watson, R.M. (2007). WFOT 2006 Congress: Keynote speech: Being before doing:
The cultural identity (essence) of occupational therapy. The Bulletin of the World
65-72.
Therapy Association.
Wells, S. & Black, R. (2000). Cultural competency for health professionals. Bethesda,
and teachers. The role of culture, language, and voice (Doctoral dissertation,
9981798).
Winn, J.M. & Riehl, G.K. (2001). Incorporating transcultural care education in allied
Wittman, P. & Velde, B.P. (2002). The issue is: Attaining cultural competence, critical
Wlodkowski, R.J. & Ginsberg, M.B. (1995). Diversity and motivation: Culturally
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 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
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.
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:
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
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.
ADMINISTRATIVELY
APPpQ\(ED
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 175
*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:
Fax:
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
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
i Fax:
•
U of M Employee/Student ID: j Email:
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
*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
Fax:
i
U of M Employee/Student ID: ! Email:
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
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
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
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.
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
4.1 Do any of the Investigators or personnel listed on this research have a potential conflict of
interest associated with this study?
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.
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?
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
i References j
| American Medical Association (2004). Health Professions Education Data Book 2004-2005. American j
Medical Association. Availableatwww.ama-assn.org/ama/pub/category/10250.html. j
American Occupational Therapy Association (2005). Retrieved May 1, 2005 from http://www.aota.org. •
I • I
Barrett, K. (2002). Facilitating culturally integrated behaviors among allied health students. Journal of i
Allied Health, 31,93-98. !
Betancourt, J.R. & Green, A.R. & Camillo (2002). Cultural competence in health care: emerging |
frameworks and practical approaches. Field report. The Commonwealth Fund. Available at
www.cmwf.org. Retrieved 7/30/04. i
I !
j Black, R.M. (2002). Occupational therapy's dance with diversity. American Journal of Occupational :
Therapy, 56, 140-148. '
i :
! '
1
Blanche, E.I. (1996). Alma: Coping with culture, poverty and disability. American Journal of
Occupational Therapy, 50, 265-276. j
! Bonder, B., Martin, L, & Miracle, A. (2004). Culture emergent in occupation. American Journal of
Occupational Therapy, 58, 159-168.
Bonder, B., Martin, L. & Miracle, A. (2002). Culture in clinical Care. Thorofare, N.J.: Slack.
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD
review and conceptual model. Medical Care Research and Review, 57 (suppl. 1), 181-217.
Cena, L., McGruder, J., & Tomlin, G. (2002). Representations of race, ethnicity, and social class
examples in The American Journal of Occupational Therapy. American Journal of Occupational
Therapy, 56,130-139.
Collier, M.J. and Thomas, M. (1988). Cultural identity: An interpretive approach. In Y.Y. Kim and W. B.
Grudykunst (eds.), Theories in Intercultural Communication (p. 103). Newbury Park, CA: Sage,
Cooper, L.A. & Powe, N.R. (2004). Disparities in patient experiences, health care processes, and
; outcomes: the role of patient-provider, racial, ethnic, and language concordance. The Commonwealth
j Fund. Retrieved on July 30, 2004, from www.cmuf.org.
i
| Cross, T., Bazron, B., Dennis, K., and Isaacs, M. (1989). Towards a culturally competent system of care,
| volume I. Washington, D.C.: Georgetown University Child Development Center, CASSP Technical
I Assistance Center.
I Evans, J. (1992). Nationally speaking - What occupational therapists can do to eliminate racial barriers i
! to health care access. American Journal of Occupational Therapy, 46, 679-683. ,
I !
I Geertz, C.(1973). The interpretation of cultures. New York: Basic Books. [
!
i I
! Gillapsie, T. (2005, March). Minnesota demographic change and changing families. Paper presented at ;
: the Minnesota Children's Summit 2005: Smart Policies, Strong Families, Minneapolis, Minnesota. !
Giorgi, A. (1997). The theory, practice, and evaluation of the phenomenological method as a qualitative !
research procedure. Journal of Phenomenological Psychology, 28 (2), 235-260.
\ Harmsen, H., Meenwesen, L., Wieringen, J., Bernsen, R., & Bruijnzeels, M. (2003). When cultures
meet in general practice: intercultural differences between DPs and parents of child patients. Patient I
' Education and Counseling 51, 99-106.
; Health Resources and Services Administration (HRSA). (2001). Cultural competence works: Using
! cultural competence to improve the quality of health care for diverse populations and add value to '
managed care arrangements. Rockville, MD: Health Resources and Services Administration. |
Health Resources and Services Administration (HRSA). (2002). HRSA Care Action: Providing HIV/AIDS
\ care in a changing environment. Washington, D.C.: U.S. Department of Health and Human Services. \
Institute of Medicine. (2002a). U.S. Committee of Communication for Behavior Change in the 21 st
' Century: Improving the Health of Diverse Populations. Speaking of health: Assessing health
1
communication strategies for diverse populations. Washington, D.C.: The National Academies Press. j
Retrieved August 1, 2004 from www.nap.edu.
Institute of Medicine. (2002b). Unequal treatment: Confronting racial and ethnic disparities in health
care. Washington, D.C.: The National Academy of Science. Retrieved August 9, 2004 from
UNIVERSITY OF MINNESOTA INSTITUTIONAL REVIEW BOARD 186
Jibaja. M L , Sebastian, R., Kingery, P., & Holcomb, J.D. (2000). The multicultural sensitivity of physician
assistant students. Journal of Allied Health, 29, 79-85.
Kamat, MR. (1999). Educating health professionals: Are we failing minorities? Closing the Gap,
!
May/June, 8-9, Rockville, MD: Department of Health and Human Services, Office of Minority Health.
Kluchhohn, F.R. & Strodtbeck, F.L. (1960). Variations in Value Orientations. Evanston, IL: Row,
Peterson.
Kondo, T. (2004). Cultural tensions in occupational therapy practice: Considerations from a Japanese j
I vantage point. American Journal of Occupational Therapy. 58 (2), 174-184.
' Larson, E., Wood, W., & Clark, F. (2003). Occupational science: Building the science and practice of j
! occupation through an academic discipline. In .E.B. Crepeau, E.S. Cohn, & B.A.Boyt Schell (Eds.), !
Willard and Spackman's occupational therapy (10th ed., pp. 15-26). Philadelphia: Lippincott Williams & I
Wilkins. ''
• !
[ 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
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.
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 :
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
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.
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)
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:
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
8.4 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
9.1 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.
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:
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
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?
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.
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).
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.
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
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.
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.
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.
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.
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:
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,
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,
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,
(street address)
(City/ State)
(zip code)
Best times for the interview are: (include days of the week; time of day; specific dates).
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]
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,