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What we come with

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Title:
What we come with an ethnographic assessment of barriers to accessing health care in refugees resettled in Denver, Colorado
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Flemming, Jennifer L
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English
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Subjects / Keywords:
Medical anthropology ( lcsh )
Refugees -- Health and hygiene ( lcsh )
Refugees -- Colorado -- Denver ( lcsh )
Medical anthropology ( fast )
Refugees ( fast )
Refugees -- Health and hygiene ( fast )
Colorado -- Denver ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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This paper examines the challenges faced by Denver's refugee population as individuals navigate the American health care system. Personal health care experiences in both country of origin and the U.S. are comparatively explored, emphasizing a wide-spectrum of experience. This paper assesses refugees' perceptions of barriers to obtaining health care, and how measures of acquired capital facilitates the individual's ability to overcome these barriers. The lack of agency possessed by all participants highlights the structural nature of health care acquisition for the socio-economically disadvantaged in the United States, and is further developed in relation to the resettlement process and health systems in particular.
Bibliography:
Includes bibliographical references.
Statement of Responsibility:
by Jennifer L. Flemming.

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|University of Colorado Denver
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University of Colorado Denver

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Full Text
WHAT WE COME WITH:
AN ETHNOGRAPHIC ASSESSMENT OF
BARRIERS TO ACCESSING HEALTH CARE IN
REFUGEES RESETTLED IN DENVER, COLORADO
by
Jennifer L. Flemming
B.A., Tufts University, 2006
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Master of Arts
Anthropology
2011


The thesis for the Master of Arts
degree by
Jennifer L. Flemming
has been approved
by
Steve Koester
Jean Scandlyn
Sarah Horton
12/05/2011


Flemming, Jennifer L. (M.A., Anthropology)
Health and Adaptation: An Ethnographic Assessment of Barriers to Accessing
Health Care in Refugees Resettled in Denver, Colorado
Thesis directed by Professor Steve Koester
ABSTRACT
This paper examines challenges and barriers faced by refugees in Denver,
Colorado as individuals navigate the American health care system. Personal
health care experiences in both country of origin and the U.S. are comparatively
explored, emphasizing both the diverse range of experience and the relevance of
the individual circumstance of the refugee in assessing efficacy of health services.
The project documents the interconnected nature of culture, socioeconomic status,
social networks, and language skills in evaluating the efficacy of health care
obtained by newly resettled refugees.
Utilizing ethnographic methods, this paper assesses refugees perceptions
of barriers to obtaining health care and how measures of acquired capital facilitate
the individuals ability to overcome these barriers. The lack of agency possessed
by all participants highlights the structural nature of health care acquisition for the
socio-economically disadvantaged in the United States, and is further developed
in relation to the resettlement process and health systems in particular.
This abstract accurately represents the content of the candidates thesis. I
recommend its publication.
Steve Koester


DEDICATION
I wish to dedicate this thesis to Abraham, always smiling in the face of an
overwhelming and lonely journey.


ACKNOWLEDGEMENT
I wish to thank Steve Koester, Jean Scandlyn, and Sarah Horton for the guidance
and freedom provided as my thesis committee. In addition, many thanks to Luke,
Jamal, and Hader for delivering insight, patience, and dedication on a daily basis
in our office at the VOLAG. Above all, thank you to my honest and enthusiastic
study participants who welcomed me into their homes and lives on numerous
occasions, and never without the most genuine of hospitality.


TABLE OF CONTENTS
Tables...............................................vii
CHAPTER
1. INTRODUCTION.......................................... 1
The Refugee Resettlement System........................3
Refugees in Denver, CO.................................5
Literature and Anthropology........................... 6
Methods................................................9
2. HEALTH SYSTEMS AND REFUGEES.......................... 17
The VOL AG and Agency................................ 17
Medicaid............................................. 19
Moving Towards Agency.................................21
Health, Habitus and Adaptation........................23
3. HEALTH AND CAPITAL....................................28
Forms of Capital......................................29
Transcultural Capital.................................34
4. COMPARATIVE HEALTH SYSTEMS........................... 36
Liminality, Refugee Camps and What We Come With
39


5. BARRIERS TO ACCESS...................................43
Language.............................................44
Economy..............................................46
Transportation.......................................48
6. CONCLUSIONS......................................... 50
Recommendations......................................55
APPENDIX
A. Research Materials................................. 58
In-depth Interview Questionnaire.....................58
Survey 1.............................................59
B. Human Subjects Approval.............................60
REFERENCES.................................................... 62


TABLES
Table I: Study Participants for In-depth Interviews......................12
Table II: Survey II......................................................31
Table III: Summary of Survey II Findings................................. 33
Table IV: Barriers to Accessing Care.....................................43


CHAPTER ONE
INTRODUCTION
Emmanuel comes from the Congo; he is 64 years old and a former
headmaster of a prestigious, private boys school in Kinshasa. It
has been closed for years now. Emmanuel speaks six languages
and, he tells me, has always thrived in the academic lifestyle. We
are driving home from the opthamologist, navigating the busy
streets of downtown Denver while he tells me stories of Congo. His
face is glued to the passenger side window, finally able to take in
the colors and motion of the city now that he has new glasses. He
has been here for almost six months, and is just now able to see
again. Here in the U.S., Emmanuel is cleaning rooms at a motel in
East Denver. He is trying to study English, but does not have much
time to practice with good, native speakers. He wants to attend the
college and take classes, but he must first pass his ESL exam. This
is difficult without the opportunity to practice more. So he reads a
lot. And puts clean sheets on 25 beds each morning. And tries to
talk to people on the bus to work, to practice. He will go back to
college, he tells me. It just might take a while. For now, it changes
everything to have new reading glasses (field notes, December
2010).
This study will examine the challenges faced by Denvers refugee
population as individuals attempt to navigate the American health care system.
The focus of the research will be on refugees resettled in Denver, Colorado by a
local volunteer agency (known, herein, as the VOLAG) and their personal
experiences and perceptions.
1


My study participants originate from an incredible diversity of
circumstance from the recent upheaval of middle class life in Iraq to protracted
refugee camp life in Nepal and the Congo. Pierre Bourdieus theory of habitus
will be utilized to illuminate the relevance of a refugees past in determining how
they will experience resettlement. In particular, the health care experiences of
refugees in both past and present life will be explored and compared; the
refugees ability to act as agentive bodies will be discussed in relation to both
habitus and past experience interacting with health systems. Applying the concept
of habitus to refugees navigation of the American health care system emphasizes
the relevance of pre-migration experiences, and suggests the value for its
consideration by resettlement programs.
In addition, this project will explore refugees perceptions of barriers to
accessing health care, and how measures of acquired capital facilitate the
individuals ability to overcome these barriers. Bourdieus various forms of
capital will provide a framework within which to understand the nature of this
struggle. The most critical goal of the U.S. refugee resettlement program is the
facilitation of timely attainment of self-sufficiency for the refugee; this self-
sufficiency is contingent upon the possession of various types of capital, as will
be demonstrated through the experiences of my study participants.
2


The Refugee Resettlement System
According to the United Nations High Commissioner for Refugees
(UNHCR), a refugee is one who:
...owing to a well-foundedfear of being persecutedfor reasons of
race, religion, nationality, membership of a particular social
group, or political opinion, is outside the country of his
nationality, and is unable to or, owing to such fear, is unwilling to
avail himself of the protection of that country (UNHCR 2011).
At the end of 2010, there were 10.55 million refugees forcibly displaced
worldwide, and 276,000 living in the United States (UNHCR 2011:2). In 2010,
the United States admitted approximately 71,400 refugees (UNHCR 2011:2), the
largest quantity, by far, of any other resettlement country (Canada and Australia
were next, accepting 12,100 and 8,500, respectively). The state of Colorado
resettled approximately 2,600 of the refugees resettled to the U.S. (VOLAG 2010)
The process of resettlement begins in the camp to which the refugee has
been relocated from his/her country of origin (likely a close geographic neighbor).
The UNHCR is the governing body in this camp, and the United States delegation
to the UNHCR will interview those seeking resettlement to the U.S. The refugee
must demonstrate proof of fear of persecution and undergo extensive
background checks and numerous interviews. Ultimately, this branch of the
UNHCR will either reject or recommend the refugee for resettlement. In 2010,
3


108,000 refugees were submitted for resettlement consideration (UNHCR
2010:19). The main countries of origin were Myanmar (19,400), Iraq (16,000),
Bhutan (14,800), Somalia (5,400), Congo (4,500), and Eritrea (3,300) (UNHCR
2010).
Refugees in Denver, CO
The [resettlement] program aims to take people whose lives have
been utterly disrupted, whose kin and community networksthose
most elemental of safety nets have been attenuated and ruptured,
whose expectations may never have been to come to America, who
may know no English and have no exposure to an urban, industrial
(or post-industrial) society, and turn them into functioning,
successful Americans. It is hardly surprising that refugees
sometimes do not make that transition in an orderly or particularly
rapid way. (Haines 2006:7-8)
Once assigned official refugee status, a national volunteer agency
(VOLAG) will assume responsibility for the coordination of the resettlement
process. In Denver, there are currently four VOLAGS working to resettle the
nearly 3,000 refugees that annually enter the state of Colorado.
The VOLAG is sponsored by two federal offices which provide the
majority of the funding for the resettlement process; these are the Office of
Refugee Resettlement (ORR) and the Bureau of Population, Refugees and
Migration (PRM).
4


The VOLAGs responsibilities include reception and placement, case
management, housing and employment services, youth programs, pre-
employment training, language training, health coordination, financial assistance,
and outreach and development projects. In 2009, this studys VOLAG of focus
resettled approximately 600 refugees, with an average case lasting for a five-year
service period (VOLAG 2010). As such, funding and resources for all services,
including health coordination and care, are limited.
For the duration of my year of research, I worked as an intern in the health
office of the VOLAG. My responsibilities at the VOLAG included running health
orientations for new refugees, making clinic appointments, driving refugees
to/from appointments, resolving billing/insurance issues, and answering questions
regarding doctor visits, medications, insurance, and payments.
Assessing the health concerns of refugees as well as assisting in their
navigation of U.S. health systems is a complicated and time-demanding process.
For refugee and free clinics, the time-constraints of numerous appointments,
language barriers, logistical support, and clashing cultural-norms in the health
care sector make for an often superficial assessment in which only the most vital
health concerns are prioritized and addressed.
5


Literature and Anthropology
The current literature on health and refugees in the United States focuses
largely on mental health issues (see Henderson 2010; Weine 2001; Boehnlein &
Kinzie 1995; Penderson 2002). Duly, exposure to conflict, violence, suffering,
and the disruption of a former life predisposes many refugees to psychological
trauma, most of which is treated in a new and vastly different society. The
complex nature of treating refugees is documented extensively in the above
literature; Henderson (2010) notes that with their history of displacement,
persecution, fragmentation of cultural and familial structures, and violation of
human rights, displaced persons have a more complicated medical profile than
most other patients in the United States.
Cultural clashes in medical encounters have been explored considerably in
the United States in the decades since the refugee resettlement program began. In
particular, southeast Asian refugees and their different explanatory models and
etiology of disease have been documented. Fadiman (1997), Uba (1992), and
Kleinman (1980) have explored the intricacies of the doctor/patient relationship
and the implications for cross-cultural understanding and communication. These
works reflect much of the influential, early literature in medical anthropology.
Concurrently, the academic realm of refugee studies has emerged over
the last 25 years alongside the discipline of development studies; as such,
6


studying anything refugee has typically been contextualized within a political
and international policy framework. Zetter (1988) has extensively explored the
label refugee and its connotations for the realm of policy, humanitarian
response, and international law. Keller (1975) broke down the refugee experience
into nine explicit stages as a technique for efficient management of forced
migration by international political bodies.
Both of the above sects of research (the former of mental health, culture,
and displacement; the latter of the very political refugee studies) suggest a gap
in the literature. The anthropologist Liisa Malkki has suggested the potential value
of anthropology for contextualizing the circumstance of the refugee; beyond the
implications for policy and development to the condition of the individual. Malkki
(1995) calls for the foregrounding of the causal historical and political processes
of displacement, and a cognizance of the particular situation of each refugee or
group of refugees. The term refugee, according to Malkki, includes within it
a world of different socioeconomic statuses, personal histories, and psychological
or spiritual situations. (1994:496) Considering displacement through an
anthropological lens, utilizing qualitative and ethnographic research methods,
allows the refugee and their experiences to be contextualized, and their stories
used to illuminate the incredible range and depth of experience. To some extent,
anthropology has since embraced the study of refugees (see Ghorashi 2004;
7


Harroll-Bond 1992; Eastmond 2000), but its application specifically to the
acquisition of health care and adaptation to other societal structures is still
lacking. As such, one of the objectives of this paper is to address the challenges
posed to refugees by health care structures in the United States, and utilize an
ethnographic approach to highlight and contextualize the experiences of the
individual.
Methods
Sampling
Identification of primary informants was done through the health
coordination office at the VOLAG. Ideal participants were identified based on
demographic information and my own personal knowledge of the refugees and
their particular situations. Refugees with available time, proficient English skills,
and expressed interest in health and the health system were sought out as key
informants. Specific attention was paid to country of origin, age, and gender in
order to establish a diverse initial sample.
The primary methodology employed in the sampling phase was the
application of Pattons concept of maximum variation sampling. This involved
targeting refugees from various regions of the world, differing socioeconomic
backgrounds, and different demographic features (age, gender, etc.). The logic of
this sampling technique is to identify common patterns that emerge from such
8


variation; themes and experiences that are continuous or shared throughout a
diverse sample are of utmost relevance to the research (Patton 2002). For the
Denver refugee population, identifying participants that represented a wide
spectrum of those resettled in terms of demographic information would allow for
diversity of experience that might illuminate shared concerns.
The sample size for this project was forty refugees. Of this number, fifteen
were identified for in-depth interviews. The remaining thirty-five took part in two
short surveys. The goal was for the informants to be demographically
representative of the refugee population of Denver. The final sample achieved
this, with seven countries of origin represented, an age range of 19-78 years, and a
gender ratio of 17 males to 23 females.
Upon obtaining informed consent for participation in the study, basic
demographic information about participants was obtained through the database at
the VOLAG. Relevant information included region of origin, age, gender, family,
language skills, employment, time in US, and the number of times help was
sought from the Health Office at the VOLAG. This demographic information
provided a framework within which to analyze the experiences of individuals.
9


Triangulation
Drawing from existing research design employing triangulation techniques
in health and health systems research (Jenkins and Howard 1992; Kopinak 1999),
this study utilizes this research methodology because it is an effective research
strategy in its ability to offer multiple perspectives in approaching an issue and to
employ differing methods for evaluating and interpreting data (Kopinak 1999;
Patton 2002). The value of both quantitative and qualitative methods in health
research has been demonstrated (Kopinak 1999) and an approach that considered
both the personal experience and interpretations of the individual as well as the
external factors affecting that individual was deemed most appropriate for the
multi-dimensional study of refugee populations.
In-depth Interviews
The primary source of information for this project was the refugees
themselves, with the majority of qualitative data garnered through in-depth
interviews. These interviews focused primarily on personal experience and
perceptions. Questions were derived using qualitative interview methodologies,
and were mainly descriptive in nature (Gilchrist 1992). The format of the
interview involved open-ended questions that allowed for conversation, dialogue,
10


and in-depth answers that were directed by the interviewee and ran an average of
one hour in length (Gilchrist 1992; Bryman 1988.) The primary goal of these
interviews was to allow the participant to speak openly and at length about their
experiences with health systems, both in their country of origin and in the United
States since resettlement. Additional questions focused on the process by which a
refugee seeks health information and services, and what institutional bodies are
most effectively involved in that process.
The use of ethnographic research methods and, in particular, open-ended
informal interviews has been documented as an effective approach to health
services research (Atkinson 1993; Calnan 1988). Calnan (1988) suggests that
traditional quantitative methods for quality evaluation in health services have
yielded inaccurate perceptions of systems from study participants. Anthropology
and its research methodologies offer a holistic approach that considers the wider
socioeconomic environment and relevant demographic characteristics that may be
relevant in evaluating quality (Atkinson 1993). Interviews were designed to
reflect the potential value of such ethnographic methods.
All interviews were organized through the VOLAG and I conducted them
in person either in the refugees home or in a close, convenient location (coffee
shop, library, etc.) determined by the participant. Table I summarizes
demographic information for in-depth interview participants.
11


Table I: Study Participants for In-depth Interviews
Refugee1 Country of Origin Age Gender Family? Employed? Time in US
Chantal Rwanda 31 F Y Y lyr
Grace Congo 43 F Y N lOmons
Tsenga Congo 46 M Y N 1.5yrs
Mohammad Iraq 39 M Y Y 5mons
Amal Iraq 37 F Y PT 2.5yrs
Leila Iraq 47 F Y PT lyr
Sibah Iraq 32 M Y Y 6mons
Hussein Iraq 41 M Y Y lyr
Bago Burma 27 M Y N 9mons
Aung Burma 31 F Y Y 1.5yrs
Sonam Bhutan 26 M Y Y 7mons
Pema Bhutan 39 F Y Y 2yrs
Mariam Eritria 54 F Y N 8mons
Rachel Congo 19 F Y In school 8mons
Esther Congo 19 F Y School 8mons
Fatimah Sudan 38 F Y Y 6yrs
Survey I
The second method employed for obtaining data was the administration of
a short survey (Survey I). Survey I was kept in the Health Office at the VOLAG,
and was administered to refugees that came through the office. It was also
All names used are pseudonyms.
12


administered to other refugees at the center; many of these were waiting to meet
with case workers, health workers, or doing volunteer service or classes at the
VOLAG.
Survey I asked three basic questions of the participants:
(1) What are the three biggest challenges to you accessing medical
care here in the U.S.?
(2) How long did you wait until your first doctors appointment in
the U.S.?
(3) What would you suggest to improve how the U.S. handles
health care for refugees?
The purpose of Survey I was to obtain a larger quantity of responses that
would provide a greater representation across the refugee populations
demographics. The questions were deliberately short answer so that the data
obtained could be quantitatively analyzed, thus providing a mixed methods
element to data analysis. The results of Survey I are discussed in Chapter 5.
Survey II
I carried out the second survey in my role of health office intern at the
VOLAG; the data comprising this survey was obtained through the VOLAGs
database and discussion with case workers. The information was used with the
13


consent of those who took part in Survey I. Four pieces of information were
obtained:
(1) Is the refugee currently employed?
(2) Was the refugee resettled with family and/or did they have family already
in Denver?
(3) Does the refugee have [at least] basic English skills and the ability to
improve on these skills?
(4) How many times has the refugee contacted the health office for
assistance?
This information was used to determine the relationship between 1/2/3 and 4
above, respectively. Survey II provided another set of data to be analyzed
quantitatively. The results are summarized in Tables II and III (Chapter 5).
Participant Observation
The third type of data used for the study was field notes taken while
working as an intern health coordinator at the VOL AG during the year that I
conducted research. Daily field notes were kept regarding specific experiences,
challenges, and misunderstandings. From driving refugees to clinic appointments
or eyeglass fittings to the hours spent on the telephone with the billing
departments at local hospitals, the Medicaid helpline, or collections agencies, I
14


became thoroughly familiar with the logistical challenges facing this population.
Through this kind of participant observation, I recorded further notations and
reflections about barriers, challenges, and experiences. These observations
provided a more comprehensive understanding of the circumstances and
experiences facing study participants, as well as the knowledge base to recognize
patterns and themes prior to data analysis. They also situate the stories told by
study participants, allowing for a fuller contextualization of the challenges posed
to refugees as they attempt to acquire access to health services.
Approval for this research was obtained from the University of Colorados
Institutional Review Board in March 2011.
15


CHAPTER 2
HEALTH SYSTEMS AND REFUGEES
Patricia came into the health office today with three new health
bills that have gone to collections. I pull the thick, ever-heavy-ing
folder for her baby son, Tsenga, out from my ongoing cases
drawer. There are roughly 28 bills inside, dating back to his
birthday nine months ago. Many of the bills have been re-issued,
and a few have gone on to collections. None of the bills can be
resolved, as all charges should be covered by the babys Medicaid
(baby Tsenga is, in fact, financially responsible for his own birth).
Medicaid, however, has not yet been issued for the baby and,
despite dozens of inquiring phone calls, there is really no way to
tell when this may happen. In the meantime, Patricia continues to
bring me bills. I watch helplessly as the bills from Denver Health
turn into bills from collection agencies. I wonder what sort of
effect this is having on her credit. I wonder how many hours on the
phone with that particular collections agent it will take me to
resolve the bill once we acquire the babys Medicaid. I wonder
how Patricia, who is just beginning to learn English, is expected to
understand any of this, let alone resolve the issue. I force myself to
put Tsengas folder away. There is nothing to do now but watch
the stack of bills continue to grow. (March 2011)
The VOL AG and Agency
Upon arrival in Denver, the new refugee will attend a series of orientation
meetings at the VOLAG. Included in these meetings will be a health orientation.
The primary purpose of the health orientation is twofold: (1) to acquaint the
refugee with the basics of the American health system, and (2) to assess if there
16


are any immediate and pressing health concerns that should be immediately
attended to.
Health orientations last, on average, about 30 minutes. Often, multiple
refugees are being attended to. Sometimes, there is more than one language
spoken and, thus, multiple translators present. The health worker administering
the orientation explains what to expect at a doctors visit, how Medicaid works,
the concept of confidentiality, and other related topics. He/she will ask a series of
questions ranging from the refugees use of medications, to interest in HIV/AIDS
testing, to family planning options. Upon acquiring basic health information from
the refugee, this information is forwarded to Denvers Refugee Clinic, where it is
evaluated by a qualified health professional. Upon this evaluation, the first clinic
appointment will be scheduled. Among study participants, the average amount of
time until that first appointment was one month.
The central goal of the VOLAGs health office is to provide information,
resources, and support for refugees in attempts to facilitate self-sufficiency in the
health sector. Simple methods are employed to do this; for example, when driving
a refugee to a doctors appointment, the health worker may drive along the bus
route, showing appropriate stops and bus numbers. The health office, in its
official capacity, offers the refugee a ride to his/her first clinic appointment; from
there the refugee is required to attend further appointments independently. In
17


reality, the location of a new appointment may be confusing and complex to get
to, in which case the health office will often offer transportation beyond the first
appointment.
Medicaid
Amal, 38, is one of over 60,000 Iraqi refugees living in the United States
in 2010 (UNHCR 2010). Both she and her husband worked for United States-
affiliated organizations in Iraq; their family underwent resettlement after
receiving threats. With both adults possessing advanced degrees, they were eager
to come to the U.S. and begin building a new life for their son and daughter.
Currently, Amal works part-time as a translator, and her husband works a
minimum-wage sales job in a warehouse.
In the United States, you have to wait long, long time for
appointments. It is really difficult, because when you need to see a
doctor, you cannot just go. My son has [a chronic condition] and it
took us months and months to figure out the proper medication
once we were here (different medications were available in Iraq).
We had to wait a very long time to see the doctor for the first time,
even though we had run out of medicine. It was scary and I did not
understand why we couldn 7 just go to the hospital. But our friends
told us, if we went to emergency room, it cost us probably $2000. It
is really difficult because insurance is very confusing, and I do not
understand why I cannot just take my children to hospital. In Iraq,
if something was wrong you go to the hospital and you see doctor.
You don 7 worry about paying for these things, and there is no
understanding insurance. Medicaid is complicated, and even now
18


after two years my husband and I do not really understand (Amal,
April 2011).
One of the most confusing aspects of the American health system,
according to study participants, was gaining a real understanding of Medicaid and
health insurance. Medicaid is provided for refugees for eight months from the day
they arrive in the United States. However, in the state of Colorado, issue of the
official Medicaid card can take up to two months. In the interim, many refugees
incur large medical bills. These are technically obsolete, as the refugee is
officially covered by Medicaid; still, receiving numerous bills a week for large
sums of money is intimidating and confusing. Each day, worried refugees bring
these bills into the health office, where health coordinators make long, arduous
phone calls to have the bills annulled.
Like the ongoing medical bills for Patricia and her son, Tsega, on
average I had approximately thirty on-going cases at a given time in the health
office. Of these, approximately half were classified as waiting for Medicaid.
The other half would be backdate Medicaid. Often, Medicaid is not issued for
the exact date of arrival, and the refugee has seen a physician prior to acquiring
his/her insurance. In these cases, Medicaid needs to be backdated to cover any
expenses incurred.
19


During our interview, I explained this process to Amal. I explained how I
spend an average of two hours a day at the VOLAG on hold on the telephone,
attempting to explain and correct these situations. She shook her head in disbelief
and articulated the concern I have each time I find myself in this particular
circumstance:
How is it that we could do this ourselves? I want to be independent
and not to be always needing the VOLAG. I speak English and I
have a good education. Iam motivated and a, um, people person?
But I cannot call these numbers and explain my insurance. I cannot
understand all of these problems and I do not have time to be
holding on telephone for one hour! How can you expect the refugees
to do this themselves? How can we be independent when this system
is so impossible for us to understand or to act in?
Moving Towards Agency
For many of the refugees that I interviewed, self-sufficiency remains an
elusive and far-off objective. The health sector poses considerable obstacles, and
the ability to successfully navigate the American health system remains seemingly
unattainable for many of my study participants.
The structural nature of the health system appointments, referrals,
specialists, co-payments, insurance forms, Medicaid, confidentially, etc. exists
in stark contrast to the health systems in most (if not all) countries of origin of
U.S. refugees. Shi and Singh (2008) describe this complexity, stating that:
20


U.S. health care does not consist of a network of interrelated
components designed to work together coherently, which one
would expect to find in a veritable system. To the contrary, it is a
kaleidoscope of financing, insurance, delivery, and payment
mechanisms that remain unstandardized and loosely coordinated.
(2008:4)
Understanding when or why one is being sent to a different doctor can be
terribly confusing to an individual unfamiliar with the specializing nature of the
U.S. health system. Additional stress to the refugee is incurred because of the
logistical implications of multiple doctors; more bus routes to learn, phone calls to
make (in ones second language), papers to bring (referrals, charts, etc.). These
seemingly mundane details of health care cause a tremendous amount of
confusion for many refugees, and ultimately cause them to depend on the health
office of the VOLAG for a significant period of time after resettlement.
Long (2001:49) describes agency as .. .implying both a certain
knowledgeability, whereby experiences and desires are reflexively interpreted and
internalized (consciously or otherwise), and the capability to command relevant
skills, access to material and non-material resources and engage in particular
organizing practices. Thus, agency suggests ones ability to gain knowledge
and/or skills, and to translate this acquisition into action. For a refugee, this may
translate to language skills and the exponential increase in opportunities that arise
with improving command of the English language.
21


While the VOLAG and, specifically, the health office of the VOLAG,
prioritizes education and support for this learning process, it is often most
efficacious to make appointments, get referrals faxed, or provide transportation
for the refugee. As such, facilitation of the refugees agency within the health care
system is a slow and often challenging process.
Health, Habitus, and Adaptation
The process of adaptation to life in the United States the coping
mechanisms and strategies employed by the refugee can be better understood
through application of Pierre Bourdieus concepts of habitus, capital, and social
field (Bourdieu 1986). These principles are useful in illuminating the nature of
struggle as the individual vies for and gains access to health care.
The conceptualization of health as a social field urges one to consider the
relational and multidimensional aspects of health and health care, and emphasizes
the structural nature of the health system. Power and resources and access to
these determine the individuals social positioning in the field of health. These
social positions are heavily influenced both by ones habitus, as well as ones
access to capital, and are manipulated as the agent struggles to gain and embody
22


various forms of such capital.2 Further, power is utilized both by the actor in
his/her ability to make decisions and maneuver intentionally within the social
field, and in the institutional constraints on that decision-making. Power both
enables and constrains (Pappas 1990).
According to Bourdieu (1980), habitus refers to the ...generative and
unifying principle which retranslates the intrinsic and relational characteristics of
a position into a unitary lifestyle. Habitus refers to social norms, conditioned
through ones surroundings, society, and culture, that guide behavior and thought.
Ones habitus is determined by exposure to social conditions and experience, and
is described by Bourdieu as both structured and structuring (Wacquant 2006). The
habitus of the refugee is determined by their previous life with its learned
behaviors, circumstance, culture, social norms, and structures. The efficacy of the
refugees adaptation and in particular, his/her ability to access adequate health
care- can be observed in relation to this habitus. While the habitus of most
refugees does not necessarily contribute to inequalities in health care access, it
may contribute to the reproduction of such inequity. A refugees social norms and
consequent actions may reflect more of past experience than present situation.
Upon investigation, this illuminates the socially stratified nature of health care
Capital will be discussed further in Chapter 4.
23


access and further emphasizes the inadequacy of the health system for serving
refugee populations.
Amal and Fatimah, from Iraq and Sudan respectively, held positions of
professional authority in their countries of origin. Both possess advanced degrees
and enjoyed financial and career success in their home countries. They owned
cars and sent their children to private schools. They possessed a level of
independence, of personal drive in their careers, and enjoyed the privileges of
upper-middle class life. These women have enjoyed [relatively] successful
resettlement experiences as well.3 Fatimah, formerly a dentist in Sudan, has
worked successfully for the past three years to save enough money to take her
dental hygienist exams. Amal, while working only part time as a translator, has
(with her husband) saved enough money to own a car and move away from the
low-income housing typical of refugees in Denver. Fatimah offers her opinion on
the subject:
Its an idea I call what we come with. Where we come from, our
life before... it affects us here. How we adapt, how we live, how we
learn to be American. The what we come with determines it all
and it is the best place for the VOLAG to start. For me, adaptation
I use and emphasize the term relative to describe the ease of resettlement for these particular
refugees. While, from the VOLAGs standpoint, these particular cases are often less logistically
challenging, the adjustment for these refugees can be as, if not more, difficult because of the stark
contrast (and often downgrade) in lifestyle and opportunity.
24


was hard because I knew I was not a doctor anymore, but I was
independent and smart, and I had my family. I spoke English. I
came with the right skills. To make a good life here. A good life.
In contrast, many refugees come from protracted stays in refugee camps.
Among my study participants, Emmanuel, Pema and Mariam all lived for at least
ten years in refugee camps (in Tanzania, Nepal, and Ethiopia, respectively).
Rachel and Esther grew up in camps in Zambia. The originating habitus of former
lives (in their countries of origin) have already been significantly altered by the
structures and routine of life in refugee camps. For Rachel and Esther, the camp is
all they have ever known, and has, thus, formed their habitus.
Refugees from protracted camp situations described the unpredictable
nature of life in camps. Each reiterated the unreliability of health care and other
services.
Sometimes there is a doctor, sometimes not. Sometimes there is the right
medicine, sometimes not. Sometimes a health worker can organize a trip
to an [outside, often urban] hospital, sometimes that is impossible
because you cannot legally leave the camp. You cannot depend on the
system, but at the same time, you are dependent on it. (Emmanuel,
Congo)
Many camp-originating refugees have spent over a decade unable to exercise
agency in order to seek medical care. The only systems they have experience
navigating are those of the camps, which are depicted by the refugees as adequate
and simple, but extremely unreliable. When these refugees undergo resettlement
25


and are immediately thrust into a situation demanding self-sufficiency and
independence, the effects of such habitus quickly become clear.4
4
It is worth noting that, while refugees originating in protracted camp placements face clear
challenges upon resettlement, they also tend to have the most positive perception of the American
health system and its benefits. This comparative approach will be further developed in Chapter 4.
26


CHAPTER 3
HEALTH AND CAPITAL
Mustafa, 78, has been resettled alone from Eritrea. He has
no English skills, has a long and complicated list of health
problems, and as a result of the prior two, cannot work. Today I
bring flowers and colorful blankets to his drab, one room
apartment to help him decorate. Together we go to the grocery
store, and a small convenience store that sells Injera (Eritrean
bread), where he attempts to bargain with the cashier. The cashier
laughs wildly, yelling at Mustafa in Tigrinya. Mustafa pats my
head, and speaks to me for the entire car ride home. I understand
nothing, but his head pats continue, and so I assume that I am
doing something right.
In the months following his arrival, Mustafa will be in and
out of the hospital six times. He will be completely dependent on
government programs for financial support, will be unable to even
consider working due to his health and lack of English skills, and
will spend his time almost entirely alone. While he does make
friends in Denver (Mustafa is incredibly charismatic; a charm
perceptible despite my lack of linguistic understanding), he lives
quite far from the other Eritrian and Ethiopian families because of
his health concerns.
In one of our few translated conversations, I ask him what
he needs- if he is eating- where his social security checks are. I ask
him if he understands and is taking his medications properly.
Mustafa responds that he loves me, and that he misses his
family. He does not want to talk about anything else.
(field notes, February 2011)
Mustafa possesses virtually zero capital and no agentive framework within
which to act to gain access to it. He has no English skills, poor health, no job, and
no social support system. His resettlement exemplifies an incredible flaw in the
U.S. resettlement process, as working towards self-sufficiency is essentially
27


impossible. As such, he is dependent on both the VOLAG and government social
welfare programs to survive.
Self-sufficiency in navigating the field of health, and eventual gains in
access to capital that promotes such self-sufficiency, is a primary goal of the
VOLAG. As such, considerable investment is made to improve refugees access
to capital. This emphasizes the dynamic nature of health as a social field; with
access to employment services at the VOLAG, for example, the refugee can
increase his/her economic capital, making it suddenly feasible to make co-
payments or pay for medications.
Forms of Capital
Bourdieus notion of relational capital was influenced by aspects of
Marxs economic theory; namely, that economy is more heavily dependent on
relations between people than on resources per se (Marx 1976). Bourdieu
augmented Marxs economic idea of capital to include both social and cultural
capital as additional critical resources. While Bourdieus actual theories were
developed in relation to traditional class distinction, his theoretical framework is
relevant in a globalizing, transcultural world. In this study, the concept of capital
28


is most relevant in illuminating structural barriers and power relations faced by
my participants.
In the VOLAGs health office, I watched refugees navigate the social field
of health over the course of a year. Individuals who once needed assistance to call
for an appointment would eventually acquire the knowledge and skills to do so
themselves. As English skills improved, riding the bus became less intimidating
and confusing. With the support of family members, children stopped missing
appointments. In contrast, older refugees who were unable to learn any English
continued to understand very little about the health care system and typically
required assistance for most medical situations. From these observations, it
became clear that capital for the refugees embodied three dominant forms, which
echoed Bourdieus theory: language skills (Bourdieus cultural capital),
employment status (economic capital), and family (social capital). With
improvement in any of these forms came progression towards self-sufficiency.
As such, I developed a survey to demonstrate this pattern. From thirty
participants, the status of each form of capital was established. This information
was obtained from the VOLAGs database (family), as well as discussion with
case workers (English skills, employment). These were then compared with the
number of times the refugee had contacted the health office for assistance
(information also recorded in the VOLAGs database). The survey (Survey II)
29


reinforced my hypothesis that capital would be positively correlated with self-
sufficiency in the social field of health. Of the study participants, 100% of those
with access to all three forms of capital had contacted the health office less than
three times in the past year. Of those with access to two of the three forms of
capital, 85% had contacted the health office three to seven times (the other 15%
more than seven), and of those with access to only one form of capital, 90% had
contacted the office more than seven times. As surmised, with an increase in
access to capital came a decreased dependence on the health office of the
VOLAG. The information gathered in Survey II is displayed in Table II, and the
results summarized in Table III.
Table II: Survey II
Gender Age English Family Employ- ment Country of Origin Health Office Contact #
1 F 31 Y Y Y Rwanda 1
2 F 43 Y Y N Congo 3
3 M 46 Y Y N Congo 1
4 M 39 Y Y Y Iraq 2
5 F 37 Y Y Pt Iraq 1
6 F 47 Y Y Pt Iraq 1
7 M 32 Y Y Y Iraq 1
8 M 41 Y Y Y Iraq 1
9 M 27 Y Y N Burma 3
10 F 31 Y Y Y Burma 2
11 M 26 Y Y Y Bhutan 2
30


12 F 39 Y Y Y Bhutan 2
13 F 54 Y Y N Eritrea 4
14 F 19 Y Y School Congo 1
15 F 19 Y Y School Congo 1
16 F 38 Y N Y Sudan 1
17 M 22 Y N N Bhutan 9
18 F 26 Y Y N Iraq 7
19 M 27 N Y N Bhutan 6
20 M 29 Y Y N Congo 4
21 M 42 Y Y N Congo 5
22 F 41 Y N Y Iraq 3
23 F 48 N Y Y Eritrea 3
24 M 41 Y N Y Iraq 5
25 F 40 Y N Y Somalia 6
26 F 32 Y Y N Somalia 5
27 M 61 N Y Y Iraq 4
28 F 60 N Y N Iraq 6
29 M 78 N N N Eritrea 10
30 F 46 N Y N Bhutan 8
31 F 21 Y Y N Congo 6
32 M 20 Y Y N Congo 5
33 F 31 Y Y N Somalia 3
34 F 39 N Y N Bhutan 9
35 M 54 N Y Y Bhutan 5
36 F 54 N Y N Congo 9
37 F 53 N Y N Somalia 10
38 F 59 N Y Y Iraq 5
39 M 32 Y N N Iraq 8
40 M 31 Y N N Iraq 8
MZF Mean: % with % with % Number of Mean:
ratio: 39 basic family currently countries 4.4
17/23 Range: 19-78 English skills: 73% (29/40) support: 80% (32/40) employed: 43% (17/40) represented: 7 Range: 1-10
31


Table III: Summary of Survey II Findings
Gender MZF: 17/23
Age Mean: 39 years, Range: 19-78
Country of Origin Number of countries: 7
Language Skills Y/N: 29/11 Percentage w/ basic skills: 73%
Family Y/N: 32/8 Percentage w/ family: 80%
Employment Y/N: 17/23 Percentage employed: 43%
The vast majority of refugees resettled to the U.S. come with family
members or join family members already in the U.S. Language skills vary
dramatically and the VOLAG provides English classes for all those resettled. It is
expected, by both the VOLAG and the sponsoring government agencies, that
refugees will learn English. Pema, one of my Bhutanese study participants,
however, estimated that about 20% of current Bhutanese refugees can actually
speak English. She explained to me that:
...most of the older generation, they cannot. They need their children
to translate for them. They just cannot learn English, it is too difficult.
That makes things very hard, certainly. They cannot make a doctors
appointment, or even go to the grocery store. They are very
dependent on their family.
32


Transcultural Capital
Another important form of capital that emerges from my field notes and
emphasizes an effective strategy in the resettlement process is transcultural
capital. Meinhof (2006) defines this as the strategic use of knowledge, skills, and
networks acquired by migrants through connections with their country and
cultures of origin which are made active at their new places of residence.
The VOLAG employs an effective translation of this idea of transcultural
capital: the employment of refugees in positions at the VOLAG. Caseworkers,
administrative assistants, and the current financial director are all resettled
refugees. While there are obvious logistical advantages, i.e. language skills, to
hiring refugees, there are other considerable benefits to both the employed refugee
as well as those that he or she serves.
When Pema and her family were resettled from a refugee camp in Nepal
(they originated in Bhutan), the familys case worker was a former Nepali
refugee. For Pema, who was resettled with both her aging parents and teenage
children, the visibility of her case workers success was encouraging in the face of
a daunting situation. The case worker also understood the cultural norms and
practices typical of a traditional Bhutanese household and was able to
communicate with even the elderly refugees. This offered considerable comfort to
the family as they underwent the initial challenges of resettlement, and they came
33


to trust and respect their case worker. In addition, with an intimate understanding
of the refugee familys situation, the case worker was able to effectively and
efficiently move them through the initial stages of resettlement. From the
perspective of the VOLAG, this is an incredibly effective use of a refugees skill
set; a skill set that exists only in the unique cross-cultural space of resettled
refugee.
According to Pema:
We trusted the CW, and we knew she understood what we were
going through. Looking back, I know that she could predict what
would be most challenging for us. In particular, for my older
parents. Now, when I help others in the neighborhood, I can guess
which things are most difficult -1 can explain the difficult bus
routes, or how to fill a prescription before there is a problem.
Our caseworker understood both worlds, and now I think I can
too. I want people in my community to come to me for help and to
know they can trust me, the same way we respected our case
worker.
34


CHAPTER 4
COMPARATIVE HEALTH SYSTEMS
My life in Iraq, it was good. Both my husband and myself, we
were very successful and could give my children the things
they wanted. When the war came, we made adjustments. But it
was still okay. We worked with many Americans, and we
workedfor a better Iraq. When we were threatened, we knew
we had to leave. The U.S. had told us they would give us a
good life in America. There were words like freedom and
safety and opportunity. I remember those, and thinking it was
what was best for my children. If it was just me, maybe I
would have stayed. But when you have children, you must go.
I didn 7 think about not being able to get a job. I didn 7 think
about my children not having medical care. (Amal, 38, Iraq)
As discussed in Chapter 2, one of the greatest contributing factors to a
refugees perception of the US. health system was comparison to the health
system in the individuals country of origin. Further, a distinct voice is heard from
those whose lives had been recently disrupted in comparison to those originating
in protracted camp situations. My interactions with many of the Iraqi refugees
was particularly poignant in illuminating this reality.
Compared to Iraq, I am very, very scared about the medical system
here. If I need to go to the doctor, or one of my children needs to
go, I know that I have to wait. That is so terrifying, as a mother. If I
go to the emergency room, I will wait. Then I will also have to pay
most of the bill. It is terrible compared to Iraq. There, medical
service was very good; if you are sick, you go to the doctor. You do
not wait, you do not pay. Even if you are poor, or uneducated, the
system is very simple to use. Here, well my husband has a doctor
degree, and I have a master degree. We are educated and
35


motivated. But when we could not get jobs, we did not have
insurance. This is so difficult, as a mother, to try to understand if
the government will help us. Sometimes there are programs,
sometimes there are not. I have to come to the VOLAG and hope. I
hope a lot. I had a good, stable life in Iraq. If I did not have
children, I would go back. (Amal)
In contrast to Amal are Rachel and Esther, 19-year old friends resettled
from the Congo. The girls grew up in a refugee camp in Zambia, where they
learned to speak English and use the internet to communicate with friends and
family who had undergone resettlement. Each time I see the girls, we talk about
school (they are working towards their GEDs in order to begin attending the local
community college) and whether or not they will finally agree to have their
wisdom teeth removed. Each of these conversations is interrupted multiple times
by text messages and cell phone calls. They are both adapting quite well to their
new lives in Colorado.
The hospitals are very good here, I think. In the camp, seeing the
doctor, it could be very difficult. Most of the time, I just do not go to
the doctor. It is okay, because I was healthy when I was young and
so was my family. But when we tried to go, we waited so long and
sometimes the doctor is not even there. Even after you wait. In the
United States, the hospital, it is very clean, very nice. The doctors
are excellent. I feel very good that I can go to the doctor if I am
sick. (Rachel, 19, Congo)
It makes us feel better, knowing that health is not a worry. I think
the United States is a very good place, and I think if I was sick, I
would be very happy to have these doctors. I know that I would be
taken care of. (Esther, 19, Congo)
36


Reconciling these extremely different perceptions of health care in the
U.S. is quite challenging. For the VOLAG, extending the same services and
opportunities to all refugees is standard practice. However, consideration of what
we come with appears to be important in determining the appropriate provision
of services. Studies documenting employment trends in refugee populations
compiled by the Office of Refugee Resettlement echo this relational
conceptualization:
Refugee resettlement thus aims at an enormous social
transportation about which even the most rudimentary measure of
progress (employment) indicates more about the starting point of
the process and the conditions under which it occurs than about
progress per se. (Haines 2006:12)
Adjusting the system of resettlement on a case by case basis is, of course,
an incredibly significant challenge to the VOLAG and all involved in
resettlement. How can organizations deliver consistent services and programs to
individuals whose origins are all unique? This concern underlines the challenge of
refugee resettlement as a broad, uniform process and encourages those in the
system to evaluate measures that could more effectively accommodate the large
disparities and diversity within the population.
37


Liminality, Refugee Camps, and What We Come With
Refugee camps .mark physically and symbolically the transition of
human beings between societies. (Mortland 1987)
My study participants were often hesitant to discuss their experiences in
the refugee camps. Most were hard-working and motivated in their camp lives,
learning English and technical skills. All directly mentioned the services lacking,
and how their families adapted to whatever resources were unavailable. In many
cases, this was in relation to health care. Camps in Zambia, Tanzania, and
Nepalwere regularly described as barely adequate and just acceptable. In
each of these situations, my study participants spoke of a lack of choice, a lack of
independence, and a lack of options. Each, in effect, alluded to the utter lack of
agency they possessed during their time in refugee camps. Victor Turners (1969)
theory of liminality describes a state where an entity is neither here nor there;
they are betwixt and between the positions assigned and arrayed by law, custom,
convention, and ceremonial.
For a considerable number of refugees resettled to the United States, they
have existed in this in between state for significant periods of time. Over half of
my study participants had spent more than ten years living in camps. This
extended period of liminality has lasting effects on the behaviors and social skills
of the refugee. Malkki explores this liminality as it pertains to identity, culture,
38


and statehood in refugees. She challenges the categorical system that is so often
associated with displaced persons, commenting that refuges in camps are ordered
and managed; they are considered meaningful primarily as...an object of
intervention. (Malkii 1992:34) Malkkii explores the refugees use of identity and
liminality as an expression of personal agency. Her study participants alternately
clung to the categorical label of refugee as a means of remaining apart from a
new society and tied to the past, and dismissed it as a means of integration with
local culture. She explores the use of this liminal space as refugees strive to
establish identity and stability in a new geographic space, and how this affects
access to capital. This analysis provides a useful framework for evaluating the
manner in which my own study participants relate to their social standing and
status as refugee while attempting to navigate a new and complex set of societal
structures. It also emphasizes the diversity of background from which refugees
arrive in the United States. Malkki (1995) comments on governmentality in
refugee camps, referring to the international refugee regime which includes
international organizations, governments, and private institutions, and their
management of mass displacement. Camp-originating refugees have long been
the object of intervention, powerless and dependent on the institutional forces and
bureaucracies controlling the process of resettlement.
39


Upon resettlement to the U.S., refugees are thrust into a sort of full-
immersion program by their respective VOLAG, and are subsequently deemed
self-sufficient. Refugees, expected to become functioning and contributing
members of U.S. society in a timely manner, are immediately inundated with
orientations describing employment, language, health, and social welfare
programs. Overwhelmed, many fail to adapt. Some, like Mustafa, will remain in a
liminal existence for the remainder of their lives. Brought to the United States for
a new, better, and safe life, he instead remains on the outskirts of a foreign
society, entirely dependent on that society its VOLAG and its funding one
that could not exist in greater contrast to his former life, nearly fifteen years ago
in Eritrea.
Other participants spoke of older refugees and the particular challenges of
resettlement for them. Pema spoke at length of her elderly parents, and their
inability to adjust to even the simplest aspects of American life. A few Bhutanese
traditions were still performed in their household, she told me, adding:
Really, though, we are so far from Bhutan. We were in camps in
Nepal for many, many years. My parents, they have many
memories. But some have changed over time. So much is not even
Bhutan. So where are they from? What are they remembering?
From life in Bhutan, or life in Nepal? And do they realize they are
building a new life, once again, here in America? I cannot really
imagine. Sometimes, it is very frustrating. But I cannot imagine for
elderly refugees who do not have young family. How can they
40


come here and really become American? Because, I think it is too
difficult, if you are older. This is very sadfor me to think about.
What can certainly be gleaned from my participants stories is that the
capital necessary to emerge from this liminal space was of utmost importance to
the resettlement process. As refugees gained access to capital, they transitioned
from this liminal state toward immersion in U.S. society. The ability to access this
capital, however, ranged widely depending on the refugee and his/her particular
circumstance, life history, and experiences. While the VOLAG certainly makes
definitive efforts to maximize access to this capital, the resettlement system as a
whole does not differentiate between refugees based on their origin. Extending
distinct services to refugees categorized as challenging for immersion such as
the monolingual, the elderly, or those originating in protracted camp situations -
could reduce the number of individuals who, upon resettlement, continue to exist
in the in-between of past and future. Identifying specific barriers to accessing
services, and determining methods to mitigate these challenges for
groups/individuals is critical.
41


CHAPTER 5
BARRIERS TO ACCESS
Survey I asked the participant to identify the three greatest challenges to
accessing health care. Of the thirty participants surveyed, 100% identified
language, 85% identified transportation, and 85% identified economic concerns as
the greatest barrier to health care. Other factors were logistical in nature (i.e., 50%
noted Medicaid and 50% said making appointments). Table IV summarizes the
findings of Survey I.
Table IV. Barriers to Accessing Care
Number of Respondents
Barriers
Language 40
Transportation 34
Economics 34
Other 10
Total: 118 (40 participants naming three barriers each)
42


Language
Every refugee I interviewed discussed language as a significant
impediment to seeking health care. Even for refugees with strong English skills,
many of whom were working as translators at the time of this research, navigating
the health system in their second language posed serious challenges. Medical
jargon is both confusing and frustrating. My participants cited an extensive
vocabulary that must be learned and understood in order to independently seek
care: referral, confidentiality, primary care physician, Medicaid, copayment.
These English terms, as well as the associated action of the patient, require both
linguistic skills and the ability to ask questions and converse in English.
Any hospital or clinic that accepts Medicaid is also required, by law, to
provide translation services (CMS 2011). This is, ideally, an individual translator
or, more often, a language line which provides translation over the telephone. My
study participants cited the language line as confusing and often entirely
ineffective. Pema, for example, discussed the challenge this posed for her mother
when attending a clinic visit without translation. Without Pemas explanation of
the process, her mother was unable to grasp the idea that there was someone
43


speaking Nepali on the other end of the telephone, and the translation was, thus,
entirely ineffective.
Further, language was discussed by my participants as a barrier to even
attempting to seek care.
How can my mother even try to go herself? She certainly cannot
understand anything over the phone. Even if she just called a
number and said Nepali over and over again, as she had been
told to do. This has not worked. And how can she go to an
appointment at the hospital? She cannot read signs, she does not
know how to ask for directions. It is terrifying for refugees to not
be able to communicate. To ask for help. (Pema, 39, Bhutan)
Language barriers pose a serious challenge for a significant percentage of
the United States population. Flores, in a 2006 study of language barriers to
medical care in the United States, estimated that almost 50 million individuals
were not proficient in English. The study found that in 46% of emergency room
cases where English proficiency was limited, translation services were not
performed (Flores 2006). Further, only 23% of teaching hospitals even offer
physician training for the medical use of interpreters (Flores 2003). There are
currently no laws in the United States that require any data collection or inquiry
into the patients English proficiency or primary language. The only federal
mandates that exist are the above mentioned interpretation service requirement for
hospitals that accept Medicaid.
44


Language barriers pose further logistical challenges for the refugees I
worked with in Denver. On more than one occasion, I accompanied a refugee to
an appointment only to be informed that no translator was available, despite the
law. Another time, a female refugee and I arrived at a mammography clinic and
were met by a male translator. Extensive apologies were issued on both
occasions, and the appointments were rescheduled. This, however, required
another day of unpaid leave from work for the patients, as well as additional
logistical support of a VOLAG worker.
Economy
Mariam has been in the United States for nine months. She was resettled
from Eritrea with her two daughters, aged 19 and 21. When they were selected for
resettlement, they left behind Mariams husband and two sons, age 25 and 28.
Since coming to the U.S., Mariam has been diagnosed with a chronic health
condition which requires her to take multiple medications each day. Medicaid
covered the cost of these medications for the first eight months in the U.S., but
now her Medicaid benefits are expiring. Her condition keeps her from working
full time. Her older daughter works at a local convenience store, but the younger
daughter has been ill since resettlement and cannot work. Thus, the 21 year old
daughter, in her minimum-wage job, is the sole provider for this family of three.
45


When I interview Mariam, she expresses fear, sadness, and regret for coming to
the U.S. without her husband and sons. She is particularly upset on this day and
tells me that she sees no solution. She needs help, and there is simply no one to
give her help anymore. The VOLAG cannot help for any longer; it is time for the
women to be independent. But given their health concerns, their employment
options are incredibly limited. Mariam tells me that she wishes she was still in the
camps in Eritrea, and that she expects to die from her condition.
Studies of health care access among immigrants to the United States echo
the economic concerns of my study participants, and underline the complex nature
of the U.S. health care system for the displaced. Leclere et al (1994), Ku (2001),
and Flores (1998) document lack of insurance, Medicaid, and financial insecurity
as the most significant factors in the under-utilization of medical services amongst
immigrants in the United States.
Mariam voices her fears in the face of such economic insecurity:
I don 7 know how we can even afford to live; to eat, to pay for the
rent, to pay for medicines. If my husband and sons were here,
maybe we would be successful. We could have enough money. But
now, we are a sick home. Myself and my daughter. And I think that
maybe there are programs for us? To help us? I think that we
could still get help. But I don 7 know how. I don 7 know where to
go, who to ask for help. I mostly wish I was still in Eritrea. At least
then we have enough money to live on. To take care of ourselves. I
don 7 know how I am supposed to pay for anything here.
46


Transportation
Today I attended a focus group at the VOLAG, where a number of
refugees talked about challenges and the resettlement process.
Most discussed the typical problems that we encounter in the
health office each week. One woman, however, told a detailed
story of her first hospital appointment. She, her infant child, and
young daughter did not know how to get home from the hospital,
and so walkedfour hours back to their apartment. She had no
phone, no phone numbers, no idea how to use the bus, and no idea
how to ask for directions. So they just started walking. The health
director and I stared at each other, horrified. No matter how much
you do, you always miss something, (field notes, December 2010)
The majority of my study participants commented on the confusion of the
Denver public transportation system as a definite barrier to accessing health care.
Upon resettlement, a refugee is provided with monthly bus tokens for the period
of service at the VOLAG. Beyond this, the refugee is responsible for learning bus
routes and stops for themselves; a process study participants described as
confusing, intimidating, and even terrifying. The time constraints of bus schedules
pose challenges for work, as one cannot simply schedule an appointment during
lunch break. Older refugees may have a difficult time walking from bus stops to
the hospital. Multiple small children can complicate travel logistics. Ultimately,
the ability to effectively use public transportation is tied to both above-mentioned
barriers. With increased language skills, asking directions or understanding stops
47


and routes becomes less challenging. With increased income, a refugee can ride
the bus more frequently, gaining confidence and knowledge of the city. All three
identified barriers are closely tied to capital, and to the greater agency possessed
by the individual with increasing access to such capital.
48


CHAPTER 6
CONCLUSIONS
After a year working in the health office of the VOLAG, I had certainly
experienced many of the challenges faced by refugees as they seek to navigate the
American health care system. While I was able to draw from my field notes and
personal experiences, I found that the stories told to me by individuals both
illuminated and elaborated on many of my own observations. My study
participants, through their willingness to tell long, personal stories of their lives -
from homeland to camps to resettlement shed light on the shortcomings and
errors of the system whose very goal is to help them adjust to American life.
Fatimahs concept of what we came with is a striking example of a
refugees take on resettlement. The idea that past experience hugely determines an
individuals predisposition to the resettlement process- understanding how they
will cope, what will be hard, what will be easy, what will take longer- is critical in
evaluating how to serve this population. Providing the most effective services to
meet the needs of each individual refugee is essential. While a primary goal of the
49


VOLAG is to encourage an individuals agency, it is also necessary to
acknowledge the particular characteristics of the health care system in the United
States that pose barriers, and make appropriate efforts to acquaint refugees with
this system in an effective manner. The health office of the VOLAG does this
well, as each of my study participants eagerly expressed.
My research revealed a strong relationship between access to capital and
the refugees ability to act independently. Using Bourdeius theoretical
framework of capital and social field, the relational nature of the field of health is
observed as refugees vie for access to capital that will increase their ability to use
the health system effectively. Refugees with access to the most important forms
of capital (employment, family/social network, and English skills) displayed
significantly greater agency in their ability to make appointments, get to the
clinic, and utilize health insurance. With decreased access to capital, this agency
visibly declined. While facilitating access to these forms of capital is a primary
goal of the VOLAG, its relevance to the health sector cannot be overstated. A
number of my study participants were unemployed after almost a year in the U.S.
This appears to be a failure of multiple actors in the resettlement structure; this
failure influences all aspects of the refugees adaptation process, including health.
Access to capital is also relevant for the resettlement program at the
national level. Mustafas case highlights the danger of resettling an individual
50


incapable of making the transition to American life. His [likely] permanent
dependence on the American welfare system, as well as his inevitable persistence
in the liminal space between his past life and U.S. society certainly illuminates a
tragic flaw in the system.
By exploring the relationship between the agency of the individual and the
structures of the health system, the agency/structure dichotomy appears inaccurate
in assessing refugees access to health and health care. Traditionally, emphasis on
structure has neglected the role of agency, and vice versa (see Pappas 1990;
Kleinman 1980; Waitzkin 1984). Instead, a complex social field, in which the
agency of the individual is grounded in the interaction with other refugees, the
VOLAG, hospitals, doctors, and various welfare programs emerges from the
research. Within this field, the dynamic relationship between the refugee/patient
and the health care structures becomes apparent. The refugee maneuvers within
this field in order to gain capital and power; this in turn increases that individuals
ability to understand and utilize the relevant institutional structures. This
maneuvering reinforces the nature of the system; namely, the requirement of
monetary capital, communication skills, basic medical knowledge, and
comprehensive financial/insurance knowledge in order to utilize that system. The
action of the individual can, at times, support that system while, at others,
challenge or transform it.
51


The social field further demonstrates how interminably tied to power
health and health care is. With good health comes the ability to work, to support
oneself and ones family, and to be a productive member of U.S. society. This
belies the cyclical nature of the relationship. One simultaneously requires capital
to access the health care system (and, subsequently, good health) and good health
to be a productive actor that is able to acquire the necessary capital. Cognizance
of this cycle and the entwined nature of health and capital is critical in order to
define effective strategies that improve refugees access to both.
My study participants were clear and concise in describing the most
challenging barriers one must overcome to access heath care. Transportation,
language barriers, and economics (be it unemployment or the inability to
understand Medicaid/health insurance) were clearly voiced as tremendous
obstacles to independence in the health sector. Both transportation and language
barriers are issues which the VOLAG could certainly address more closely.
Unfortunately, the economic barriers addressed by study participants points to a
much greater and more pervasive problem in the United States; namely, the
existence of huge disparities in access to health care based on socioeconomic
status. Further, the rapidly changing state of the United States economy has
rendered resettlement programs extremely vulnerable.
52


Finally, my relationships with my study participants have contributed
greatly to the nature of my research, its trajectory, goals, and results. In
considering these relationships, my own work with the VOLAG, and my own
perceptions and values, it is obvious that removing myself from the research
would lead to an inaccurate portrayal of the processes of this study. According to
Michael Burawoy (2003), interrogating one's relation to the world one studies is
not an obstacle but a necessary condition for understanding and explanation."
Through this reflexive ethnography, I acknowledge that my work as health
coordinator came with its own motivations and also established a particular power
dynamic between myself and my study participants. However, the refugees in my
study regularly interacted with Americans working within the resettlement
system, and their eagerness to participate in this study demonstrates a real desire
to have their voices heard. I reported my analysis of the interviews to my study
participants, and all enthusiastically supported my conclusions. Furthermore,
working within the refugee resettlement system allowed me a deeper,
experientially based understanding of its structure. The long hours spent on hold
with the Medicaid hotline or attempting to work the language lines at a hospital
provided a personal experience of the challenges my participants described. My
work as health coordinator was deeply entwined in my research. I acknowledge
53


both the possible implications for objectivity, and the additional insight it
provided into Colorados refugee resettlement system.
Recommendations
This research illuminates some of the major challenges faced by refugees
upon resettlement to the United States; it also coincides with much of the
literature on resettlement programs and, specifically, on health care for refugee
populations. For me, the interviews also highlight refugees desire to empower
themselves. Fatimah, Pema, and Amal have all worked hard since coming to the
U.S. and have established lives for themselves and their families while giving
back to the refugee community. All three women specifically mentioned the need
for community leaders, and for this type of leadership to be encouraged by the
VOLAG.
In the health sector, community leaders could be hugely effective for
gaining self-sufficiency. Volunteer health workers could assist new refugees in
transportation, translation, and basic information. Simultaneously, many of the
governments programs (TANF, SSI) require volunteer hours of its beneficiaries.
Organizing health workers and volunteers from the refugee communities could be
54


an effective way to utilize transcultural capital and more effectively break down
the structures of the American health system to be understood and utilized.
There is certainly a space for initiatives that are structured and/or created
by refugees themselves. There is a documented utilization of such programs; their
ambiguous record of effectiveness and sustainability suggest that much can still
be learned in order to establish an effective model (see Meertens 2006; Kelly
2006; Rajasingham-Senanayake 2006). The discourse of empowerment is useless
if empowerment is not the end result.
I would strongly recommend more frequent interaction between the health
office of the VOLAG and interested members of the refugee community. While
community activities are supported and encouraged by the VOLAG, this is
lacking in the health sector. Monthly meetings, with the explanation of basic
components of health system, would encourage the participation and education of
community leaders who could, in turn, further educate their friends, families, and
communities. This access to information within refugee communities could help
mitigate the disadvantages of lacking economic capital, language skills, or
immediate family. Such empowerment models were suggested by many of the
refugees in my study, reinforcing the potential contribution that each could make
in improving the resettlement experience for the future displaced. Fatimah, with
her impeccable insight and ability to articulate, provides the requisite conclusion:
55


We are here; we know; we understand. We have been through it all
- to hell and back again. And we want to help. If you can let us
help you, we can add value, we can add knowledge, we can add
experience. We can make it better for the next refugees. We can
make it better for ourselves.
56


APPENDIX A: RESEARCH MATERIALS
In-Depth Interview Questionnaire
Todays Date:_________________
Country of Origin:___________________
Age:
Gender: M F
Signed Consent Form: Y N (Do not proceed until consent obtained)
1. What was it like for you when you got sick in your home country?
2. Is it different for you now in the United States? How?
3. Where do you go to get information about hospitals, health insurance,
appointments, etc.? Is it easy/convenient for you to access this information?
4. Who was the first person to talk to you about health and health care in the U.S.?
What did they tell you?
5. How long did you wait until your first doctors appointment in the U.S.?
6. If you want to go to the doctor, what is the greatest challenge to making that
happen?
7. Can you describe the process you would go through in seeing a doctor (making
appointments, getting to appointments, at the appointment, follow-up care,
prescriptions)
8. What has been your best experience with the American medical system?
9. What has been your worst experience with the American medical system?
10. What would you suggest to improve how the United States handles health care
for refugees?
57


Survey I
Todays Date:____
Country of Origin:
Age:_____________
Gender: M F
1. What are the three biggest challenges to you accessing medical care here in the
U.S.?
0)_______________________________________________________
(2)______________________________________________________
(3)______________________________________________________
2. How long did you wait until your first doctors appointment in the U.S.?
3. What would you suggest to improve how the United States handles health care
for refugees?
4. Are you currently employed? Y N
5. Have you been resettled alone or with family? Alone Family
6. At what level would you consider your English? Poor Okay
Excellent
58


APPENDIX B: HUMAN SUBJECTS APPROVAL
C BoarO. CB F4S0
U'wtiy o< Cokdo. Anc*vu Cmpv*
MIRB '300 E inh PlK*. 6w4t^) UO. Rocm N32m
Aurora. Cototafla MXM5
303 724 1055 [PhO-ie]
303.724 90 [Fax)
ychsc.tu>cormrb [Web)
comirbS jcderrver edu [E-Mail]
FWA0000SC7C [FWA{
Unhestty o( Colorado Hospta
Dome HaaV VtodeaJ Carcar
V*4r#fi' Admantt*iiott Macro* Cantor
The Q-iiaws Hoscnai
Univeitily 0* Colorado D*r**er
Colorado Prextrfton Cam*
Certificate of Exemption
05-Apr-2011
Investigator:
Sponsors):
Subject:
Effective Date:
Anticipated Completion Date:
Exempt Category:
Title:
Jennifer Flemming
COMIRB Protocol 11 -0404 Initial Application
05-Apr-2011
05-Apr-2014
2
Health and Adaptation: Perceptions Of Barriers To Accessing Healthcare In Refugees
Resettled In Denver, CO
This protocol qualifies for exempt status. Periodic continuing review is not required. For the duration of your protocol, any
change in the experimental dcsign/contcnt of this study must be approved by the COMIRB before implementation of the changes.
The anticipated completion date of this protocol is 05-Apr-2014. COMIRB will administratively close this project on this date
unless otherwise instructed either by correspondence, telephone or e-mail to COMIRB@ucdcnvcr.edu. If the project is closed
prior to this date, please notify the COMIRB office in wilting or by e-mail once the project has been closed.
You will be contacted every 3 years for a status report on this project.
Any questions regarding the COMIRB action of this study should be referred to the COMIRB staff at 303-724-1055 or
UCHSC Box F-490.
Review Comments:
Approval Includes
59


HUMAN SUBJECTS APPROVAL (CONTD)
Application
Attachment A
Attachment M Determined to meet criteria for partial waiver of consent for screcning/recru foment purposes and Waiver or
Alternation of Written Documentation
Oral Consent Script
Recruitment Script
Questionnaire
Consent Form
Protocol
Sites (Affiliated)
Downtown Denver Campus
Sites (t'naffiliated)
The African Community Center (ACC)
Sincerely,
UCD Panel S
60


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Full Text

PAGE 1

WHAT WE COME WITH: AN ETHNOGRAPHIC ASSESSMENT OF BARRIERS TO ACCESSING HEALTH CARE IN REFUGEES RESETTLED IN DENVER, COLORADO by Jennifer L. Flemming B.A., Tufts University, 2006 A thesis submitted to the University of Colorado Denver in partial fulfillment of the requirements for the degree of Master of Arts Anthropology 2011

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The thesis for the Master of Arts degree by Jennifer L. Flemming has been approved by Steve Koester Jean Scandlyn Sarah Horton 12/05/2011

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Flemming, Jennifer L. (M.A., Anthropology) Health and Adaptation: An Ethnographic Assessment of Barriers to Accessing Health Care in Refugees Resettled in Denver, Colorado Thesis directed by Professor Steve Koester ABSTRACT This pap er examines challenges and barriers faced by refugees in Denver, Colorado as individuals navigate the American health care system. Personal health care experiences in both country of origin and the U.S. are comparatively explored, emphasizing both the dive rse range of experience and the relevance of the individual circumstance of the refugee in assessing efficacy of health services. The project documents the interconnected nature of culture, socioeconomic status, social networks, and language skills in eval uating the efficacy of health care obtained by newly resettled refugees. Utilizing ethnographic methods, this paper assesses refugees' perceptions of barriers to obtaining health care and how measures of acquired capital facilitate the individual's ability to overcome these barriers. The lack of agency possessed by all participants highlights the structural nature of health care acquisition for the socio economically disadvantaged in the United States, and is further developed in relation to the resettlem en t process and health systems in particular. This abstract accurately represents the content of the candidate's thesis. I recommend its publication. Steve Koester

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DEDICATION I wish to dedicate this thesis to Abraham, always smiling in the fa ce of an overwhelming and lonely journey.

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ACKNOWLEDGEMENT I wish to thank Steve Koester, Jean Scandlyn, and Sarah Horton for the guidance and freedom provided as my thesis committee. In addition, many thanks to Luk e, Jamal, and Hader for delivering insight, patience, and dedication on a daily basis in our office at the VOLAG. Above all, thank you to my honest and enthusiastic study participants who welcomed me into their homes and lives on numerous occasions, and ne ver without the most genuine of hospitality.

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TABLE OF CONTENTS Tables.. vii CHAPTER 1. INTRODUCTION 1 The Refugee Resettlement System... 3 Refugees i n Denver, CO... 5 Literature and Anthropology 6 Methods. 9 2. HEALTH SYSTEMS AND REFUGEES... 17 The VOLAG and Agency... 17 Medicaid. 19 Moving To wards Agency... 21 Health, Habitus and Adaptation..... 23 3. HEALTH AND CAPITAL.... 28 Forms of Capital..... 29 Transcultural Capital.. 34 4. COMPARATIVE HEALTH SYSTEMS 36 Liminality, Refugee Camps and "What We Come With"..... 39

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5. BARRIERS TO ACCESS.. 43 Language ...... 44 Economy....... 46 Transportation... 48 6. CONCLUSIONS ... 50 Recommendations..... 55 APPENDIX A. Research Materials 58 In depth Interview Questionnaire .... 58 Survey I..... 59 B. Human Subjects Approval.... 60 RE FERENCES ... 62

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TABLES Table I: Study Participants for In depth Interviews 12 Table II: Survey II .. 31 Table III: Summary of Survey II Findings 33 Table IV: Bar riers to Accessing Care 43

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1 CHAPTER ONE INTRODUCTION Emmanuel comes from the Congo; he is 64 years old and a former headmaster of a prestigious, private boys school in Kinshasa. It has been closed for years now. Emmanuel speaks six languages and, he tells me, has always thrived i n the academic lifestyle. We are driving home from the opthamologist, navigating the busy streets of downtown Denver while he tells me stories of Congo. His face is glued to the passenger side window, finally able to take in the colors and motion of the ci ty now that he has new glasses. He has been here for almost six months, and is just now able to see again. Here in the U.S., Emmanuel is cleaning rooms at a motel in East Denver. He is trying to study English, but does not have much time to practice with g ood, native speakers. He wants to attend the college and take classes, but he must first pass his ESL exam. This is difficult without the opportunity to practice more. So he reads a lot. And puts clean sheets on 25 beds each morning. And tries to talk to p eople on the bus to work, to practice. He will go back to college, he tells me. It just might take a while. For now, it changes everything to have new reading glasses (field notes, December 2010). This study will examine the challenges faced by Denver's refugee population as individuals attempt to navigate the American health care system. The focus of the research will be on refugees resettled in Denver, Colorado by a local volunteer agency (known, herein, as the VOLAG) and their personal experiences and perceptions.

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2 My study participants originate from an incredible diversity of circumstance from the recent upheaval of middle class life in Iraq to protracted refugee camp life in Nepal and the Congo. Pierre Bourdieu's theory of habitus will be utilized to illuminate the relevance of a refugee's past in determining how they will experience resettlement. In particular, the health care experiences of refugees in both past and present life will be explored and compared; the refugees' ability to act as agenti ve bodies will be discussed in relation to both habitus and past experience interacting with health systems. Applying the concept of habitus to refugees' navigation of the American health care system emphasizes the relevance of pre migration experiences, a nd suggests the value for its consideration by resettlement programs. In addition, this project will explore refugees' perceptions of barriers to accessing health care, and how measures of acquired capital facilitate the individual's ability to overcome t hese barriers. Bourdieu's various forms of capital will provide a framework within which to understand the nature of this struggle. The most critical goal of the U.S. refugee resettlement program is the facilitation of timely attainment of self sufficiency for the refugee; this self sufficiency is contingent upon the possession of various types of capital, as will be demonstrated through the experiences of my study participants.

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3 The Refugee Resettlement System According to the United Nations High Com missioner for Refugees (UNHCR), a refugee is one who: ...owing to a well founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion, is outside the country of his nationality, and is unable to or, owing to such fear, is unwilling to avail himself of the protection of that country (UNHCR 2011). At the end of 2010, there were 10.55 million refugees forcibly displaced worldwide, and 276,000 living in the United States (UNHCR 201 1:2). In 2010, the United States admitted approximately 71,400 refugees (UNHCR 2011:2), the largest quantity, by far, of any other resettlement country (Canada and Australia were next, accepting 12,100 and 8,500, respectively). The state of Colorado resett led approximately 2,600 of the refugees resettled to the U.S. (VOLAG 2010) The process of resettlement begins in the camp to which the refugee has been relocated from his/her country of origin (likely a close geographic neighbor). The UNHCR is the governin g body in this camp, and the United States delegation to the UNHCR will interview those seeking resettlement to the U.S. The refugee must demonstrate proof of "fear of persecution" and undergo extensive background checks and numerous interviews. Ultimately this branch of the UNHCR will either reject or recommend the refugee for resettlement. In 2010,

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4 108,000 refugees were submitted for resettlement consideration (UNHCR 2010:19). The main countries of origin were Myanmar (19,400), Iraq (16,000), Bhutan (14, 800), Somalia (5,400), Congo (4,500), and Eritrea (3,300) (UNHCR 2010). Refugees in Denver, CO "The [resettlement] program aims to take people whose lives have been utterly disrupted, whose kin and community networks those most elemental of safety nets have been attenuated and ruptured, whose expectations may never have been to come to America, who may know no English and have no exposure to an urban, industrial (or post industrial) society, and turn them into functioning, successful Americans. It is hardly surprising that refugees sometimes do not make that transition in an orderly or particularly rapid way." (Haines 2006:7 8) Once assigned official refugee status, a national volunteer agency (VOLAG) will assume responsibility for the coordination of the resettlement process. In Denver, there are currently four VOLAGS working to resettle the nearly 3,000 refugees that annually enter the state of Colorado. The VOLAG is sponsored by two federal offices which provide the majority of the funding for the r esettlement process; these are the Office of Refugee Resettlement (ORR) and the Bureau of Population, Refugees and Migration (PRM).

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5 The VOLAG's responsibilities include reception and placement, case management, housing and employment services, youth pro grams, pre employment training, language training, health coordination, financial assistance, and outreach and development projects. In 2009, this study's VOLAG of focus resettled approximately 600 refugees, with an average case lasting for a five year ser vice period (VOLAG 2010). As such, funding and resources for all services, including health coordination and care, are limited. For the duration of my year of research, I worked as an intern in the health office of the VOLAG. My responsibilities at the VOL AG included running health orientations for new refugees, making clinic appointments, driving refugees to/from appointments, resolving billing/insurance issues, and answering questions regarding doctor visits, medications, insurance, and payments. Assessi ng the health concerns of refugees as well as assisting in their navigation of U.S. health systems is a complicated and time demanding process. For refugee and free clinics, the time constraints of numerous appointments, language barriers, logistical suppo rt, and clashing cultural norms in the health care sector make for an often superficial assessment in which only the most vital health concerns are prioritized and addressed.

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6 Literature and Anthropology The current literature on health and refugees in t he United States focuses largely on mental health issues (see Henderson 2010; Weine 2001; Boehnlein & Kinzie 1995; Penderson 2002). Duly, exposure to conflict, violence, suffering, and the disruption of a former life predisposes many refugees to psychologi cal trauma, most of which is treated in a new and vastly different society. The complex nature of treating refugees is documented extensively in the above literature; Henderson (2010) notes that "with their history of displacement, persecution, fragmentati on of cultural and familial structures, and violation of human rights, displaced persons have a more complicated medical profile than most other patients in the United States." Cultural clashes in medical encounters have been explored considerably in the United States in the decades since the refugee resettlement program began. In particular, southeast Asian refugees and their different explanatory models and etiology of disease have been documented. Fadiman (1997), Uba (1992), and Kleinman (1980) have exp lored the intricacies of the doctor/patient relationship and the implications for cross cultural understanding and communication. These works reflect much of the influential, early literature in medical anthropology. Concurrently, the academic realm of "r efugee studies" has emerged over the last 25 years alongside the discipline of development studies; as such,

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7 studying anything "refugee" has typically been contextualized within a political and international policy framework. Zetter (1988) has extensively explored the label "refugee" and its connotations for the realm of policy, humanitarian response, and international law. Keller (1975) broke down the refugee experience into nine explicit stages as a technique for efficient management of forced migration b y international political bodies. Both of the above sects of research (the former of mental health, culture, and displacement; the latter of the very political "refugee studies") suggest a gap in the literature. The anthropologist Liisa Malkki has sugges ted the potential value of anthropology for contextualizing the circumstance of the refugee; beyond the implications for policy and development to the condition of the individual. Malkki (1995) calls for the foregrounding of the causal historical and polit ical processes of displacement, and a cognizance of the particular situation of each refugee or group of refugees. "The term refugee,'" according to Malkki, "includes within it a world of different socioeconomic statuses, personal histories, and psycholog ical or spiritual situations." (1994:496) Considering displacement through an anthropological lens, utilizing qualitative and ethnographic research methods, allows the refugee and their experiences to be contextualized, and their stories used to illuminate the incredible range and depth of experience. To some extent, anthropology has since embraced the study of refugees (see Ghorashi 2004;

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8 Harroll Bond 1992; Eastmond 2000), but its application specifically to the acquisition of health care and adaptation to other societal structures is still lacking. As such, one of the objectives of this paper is to address the challenges posed to refugees by health care structures in the United States, and utilize an ethnographic approach to highlight and contextualize the experiences of the individual. Methods Sampling Identification of primary informants was done through the health coordination office at the VOLAG. Ideal participants were identified based on demographic information and my own personal knowledge of th e refugees and their particular situations. Refugees with available time, proficient English skills, and expressed interest in health and the health system were sought out as key informants. Specific attention was paid to country of origin, age, and gender in order to establish a diverse initial sample. The primary methodology employed in the sampling phase was the application of Patton's concept of maximum variation sampling. This involved targeting refugees from various regions of the world, differing soc ioeconomic backgrounds, and different demographic features (age, gender, etc.). The logic of this sampling technique is to identify common patterns that emerge from such

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9 variation; themes and experiences that are continuous or shared throughout a diverse s ample are of utmost relevance to the research (Patton 2002). For the Denver refugee population, identifying participants that represented a wide spectrum of those resettled in terms of demographic information would allow for diversity of experience that mi ght illuminate shared concerns. The sample size for this project was forty refugees. Of this number, fifteen were identified for in depth interviews. The remaining thirty five took part in two short surveys. The goal was for the informants to be demograph ically representative of the refugee population of Denver. The final sample achieved this, with seven countries of origin represented, an age range of 19 78 years, and a gender ratio of 17 males to 23 females. Upon obtaining informed consent for participat ion in the study, basic demographic information about participants was obtained through the database at the VOLAG. Relevant information included region of origin, age, gender, family, language skills, employment, time in US, and the number of times help wa s sought from the Health Office at the VOLAG. This demographic information provided a framework within which to analyze the experiences of individuals.

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10 Triangulation Drawing from existing research design employing triangulation techniques in health an d health systems research (Jenkins and Howard 1992; Kopinak 1999), this study utilizes this research methodology because it is an effective research strategy in its ability to offer multiple perspectives in approaching an issue and to employ differing meth ods for evaluating and interpreting data (Kopinak 1999; Patton 2002). The value of both quantitative and qualitative methods in health research has been demonstrated (Kopinak 1999) and an approach that considered both the personal experience and interpreta tions of the individual as well as the external factors affecting that individual was deemed most appropriate for the multi dimensional study of refugee populations. In depth Interviews The primary source of information for this project was the refugees themselves, with the majority of qualitative data garnered through in depth interviews. These interviews focused primarily on personal experience and perceptions. Questions were derived using qualitative interview methodologies, and were mainly descriptive in nature (Gilchrist 1992). The format of the interview involved open ended questions that allowed for conversation, dialogue,

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11 and in depth answers that were directed by the interviewee and ran an average of one hour in length (Gilchrist 1992; Bryman 1988 .) The primary goal of these interviews was to allow the participant to speak openly and at length about their experiences with health systems, both in their country of origin and in the United States since resettlement. Additional questions focused on the process by which a refugee seeks health information and services, and what institutional bodies are most effectively involved in that process. The use of ethnographic research methods and, in particular, open ended informal interviews has been documente d as an effective approach to health services research (Atkinson 1993; Calnan 1988). Calnan (1988) suggests that traditional quantitative methods for quality evaluation in health services have yielded inaccurate perceptions of systems from study participa nts. Anthropology and its research methodologies offer a holistic approach that considers the wider socioeconomic environment and relevant demographic characteristics that may be relevant in evaluating quality (Atkinson 1993). Interviews were designed to r eflect the potential value of such ethnographic methods. All interviews were organized through the VOLAG and I conducted them in person either in the refugee's home or in a close, convenient location (coffee shop, library, etc.) determined by the particip ant. Table I summarizes demographic information for in depth interview participants.

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12 Table I: Study Participants for In depth Interviews Refugee 1 Country of Origin Age Gender Family? Employed? Time in US Chantal Rwanda 31 F Y Y 1yr Grace Congo 43 F Y N 10mons Tsenga Congo 46 M Y N 1.5yrs Mohammad Iraq 39 M Y Y 5mons Amal Iraq 37 F Y PT 2.5yrs Leila Iraq 47 F Y PT 1yr Sibah Iraq 32 M Y Y 6mons Hussein Iraq 41 M Y Y 1yr Bago Burma 27 M Y N 9mons Aung Burma 31 F Y Y 1.5yrs Sonam Bhutan 26 M Y Y 7mons Pema Bhutan 39 F Y Y 2yrs Mariam Eritria 54 F Y N 8mons Rachel Congo 19 F Y In school 8mons Esther Congo 19 F Y School 8mons Fatimah Sudan 38 F Y Y 6yrs Survey I The second method employed for obtaining data was the administration of a short survey (Survey I). Survey I was kept in the Health Office at the VOLAG, and was administered to refugees that came through the office. It was also 1 All names used are pseudonyms.

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13 administered to other refugees at the center; many of these were waiting to meet with case workers, hea lth workers, or doing volunteer service or classes at the VOLAG. Survey I asked three basic questions of the participants: (1) What are the three biggest challenges to you accessing medical care here in the U.S.? (2) How long did you wait until your first doctor' s appointment in the U.S.? (3) What would you suggest to improve how the U.S. handles health care for refugees? The purpose of Survey I was to obtain a larger quantity of responses that would provide a greater representation across the refugee population's de mographics. The questions were deliberately short answer so that the data obtained could be quantitatively analyzed, thus providing a mixed methods element to data analysis. The results of Survey I are discussed in Chapter 5. Survey II I carried out the second survey in my role of health office intern at the VOLAG; the data comprising this survey was obtained through the VOLAG's database and discussion with case workers. The information was used with the

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14 consent of those who took part in Survey I. Four p ieces of information were obtained: (1) Is the refugee currently employed? (2) Was the refugee resettled with family and/or did they have family already in Denver? (3) Does the refugee have [at least] basic English skills and the ability to improve on these skills? (4) Ho w many times has the refugee contacted the health office for assistance? This information was used to determine the relationship between 1/2/3 and 4 above, respectively. Survey II provided another set of data to be analyzed quantitatively. The results are summarized in Tables II and III (Chapter 5). Participant Observation The third type of data used for the study was field notes taken while working as an intern health coordinator at the VOLAG during the year that I conducted research. Daily field note s were kept regarding specific experiences, challenges, and misunderstandings. From driving refugees to clinic appointments or eyeglass fittings to the hours spent on the telephone with the billing departments at local hospitals, the Medicaid helpline, or collections agencies, I

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15 became thoroughly familiar with the logistical challenges facing this population. Through this kind of participant observation, I recorded further notations and reflections about barriers, challenges, and experiences. These observat ions provided a more comprehensive understanding of the circumstances and experiences facing study participants, as well as the knowledge base to recognize patterns and themes prior to data analysis. They also situate the stories told by study participants allowing for a fuller contextualization of the challenges posed to refugees as they attempt to acquire access to health services. Approval for this research was obtained from the University of Colorado's Institutional Review Board in March 2011.

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16 CHAPTER 2 HEALTH SYSTEMS AND REFUGEES Patricia came into the health office today with three new health bills that have gone to collections. I pull the thick, ever heavy ing folder for her baby son, Tsenga, out from my "ongoing cases" drawe r. There are roughly 28 bills inside, dating back to his birthday nine months ago. Many of the bills have been re issued, and a few have gone on to collections. None of the bills can be resolved, as all charges should be covered by the baby's Medicaid (bab y Tsenga is, in fact, financially responsible for his own birth). Medicaid, however, has not yet been issued for the baby and, despite dozens of inquiring phone calls, there is really no way to tell when this may happen. In the meantime, Patricia continue s to bring me bills. I watch helplessly as the bills from Denver Health turn into bills from collection agencies. I wonder what sort of effect this is having on her credit. I wonder how many hours on the phone with that particular collections agent it will take me to resolve the bill once we acquire the baby's Medicaid. I wonder how Patricia, who is just beginning to learn English, is expected to understand any of this, let alone resolve the issue. I force myself to put Tsenga's folder away. There is nothin g to do now but watch the stack of bills continue to grow. (March 2011) The VOLAG and Agency Upon arrival in Denver, the new refugee will attend a series of orientation meetings at the VOLAG. Included in these meetings will be a health orientation. Th e primary purpose of the health orientation is twofold: (1) to acquaint the refugee with the basics of the American health system, and (2) to assess if there

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17 are any immediate and pressing health concerns that should be immediately attended to. Health or ientations last, on average, about 30 minutes. Often, multiple refugees are being attended to. Sometimes, there is more than one language spoken and, thus, multiple translators present. The health worker administering the orientation explains what to expec t at a doctor's visit, how Medicaid works, the concept of confidentiality, and other related topics. He/she will ask a series of questions ranging from the refugee's use of medications, to interest in HIV/AIDS testing, to family planning options. Upon acq uiring basic health information from the refugee, this information is forwarded to Denver's Refugee Clinic, where it is evaluated by a qualified health professional. Upon this evaluation, the first clinic appointment will be scheduled. Among study particip ants, the average amount of time until that first appointment was one month. The central goal of the VOLAG's health office is to provide information, resources, and support for refugees in attempts to facilitate self sufficiency in the health sector. Sim ple methods are employed to do this; for example, when driving a refugee to a doctor's appointment, the health worker may drive along the bus route, showing appropriate stops and bus numbers. The health office, in its official capacity, offers the refugee a ride to his/her first clinic appointment; from there the refugee is required to attend further appointments independently. In

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18 reality, the location of a new appointment may be confusing and complex to get to, in which case the health office will often o ffer transportation beyond the first appointment. Medicaid Amal, 38, is one of over 60,000 Iraqi refugees living in the United States in 2010 (UNHCR 2010). Both she and her husband worked for United States affiliated organizations in Iraq; their family underwent resettlement after receiving threats. With both adults possessing advanced degrees, they were eager to come to the U.S. and begin building a new life for their son and daughter. Currently, Amal works part time as a translator, and her husband wor ks a minimum wage sales job in a warehouse. In the United States, you have to wait long, long time for appointments. It is really difficult, because when you need to see a doctor, you cannot just go. My son has [a chronic condition] and it took us months and months to figure out the proper medication once we were here (different medications were available in Iraq). We had to wait a very long time to see the doctor for the first time, even though we had run out of medicine. It was scary and I did not under stand why we couldn't just go to the hospital. But our friends told us, if we went to emergency room, it cost us probably $2000. It is really difficult because insurance is very confusing, and I do not understand why I cannot just take my children to hospi tal. In Iraq, if something was wrong you go to the hospital and you see doctor. You don't worry about paying for these things, and there is no understanding insurance. Medicaid is complicated, and even now

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19 after two years my husband and I do not really und erstand (Amal, April 2011) One of the most confusing aspects of the American health system, according to study participants, was gaining a real understanding of Medicaid and health insurance. Medicaid is provided for refugees for eight months from the day they arrive in the United States. However, in the state of Colorado, issue of the official Medicaid card can take up to two months. In the interim, many refugees incur large medical bills. These are technically obsolete, as the refugee is officially co vered by Medicaid; still, receiving numerous bills a week for large sums of money is intimidating and confusing. Each day, worried refugees bring these bills into the health office, where health coordinators make long, arduous phone calls to have the bills annulled. Like the ongoing medical bills for Patricia and her son, Tsega, on average I had approximately thirty "on going cases" at a given time in the health office. Of these, approximately half were classified as "waiting for Medicaid." The other ha lf would be "backdate Medicaid." Often, Medicaid is not issued for the exact date of arrival, and the refugee has seen a physician prior to acquiring his/her insurance. In these cases, Medicaid needs to be "backdated" to cover any expenses incurred.

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20 Durin g our interview, I explained this process to Amal. I explained how I spend an average of two hours a day at the VOLAG on hold on the telephone, attempting to explain and correct these situations. She shook her head in disbelief and articulated the concern I have each time I find myself in this particular circumstance: How is it that we could do this ourselves? I want to be independent and not to be always needing the VOLAG. I speak English and I have a good education. I am motivated and a, um, people pers on? But I cannot call these numbers and explain my insurance. I cannot understand all of these problems and I do not have time to be holding on telephone for one hour! How can you expect the refugees to do this themselves? How can we be independent when th is system is so impossible for us to understand or to act in? Moving Towards Agency For many of the refugees that I interviewed, self sufficiency remains an elusive and far off objective. The health sector poses considerable obstacles, and the ability to successfully navigate the American health system remains seemingly unattainable for many of my study participants. The structural nature of the health system appointments, referrals, specialists, co payments, insurance forms, Medicaid, confidentiall y, etc. exists in stark contrast to the health systems in most (if not all) countries of origin of U.S. refugees. Shi and Singh (2008) describe this complexity, stating that:

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21 "U.S. health care does not consist of a network of interrelated components des igned to work together coherently, which one would expect to find in a veritable system. To the contrary, it is a kaleidoscope of financing, insurance, delivery, and payment mechanisms that remain unstandardized and loosely coordinated." (2008:4) Underst anding when or why one is being sent to a different doctor can be terribly confusing to an individual unfamiliar with the specializing nature of the U.S. health system. Additional stress to the refugee is incurred because of the logistical implications of multiple doctors; more bus routes to learn, phone calls to make (in one's second language), papers to bring (referrals, charts, etc.). These seemingly mundane details of health care cause a tremendous amount of confusion for many refugees, and ultimately c ause them to depend on the health office of the VOLAG for a significant period of time after resettlement. Long (2001:49) describes agency as "implying both a certain knowledgeability, whereby experiences and desires are reflexively interpreted and inte rnalized (consciously or otherwise), and the capability to command relevant skills, access to material and non material resources and engage in particular organizing practices." Thus, agency suggests one's ability to gain knowledge and/or skills, and to tr anslate this acquisition into action. For a refugee, this may translate to language skills and the exponential increase in opportunities that arise with improving command of the English language.

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22 While the VOLAG and, specifically, the health office of th e VOLAG, prioritizes education and support for this learning process, it is often most efficacious to make appointments, get referrals faxed, or provide transportation for the refugee. As such, facilitation of the refugee's agency within the health care sy stem is a slow and often challenging process. Health, Habitus, and Adaptation The process of adaptation to life in the United States the coping mechanisms and strategies employed by the refugee can be better understood through application of Pierre Bourdieu's concepts of habitus, capital, and social field (Bourdieu 1986). These principles are useful in illuminating the nature of struggle as the individual vies for and gains access to health care. The conceptualization of health as a social field ur ges one to consider the relational and multidimensional aspects of health and health care, and emphasizes the structural nature of the health system. Power and resources and access to these determine the individual's social positioning in the field of health. These social positions are heavily influenced both by one's habitus, as well as one's access to capital, and are manipulated as the agent struggles to gain and embody

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23 various forms of such capital. 2 Further, power is utilized both by the actor in his/her ability to make decisions and maneuver intentionally within the social field, and in the institutional constraints on that decision making. Power both enables and constrains (Pappas 1990). According to Bourdieu (1980), habitus refers to the "gene rative and unifying principle which retranslates the intrinsic and relational characteristics of a position into a unitary lifestyle." Habitus refers to social norms, conditioned through one's surroundings, society, and culture, that guide behavior and tho ught. One's habitus is determined by exposure to social conditions and experience, and is described by Bourdieu as both structured and structuring (Wacquant 2006). The habitus of the refugee is determined by their previous life with its learned behaviors, circumstance, culture, social norms, and structures. The efficacy of the refugee's adaptation and in particular, his/her ability to access adequate health care can be observed in relation to this habitus. While the habitus of most refugees does not n ecessarily contribute to inequalities in health care access, it may contribute to the reproduction of such inequity. A refugee's social norms and consequent actions may reflect more of past experience than present situation. Upon investigation, this illumi nates the socially stratified nature of health care 2 Capital will be discussed further in Chapter 4.

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24 access and further emphasizes the inadequacy of the health system for serving refugee populations. Amal and Fatimah, from Iraq and Sudan respectively, held positions of professional authority in their c ountries of origin. Both possess advanced degrees and enjoyed financial and career success in their home countries. They owned cars and sent their children to private schools. They possessed a level of independence, of personal drive in their careers, and enjoyed the privileges of upper middle class life. These women have enjoyed [relatively] successful resettlement experiences as well. 3 Fatimah, formerly a dentist in Sudan, has worked successfully for the past three years to save enough money to take her d ental hygienist exams. Amal, while working only part time as a translator, has (with her husband) saved enough money to own a car and move away from the low income housing typical of refugees in Denver. Fatimah offers her opinion on the subject: It's an id ea I call "what we come with." Where we come from, our life before it affects us here. How we adapt, how we live, how we learn to be American. The "what we come with" determines it all and it is the best place for the VOLAG to start. For me, adaptation 3 I use and emphasize the term "relative" to describe the ease of resettlement for these particular refugees. While, from the VOLAG's standpoint these particular cases are often less logistically challenging, the adjustment for these refugees can be as, if not more, difficult because of the stark contrast (and often downgrade) in lifestyle and opportunity.

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25 wa s hard because I knew I was not a doctor anymore, but I was independent and smart, and I had my family. I spoke English. I came with the right skills. To make a good life here. A good life. In contrast, many refugees come from protracted stays in refugee camps. Among my study participants, Emmanuel, Pema and Mariam all lived for at least ten years in refugee camps (in Tanzania, Nepal, and Ethiopia, respectively). Rachel and Esther grew up in camps in Zambia. The originating habitus of former lives (in the ir countries of origin) have already been significantly altered by the structures and routine of life in refugee camps. For Rachel and Esther, the camp is all they have ever known, and has, thus, formed their habitus. Refugees from protracted camp situati ons described the unpredictable nature of life in camps. Each reiterated the unreliability of health care and other services. Sometimes there is a doctor, sometimes not. Sometimes there is the right medicine, sometimes not. Sometimes a health worker can organize a trip to an [outside, often urban] hospital, sometimes that is impossible because you cannot legally leave the camp. You cannot depend on the system, but at the same time, you are dependent on it. (Emmanuel, Congo) Many camp originating refuge es have spent over a decade unable to exercise agency in order to seek medical care. The only systems they have experience navigating are those of the camps, which are depicted by the refugees as adequate and simple, but extremely unreliable. When these re fugees undergo resettlement

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26 and are immediately thrust into a situation demanding self sufficiency and independence, the effects of such habitus quickly become clear. 4 4 It is worth noting that, while re fugees originating in protracted camp placements face clear challenges upon resettlement, they also tend to have the most positive perception of the American health system and its benefits. This comparative approach will be further developed in Chapter 4.

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27 CHAPTER 3 HEALTH AND CAPITAL Mustafa, 78, has been rese ttled alone from Eritrea. He has no English skills, has a long and complicated list of health problems, and as a result of the prior two, cannot work. Today I bring flowers and colorful blankets to his drab, one room apartment to help him decorate. Togethe r we go to the grocery store, and a small convenience store that sells Injera (Eritrean bread), where he attempts to bargain with the cashier. The cashier laughs wildly, yelling at Mustafa in Tigrinya. Mustafa pats my head, and speaks to me for the entire car ride home. I understand nothing, but his head pats continue, and so I assume that I am doing something right. In the months following his arrival, Mustafa will be in and out of the hospital six times. He will be completely dependent on government prog rams for financial support, will be unable to even consider working due to his health and lack of English skills, and will spend his time almost entirely alone. While he does make friends in Denver (Mustafa is incredibly charismatic; a charm perceptible de spite my lack of linguistic understanding), he lives quite far from the other Eritrian and Ethiopian families because of his health concerns. In one of our few translated conversations, I ask him what he needs if he is eating where his social security checks are. I ask him if he understands and is taking his medications properly. Mustafa responds that he loves me, and that he misses his family. He does not want to talk about anything else. (field notes, February 2011) Mustafa possesses virtually zer o capital and no agentive framework within which to act to gain access to it. He has no English skills, poor health, no job, and no social support system. His resettlement exemplifies an incredible flaw in the U.S. resettlement process, as working towards self sufficiency is essentially

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28 impossible. As such, he is dependent on both the VOLAG and government social welfare programs to survive. Self sufficiency in navigating the field of health, and eventual gains in access to capital that promotes such sel f sufficiency, is a primary goal of the VOLAG. As such, considerable investment is made to improve refugees' access to capital. This emphasizes the dynamic nature of health as a social field; with access to employment services at the VOLAG, for example, th e refugee can increase his/her economic capital, making it suddenly feasible to make co payments or pay for medications. Forms of Capital Bourdieu's notion of relational capital was influenced by aspects of Marx's economic theory; namely, that economy i s more heavily dependent on relations between people than on resources per se (Marx 1976). Bourdieu augmented Marx's economic idea of capital to include both social and cultural capital as additional critical resources. While Bourdieu's actual theories we re developed in relation to traditional class distinction, his theoretical framework is relevant in a globalizing, transcultural world. In this study, the concept of capital

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29 is most relevant in illuminating structural barriers and power relations faced by my participants. In the VOLAG's health office, I watched refugees navigate the social field of health over the course of a year. Individuals who once needed assistance to call for an appointment would eventually acquire the knowledge and skills to do so themselves. As English skills improved, riding the bus became less intimidating and confusing. With the support of family members, children stopped missing appointments. In contrast, older refugees who were unable to learn any English continued to understa nd very little about the health care system and typically required assistance for most medical situations. From these observations, it became clear that capital for the refugees embodied three dominant forms, which echoed Bourdieu's theory: language skills (Bourdieu's cultural capital), employment status (economic capital), and family (social capital). With improvement in any of these forms came progression towards self sufficiency. As such, I developed a survey to demonstrate this pattern. From thirty pa rticipants, the status of each form of capital was established. This information was obtained from the VOLAG's database (family), as well as discussion with case workers (English skills, employment). These were then compared with the number of times the re fugee had contacted the health office for assistance (information also recorded in the VOLAG's database). The survey (Survey II)

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30 reinforced my hypothesis that capital would be positively correlated with self sufficiency in the social field of health. Of th e study participants, 100% of those with access to all three forms of capital had contacted the health office less than three times in the past year. Of those with access to two of the three forms of capital, 85% had contacted the health office three to se ven times (the other 15% more than seven), and of those with access to only one form of capital, 90% had contacted the office more than seven times. As surmised, with an increase in access to capital came a decreased dependence on the health office of the VOLAG. The information gathered in Survey II is displayed in Table II, and the results summarized in Table III. Table II: Survey II Gender Age English Family Employ ment Country of Origin Health Office Contact # 1 F 31 Y Y Y Rwanda 1 2 F 43 Y Y N Con go 3 3 M 46 Y Y N Congo 1 4 M 39 Y Y Y Iraq 2 5 F 37 Y Y Pt Iraq 1 6 F 47 Y Y Pt Iraq 1 7 M 32 Y Y Y Iraq 1 8 M 41 Y Y Y Iraq 1 9 M 27 Y Y N Burma 3 10 F 31 Y Y Y Burma 2 11 M 26 Y Y Y Bhutan 2

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31 12 F 39 Y Y Y Bhutan 2 13 F 54 Y Y N Eritrea 4 14 F 19 Y Y School Congo 1 15 F 19 Y Y School Congo 1 16 F 38 Y N Y Sudan 1 17 M 22 Y N N Bhutan 9 18 F 26 Y Y N Iraq 7 19 M 27 N Y N Bhutan 6 20 M 29 Y Y N Congo 4 21 M 42 Y Y N Congo 5 22 F 41 Y N Y Iraq 3 23 F 48 N Y Y Eritrea 3 24 M 41 Y N Y Ira q 5 25 F 40 Y N Y Somalia 6 26 F 32 Y Y N Somalia 5 27 M 61 N Y Y Iraq 4 28 F 60 N Y N Iraq 6 29 M 78 N N N Eritrea 10 30 F 46 N Y N Bhutan 8 31 F 21 Y Y N Congo 6 32 M 20 Y Y N Congo 5 33 F 31 Y Y N Somalia 3 34 F 39 N Y N Bhutan 9 35 M 54 N Y Y Bhutan 5 36 F 54 N Y N Congo 9 37 F 53 N Y N Somalia 10 38 F 59 N Y Y Iraq 5 39 M 32 Y N N Iraq 8 40 M 31 Y N N Iraq 8 M/F ratio: 17/23 Mean: 39 Range: 19 78 % with basic English skills: 73% (29/40) % with family support: 80% (32/40) % current ly employed: 43% (17/40) Number of countries represented: 7 Mean: 4.4 Range: 1 10

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32 Table III: Summary of Survey II Findings Gender M/F: 17/23 Age Mean: 39 years, Range: 19 78 Country of Origin Number of countries: 7 Language Skills Y/N: 29/1 1 Percentage w/ basic skills: 73% Family Y/N: 32/8 Percentage w/ family: 80% Employment Y/N: 17/23 Percentage employed: 43% The vast majority of refugees resettled to the U.S. come with family members or join family members alrea dy in the U.S. Language skills vary dramatically and the VOLAG provides English classes for all those resettled. It is expected, by both the VOLAG and the sponsoring government agencies, that refugees will learn English. Pema, one of my Bhutanese study par ticipants, however, estimated that about 20% of current Bhutanese refugees can actually speak English. She explained to me that : most of the older generation, they cannot. They need their children to translate for them. They just cannot learn English, it is too difficult. That makes things very hard, certainly. They cannot make a doctor's appointment, or even go to the grocery store. They are very dependent on their family.

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33 Transcultural Capital Another important form of capital that emerges from my field notes and emphasizes an effective strategy in the resettlement process is transcultural capital. Meinhof (2006) defines this as "the strategic use of knowledge, skills, and networks acquired by migrants through connections with their country and cul tures of origin which are made active at their new places of residence." The VOLAG employs an effective translation of this idea of "transcultural capital:" the employment of refugees in positions at the VOLAG. Caseworkers, administrative assistants, and the current financial director are all resettled refugees. While there are obvious logistical advantages, i.e. language skills, to hiring refugees, there are other considerable benefits to both the employed refugee as well as those that he or she serves. When Pema and her family were resettled from a refugee camp in Nepal (they originated in Bhutan), the family's case worker was a former Nepali refugee. For Pema, who was resettled with both her aging parents and teenage children, the visibility of her case worker's success was encouraging in the face of a daunting situation. The case worker also understood the cultural norms and practices typical of a traditional Bhutanese household and was able to communicate with even the elderly refugees. This offered co nsiderable comfort to the family as they underwent the initial challenges of resettlement, and they came

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34 to trust and respect their case worker. In addition, with an intimate understanding of the refugee family's situation, the case worker was able to effe ctively and efficiently move them through the initial stages of resettlement. From the perspective of the VOLAG, this is an incredibly effective use of a refugee's skill set; a skill set that exists only in the unique cross cultural space of resettled refu gee. According to Pema: We trusted the CW, and we knew she understood what we were going through. Looking back, I know that she could predict what would be most challenging for us. In particular, for my older parents. Now, when I help others in the nei ghborhood, I can guess which things are most difficult I can explain the difficult bus routes, or how to fill a prescription before there is a problem. Our caseworker understood both worlds, and now I think I can too. I want people in my community to c ome to me for help and to know they can trust me, the same way we respected our case worker.

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35 CHAPTER 4 COMPARATIVE HEALTH SYSTEMS My life in Iraq, it was good. Both my husband and myself, we were very successful and could give my children the things they wanted. When the war came, we made adjustments. But it was still okay. We worked with many Americans, and we worked for a better Iraq. When we were threatened, we knew we had to leave. The U.S. had told us they would give us a good life in America. There were words like freedom and safety and opportunity. I remember those, and thinking it was what was best for my children. If it was just me, maybe I would have stayed. But when you have children, you must go. I didn't think about not being a ble to get a job. I didn't think about my ch ildren not having medical care. (Amal, 38, Iraq) As discussed in Chapter 2, one of the greatest contributing factors to a refugee's perception of the U.S. health system was comparison to the health system in the individual's country of origin. Further, a distinct voice is heard from those whose lives had been recently disrupted in comparison to those originating in protracted camp situations. My interactions with many of the Iraqi refugees was particularly poigna nt in illuminating this reality. Compared to Iraq, I am very, very scared about the medical system here. If I need to go to the doctor, or one of my children needs to go, I know that I have to wait. That is so terrifying, as a mother. If I go to the emerg ency room, I will wait. Then I will also have to pay most of the bill. It is terrible compared to Iraq. There, medical service was very good; if you are sick, you go to the doctor. You do not wait, you do not pay. Even if you are poor, or uneducated, the s ystem is very simple to use. Here, well my husband has a doctor degree, and I have a master degree. We are educated and

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36 motivated. But when we could not get jobs, we did not have insurance. This is so difficult, as a mother, to try to understand if the gov ernment will help us. Sometimes there are programs, sometimes there are not. I have to come to the VOLAG and hope. I hope a lot. I had a good, stable life in Iraq. If I did not have children, I would go back. (Amal) In contrast to Amal are Rachel and Esth er, 19 year old friends resettled from the Congo. The girls grew up in a refugee camp in Zambia, where they learned to speak English and use the internet to communicate with friends and family who had undergone resettlement. Each time I see the girls, we t alk about school (they are working towards their GEDs in order to begin attending the local community college) and whether or not they will finally agree to have their wisdom teeth removed. Each of these conversations is interrupted multiple times by text messages and cell phone calls. They are both adapting quite well to their new lives in Colorado. The hospitals are very good here, I think. In the camp, seeing the doctor, it could be very difficult. Most of the time, I just do not go to the doctor. It is okay, because I was healthy when I was young and so was my family. But when we tried to go, we waited so long and sometimes the doctor is not even there. Even after you wait. In the United States, the hospital, it is very clean, very nice. The doctors are excellent. I feel very good that I can go to the doctor if I am sick. (Rachel, 19, Congo) It makes us feel better, knowing that health is not a worry. I think the United States is a very good place, and I think if I was sick, I would be very happy to have these doctors. I know that I would be taken care of. (Esther, 19, Congo)

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37 Reconciling these extremely different perceptions of health care in the U.S. is quite challenging. For the VOLAG, extending the same services and opportunities to all refugees is standard practice. However, consideration of "what we come with" appears to be important in determining the appropriate provision of services. Studies documenting employment trends in refugee populations compiled by the Office of Refugee Resettlement ec ho this relational conceptualization: "Refugee resettlement thus aims at an enormous social transportation about which even the most rudimentary measure of progress (employment) indicates more about the starting point of the process and the conditions un der which it occurs than about progress per se." (Haines 2006:12) Adjusting the system of resettlement on a case by case basis is, of course, an incredibly significant challenge to the VOLAG and all involved in resettlement. How can organizations deliver consistent services and programs to individuals whose origins are all unique? This concern underlines the challenge of "refugee resettlement" as a broad, uniform process and encourages those in the system to evaluate measures that could more effectively a ccommodate the large disparities and diversity within the population.

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38 Liminality, Refugee Camps, and "What We Come With" Refugee camps "mark physically and symbolically the transition of human beings between societies." (Mortland 1987) My study p articipants were often hesitant to discuss their experiences in the refugee camps. Most were hard working and motivated in their camp lives, learning English and technical skills. All directly mentioned the services lacking, and how their families adapted to whatever resources were unavailable. In many cases, this was in relation to health care. Camps in Zambia, Tanzania, and Nepal were regularly described as "barely adequate" and "just acceptable." In each of these situations, my study participants spoke of a lack of choice, a lack of independence, and a lack of options. Each, in effect, alluded to the utter lack of agency they possessed during their time in refugee camps. Victor Turner's (1969) theory of liminality describes a state where an entity is "n either here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremonial." For a considerable number of refugees resettled to the United States, they have existed in this "in between" state for sign ificant periods of time. Over half of my study participants had spent more than ten years living in camps. This extended period of liminality has lasting effects on the behaviors and social skills of the refugee. Malkki explores this liminality as it perta ins to identity, culture,

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39 and statehood in refugees. She challenges the categorical system that is so often associated with displaced persons, commenting that refuges in camps are ordered and managed; they are considered "meaningful primarily asan object of intervention." (Malkii 1992:34) Malkkii explores the refugees' use of identity and liminality as an expression of personal agency. Her study participants alternately clung to the categorical label of "refugee" as a means of remaining apart from a new so ciety and tied to the past, and dismissed it as a means of integration with local culture. She explores the use of this liminal space as refugees strive to establish identity and stability in a new geographic space, and how this affects access to capital. This analysis provides a useful framework for evaluating the manner in which my own study participants relate to their social standing and status as refugee while attempting to navigate a new and complex set of societal structures. It also emphasizes the d iversity of background from which refugees arrive in the United States. Malkki (1995) comments on governmentality in refugee camps, referring to the "international refugee regime" which includes international organizations, governments, and private institu tions, and their management of "mass displacement." Camp originating refugees have long been the object of intervention, powerless and dependent on the institutional forces and bureaucracies controlling the process of resettlement.

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40 Upon resettlement to t he U.S., refugees are thrust into a sort of full immersion program by their respective VOLAG, and are subsequently deemed self sufficient. Refugees, expected to become functioning and contributing members of U.S. society in a timely manner, are immediately inundated with orientations describing employment, language, health, and social welfare programs. Overwhelmed, many fail to adapt. Some, like Mustafa, will remain in a liminal existence for the remainder of their lives. Brought to the United States for a new, better, and safe life, he instead remains on the outskirts of a foreign society, entirely dependent on that society its VOLAG and its funding one that could not exist in greater contrast to his former life, nearly fifteen years ago in Eritrea. Oth er participants spoke of older refugees and the particular challenges of resettlement for them. Pema spoke at length of her elderly parents, and their inability to adjust to even the simplest aspects of American life. A few Bhutanese traditions were still performed in their household, she told me, adding : R eally, though, we are so far from Bhutan. We were in camps in Nepal for many, many years. My parents, they have many memories. But some have changed over time. So much is not even Bhutan. So where are t hey from? What are they remembering? From life in Bhutan, or life in Nepal? And do they realize they are building a new life, once again, here in America? I cannot really imagine. Sometimes, it is very frustrating. But I cannot imagine for elderly refugees who do not have young family. How can they

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41 come here and really become American? Because, I think it is too difficult, if you are older. This is very sad for me to think abou t. What can certainly be gleaned from my participants' stories is that the capi tal necessary to emerge from this liminal space was of utmost importance to the resettlement process. As refugees gained access to capital, they transitioned from this liminal state toward immersion in U.S. society. The ability to access this capital, howe ver, ranged widely depending on the refugee and his/her particular circumstance, life history, and experiences. While the VOLAG certainly makes definitive efforts to maximize access to this capital, the resettlement system as a whole does not differentiate between refugees based on their origin. Extending distinct services to refugees categorized as "challenging" for immersion such as the monolingual, the elderly, or those originating in protracted camp situations could reduce the number of individuals who, upon resettlement, continue to exist in the in between of past and future. Identifying specific barriers to accessing services, and determining methods to mitigate these challenges for groups/individuals is critical.

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42 CHAPTER 5 BARRIERS T O ACCESS Survey I asked the participant to identify the three greatest challenges to accessing health care. Of the thirty participants surveyed, 100% identified language, 85% identified transportation, and 85% identified economic concerns as the greates t barrier to health care. Other factors were logistical in nature (i.e., 50% noted Medicaid and 50% said making appointments). Table IV summarizes the findings of Survey I. Table IV. Barriers to Accessing Care Number of Respondents Barriers Language 40 Transportation 34 Economics 34 Other 10 Total: 118 (40 participants naming three barriers each)

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43 Language Every refugee I interviewed discussed language as a significant impediment to seeking health care. Even for refugees with strong English skills, many of whom were working as translators at the time of this research, navigating the health system in their second language posed serious challenges. Medical jargon is both confusing and frustrating. My participants cited an extensive vocabulary that must be learned and understood in order to independently seek care: referral, confidentiality, primary care physician, Medicaid, copayment. These English terms, as well as the associated action of the patient require both linguistic skills and the ability to ask questions and converse in English. Any hospital or clinic that accepts Medicaid is also required, by law, to provide translation services (CMS 2011). This is, ideally, an individual translator or, m ore often, a language line which provides translation over the telephone. My study participants cited the language line as confusing and often entirely ineffective. Pema, for example, discussed the challenge this posed for her mother when attending a clini c visit without translation. Without Pema's explanation of the process, her mother was unable to grasp the idea that there was someone

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44 speaking Nepali on the other end of the telephone, and the translation was, thus, entirely ineffective. Further, langua ge was discussed by my participants as a barrier to even attempting to seek care. How can my mother even try to go herself? She certainly cannot understand anything over the phone. Even if she just called a number and said Nepali' over and over again, a s she had been told to do. This has not worked. And how can she go to an appointment at the hospital? She cannot read signs, she does not know how to ask for directions. It is terrifying for refugees to not be able to communicate. To ask for help. (Pema, 3 9, Bhutan) Language barriers pose a serious challenge for a significant percentage of the United States population. Flores, in a 2006 study of language barriers to medical care in the United States, estimated that almost 50 million individuals were not p roficient in English. The study found that in 46% of emergency room cases where English proficiency was limited, translation services were not performed (Flores 2006). Further, only 23% of teaching hospitals even offer physician training for the medical us e of interpreters (Flores 2003). There are currently no laws in the United States that require any data collection or inquiry into the patient's English proficiency or primary language. The only federal mandates that exist are the above mentioned interpre tation service requirement for hospitals that accept Medicaid.

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45 Language barriers pose further logistical challenges for the refugees I worked with in Denver. On more than one occasion, I accompanied a refugee to an appointment only to be informed that no translator was available, despite the law. Another time, a female refugee and I arrived at a mammography clinic and were met by a male translator. Extensive apologies were issued on both occasions, and the appointments were rescheduled. This, however, r equired another day of unpaid leave from work for the patients, as well as additional logistical support of a VOLAG worker. Economy Mariam has been in the United States for nine months. She was resettled from Eritrea with her two daughters, aged 19 and 2 1. When they were selected for resettlement, they left behind Mariam's husband and two sons, age 25 and 28. Since coming to the U.S., Mariam has been diagnosed with a chronic health condition which requires her to take multiple medications each day. Medica id covered the cost of these medications for the first eight months in the U.S., but now her Medicaid benefits are expiring. Her condition keeps her from working full time. Her older daughter works at a local convenience store, but the younger daughter has been ill since resettlement and cannot work. Thus, the 21 year old daughter, in her minimum wage job, is the sole provider for this family of three.

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46 When I interview Mariam, she expresses fear, sadness, and regret for coming to the U.S. without her husban d and sons. She is particularly upset on this day and tells me that she sees no solution. She needs help, and there is simply no one to give her help anymore. The VOLAG cannot help for any longer; it is time for the women to be independent. But given their health concerns, their employment options are incredibly limited. Mariam tells me that she wishes she was still in the camps in Eritrea, and that she expects to die from her condition. Studies of health care access among immigrants to the United States e cho the economic concerns of my study participants, and underline the complex nature of the U.S. health care system for the displaced. Leclere et al (1994), Ku (2001), and Flores (1998) document lack of insurance, Medicaid, and financial insecurity as the most significant factors in the under utilization of medical services amongst immigrants in the United States. Mariam voices her fears in the face of such economic insecurity: I don't know how we can even afford to live; to eat, to pay for the rent, to pa y for medicines. If my husband and sons were here, maybe we would be successful. We could have enough money. But now, we are a sick home. Myself and my daughter. And I think that maybe there are programs for us? To help us? I think that we could still get help. But I don't know how. I don't know where to go, who to ask for help. I mostly wish I was still in Eritrea. At least then we have enough money to live on. To take care of ourselves. I don't know how I am supposed to pay for anything here.

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47 Trans portation Today I attended a focus group at the VOLAG, where a number of refugees talked about challenges and the resettlement process. Most discussed the typical problems that we encounter in the health office each week. One woman, however, told a detaile d story of her first hospital appointment. She, her infant child, and young daughter did not know how to get home from the hospital, and so walked four hours back to their apartment. She had no phone, no phone numbers, no idea how to use the bus, and no id ea how to ask for directions. So they just started walking. The health director and I stared at each other, horrified. No matter how much you do, you always miss something. (field notes, December 2010) The majority of my study participants commented on the confusion of the Denver public transportation system as a definite barrier to accessing health care. Upon resettlement, a refugee is provided with monthly bus tokens for the period of service at the VOLAG Beyond this, the refugee is responsible for l earning bus routes and stops for themselves; a process study participants described as confusing, intimidating, and even terrifying. The time constraints of bus schedules pose challenges for work, as one cannot simply schedule an appointment during lunch b reak. Older refugees may have a difficult time walking from bus stops to the hospital. Multiple small children can complicate travel logistics. Ultimately, the ability to effectively use public transportation is tied to both above mentioned barriers. With increased language skills, asking directions or understanding stops

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48 and routes becomes less challenging. With increased income, a refugee can ride the bus more frequently, gaining confidence and knowledge of the city. All three identified barriers are clos ely tied to capital, and to the greater agency possessed by the individual with increasing access to such capital.

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49 CHAPTER 6 CONCLUSIONS After a year working in the health office of the VOLAG, I had certainly expe rienced many of the challenges faced by refugees as they seek to navigate the American health care system. While I was able to draw from my field notes and personal experiences, I found that the stories told to me by individuals both illuminated and elabor ated on many of my own observations. My study participants, through their willingness to tell long, personal stories of their lives from homeland to camps to resettlement shed light on the shortcomings and errors of the system whose very goal is to hel p them adjust to American life. Fatimah's concept of "what we came with" is a striking example of a refugee's take on resettlement. The idea that past experience hugely determines an individual's predisposition to the resettlement process understanding how they will cope, what will be hard, what will be easy, what will take longer is critical in evaluating how to serve this population. Providing the most effective services to meet the needs of each individual refugee is essential. While a primary goal of the

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50 VOLAG is to encourage an individual's agency, it is also necessary to acknowledge the particular characteristics of the health care system in the United States that pose barriers, and make appropriate efforts to acquaint refugees with this system in an effective manner. The health office of the VOLAG does this well, as each of my study participants eagerly expressed. My research revealed a strong relationship between access to capital and the refugees' ability to act independently. Using Bourdeiu's theoretical framework of capital and social field, the relational nature of the field of health is observed as refugees vie for access to capital that will increase their ability to use the health system effectively. Refugees with access to the most impor tant forms of capital (employment, family/social network, and English skills) displayed significantly greater agency in their ability to make appointments, get to the clinic, and utilize health insurance. With decreased access to capital, this agency visib ly declined. While facilitating access to these forms of capital is a primary goal of the VOLAG, its relevance to the health sector cannot be overstated. A number of my study participants were unemployed after almost a year in the U.S. This appears to be a failure of multiple actors in the resettlement structure; this failure influences all aspects of the refugee's adaptation process, including health. Access to capital is also relevant for the resettlement program at the national level. Mustafa's case hig hlights the danger of resettling an individual

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51 incapable of making the transition to American life. His [likely] permanent dependence on the American welfare system, as well as his inevitable persistence in the liminal space between his past life and U.S. society certainly illuminates a tragic flaw in the system. By exploring the relationship between the agency of the individual and the structures of the health system, the agency/structure dichotomy appears inaccurate in assessing refugees' access to heal th and health care. Traditionally, emphasis on structure has neglected the role of agency, and vice versa (see Pappas 1990; Kleinman 1980; Waitzkin 1984). Instead, a complex social field, in which the agency of the individual is grounded in the interactio n with other refugees, the VOLAG, hospitals, doctors, and various welfare programs emerges from the research. Within this field, the dynamic relationship between the refugee/patient and the health care structures becomes apparent. The refugee maneuvers wit hin this field in order to gain capital and power; this in turn increases that individual's ability to understand and utilize the relevant institutional structures. This maneuvering reinforces the nature of the system; namely, the requirement of monetary c apital, communication skills, basic medical knowledge, and comprehensive financial/insurance knowledge in order to utilize that system. The action of the individual can, at times, support that system while, at others, challenge or transform it.

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52 The social field further demonstrates how interminably tied to power health and health care is. With good health comes the ability to work, to support oneself and one's family, and to be a productive member of U.S. society. This belies the cyclical nature of the rel ationship. One simultaneously requires capital to access the health care system (and, subsequently, good health) and good health to be a productive actor that is able to acquire the necessary capital. Cognizance of this cycle and the entwined nature of hea lth and capital is critical in order to define effective strategies that improve refugees' access to both. My study participants were clear and concise in describing the most challenging barriers one must overcome to access heath care. Transportation, l anguage barriers, and economics (be it unemployment or the inability to understand Medicaid/health insurance) were clearly voiced as tremendous obstacles to independence in the health sector. Both transportation and language barriers are issues which the V OLAG could certainly address more closely. Unfortunately, the economic barriers addressed by study participants points to a much greater and more pervasive problem in the United States; namely, the existence of huge disparities in access to health care bas ed on socioeconomic status. Further, the rapidly changing state of the United States economy has rendered resettlement programs extremely vulnerable.

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53 Finally, my relationships with my study participants have contributed greatly to the nature of my researc h, its trajectory, goals, and results. In considering these relationships, my own work with the VOLAG, and my own perceptions and values, it is obvious that removing myself from the research would lead to an inaccurate portrayal of the processes of this st udy. According to Michael Burawoy (2003), interrogating one's relation to the world one studies is not an obstacle but a necessary condition for understanding and explanation." Through this reflexive ethnography, I acknowledge that my work as health coord inator came with its own motivations and also established a particular power dynamic between myself and my study participants. However, the refugees in my study regularly interacted with Americans working within the resettlement system, and their eagerness to participate in this study demonstrates a real desire to have their voices heard. I reported my analysis of the interviews to my study participants, and all enthusiastically supported my conclusions. Furthermore, working within the refugee resettlement system allowed me a deeper, experientially based understanding of its structure. The long hours spent on hold with the Medicaid hotline or attempting to work the language lines at a hospital provided a personal experience of the challenges my participants described. My work as health coordinator was deeply entwined in my research. I acknowledge

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54 both the possible implications for objectivity, and the additional insight it provided into Colorado's refugee resettlement system. Recommendations This researc h illuminates some of the major challenges faced by refugees upon resettlement to the United States; it also coincides with much of the literature on resettlement programs and, specifically, on health care for refugee populations. For me, the interviews al so highlight refugees' desire to empower themselves. Fatimah, Pema, and Amal have all worked hard since coming to the U.S. and have established lives for themselves and their families while giving back to the refugee community. All three women specificall y mentioned the need for community leaders, and for this type of leadership to be encouraged by the VOLAG. In the health sector, community leaders could be hugely effective for gaining self sufficiency. Volunteer health workers could assist new refugees in transportation, translation, and basic information. Simultaneously, many of the government's programs (TANF, SSI) require volunteer hours of its beneficiaries. Organizing health workers and volunteers from the refugee communities could be

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55 an effective w ay to utilize transcultural capital and more effectively break down the structures of the American health system to be understood and utilized. There is certainly a space for initiatives that are structured and/or created by refugees themselves. There is a documented utilization of such programs; their ambiguous record of effectiveness and sustainability suggest that much can still be learned in order to establish an effective model (see Meertens 2006; Kelly 2006; Rajasingham Senanayake 2006). The discours e of empowerment is useless if empowerment is not the end result. I would strongly recommend more frequent interaction between the health office of the VOLAG and interested members of the refugee community. While community activities are supported and en couraged by the VOLAG, this is lacking in the health sector. Monthly meetings, with the explanation of basic components of health system, would encourage the participation and education of community leaders who could, in turn, further educate their friends families, and communities. This access to information within refugee communities could help mitigate the disadvantages of lacking economic capital, language skills, or immediate family. Such empowerment models were suggested by many of the refugees in m y study, reinforcing the potential contribution that each could make in improving the resettlement experience for the future displaced. Fatimah, with her impeccable insight and ability to articulate, provides the requisite conclusion:

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56 We are here; we know; we understand. We have been through it all to hell and back again. And we want to help. If you can let us help you, we can add value, we can add knowledge, we can add experience. We can make it better for the next refugees. We can make it better for our selves.

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57 APPENDIX A: RESEARCH MATERIALS In Depth Interview Questionnaire Today's Date: _______________ Country of Origin: _________________ Age: Gender: M F Signed Consent Form: Y N (Do not proceed until consent obtaine d) 1. What was it like for you when you got sick in your home country? 2. Is it different for you now in the United States? How? 3. Where do you go to get information about hospitals, health insurance, appointments, etc.? Is it easy/convenient for you to access this information? 4. Who was the first person to talk to you about health and health care in the U.S.? What did they tell you? 5. How long did you wait until your first doctor's appointment in the U.S.? 6. If you want to go to the doctor, what is the greatest challenge to making that happen? 7. Can you describe the process you would go through in seeing a doctor (making appointments, getting to appointments, at the appointment, follow up care, prescriptions) 8. What has been your best experie nce with the American medical system? 9. What has been your worst experience with the American medical system? 10. What would you suggest to improve how the United States handles health care for refugees?

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58 Survey I Today's Date: _______________ Count ry of Origin: _________________ Age: ________________ Gender: M F 1. What are the three biggest challenges to you accessing medical care here in the U.S.? (1) _____________________________________________ (2) __________________________________ ___________ (3) _____________________________________________ 2. How long did you wait until your first doctor's appointment in the U.S.? _________________________________________________ _________________________________________________ ____________ _____________________________________ _________________________________________________ 3. What would you suggest to improve how the United States handles health care for refugees? _________________________________________________ ___________________ ______________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ 4. Are you currentl y employed? Y N 5. Have you been resettled alone or with family? Alone Family 6. At what level would you consider your English? Poor Okay Excellent

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59 APPENDIX B: HUMAN SUBJECTS APPROVAL

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60 HUMAN SUBJECTS APPROVAL (CONT'D)

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