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Journal of Immigrant and Minority
Health
ISSN 1557-1912
J Immigrant Minority Health
DOI 10.1007/s10903-012-9740-1
A Comparison of Health Access Between
Permanent Residents, Undocumented
Immigrants and Refugee Claimants in
Toronto, Canada
Ruth M.Campbell, A.G.Klei, Brian
D.Hodges, David Fisman & Simon Kitto
1 23
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ORIGINAL PAPER
A Comparison of Health Access Between Permanent Residents,
Undocumented Immigrants and Refugee Claimants in Toronto,
Canada
Ruth M. Campbell •A. G. Klei •Brian D. Hodges •
David Fisman •Simon Kitto
Springer Science+Business Media New York 2012
Abstract Understanding the immigrant experience
accessing healthcare is essential to improving their health.
This qualitative study reports on experiences seeking
healthcare for three groups of immigrants in Toronto,
Canada: permanent residents, refugee claimants and
undocumented immigrants. Undocumented immigrants
who are on the Canadian Border Services Agency depor-
tation list are understudied in Canada due to their precar-
ious status. This study will examine the vulnerabilities of
this particular subcategory of immigrant and contrast their
experiences seeking healthcare with refugee claimants and
permanent residents. Twenty-one semi-structured, one-on-
one qualitative interviews were conducted with immigrants
to identify barriers and facilitators to accessing healthcare.
The open structure of the interviews enabled the partici-
pants to share their experiences seeking healthcare and
other factors that were an integral part of their health. This
study utilized a community-based participatory research
framework. The study identifies seven sections of results.
Among them, immigration status was the single most
important factor affecting both an individual’s ability to
seek out healthcare and her experiences when trying to
access healthcare. The healthcare seeking behaviour of
undocumented immigrants was radically distinct from
refugee claimants or immigrants with permanent resident
status, with undocumented immigrants being at a greater
disadvantage than permanent residents and refugee claim-
ants. Language barriers are also noted as an impediment to
healthcare access. An individual’s immigration status fur-
ther complicates their ability to establish relationships with
family doctors, access prescriptions and medications and
seek out emergency room care. Fear of authorities and the
complications caused by the above factors can lead to the
most disadvantaged to seek out informal or black market
sources of healthcare. This study reaffirmed previous
findings that fear of deportation forestalls undocumented
immigrants from seeking out healthcare through standard
means. The findings bring to light issues not discussed in
great depth in the current literature on immigrant health
access, the foremost being the immigration status of an
individual is a major factor affecting that person’s ability to
seek, and experience of, healthcare services. Further, that
undocumented immigrants have difficulty gaining access to
pharmaceuticals and so may employ unregulated means to
obtain medication, often with the assistance of a doctor.
Also, there exists two streams of healthcare access for
RC conducted all one-on-one interviews with study participants and
worked with the community-based organization to plan the research
study. BH, DF and SK assisted RC with the study and interview
design. RC and BH coded the transcripts. SK guided the study
framework and the method of analyzing data. RC wrote the
manuscript, with input and comments from all authors. AK was
responsible for helping RC shape the manuscript into a
comprehensive document. All authors read and approved the final
version.
R. M. Campbell (&)B. D. Hodges
Wilson Centre, Toronto General Hospital, University Health
Network, 200 Elizabeth Street, 1 Eaton South 565,
Toronto, ON M5G 2C4, Canada
e-mail: Campbell.ruth@utoronto.ca
A. G. Klei
The Ryerson Centre for Immigration and Settlement,
Ryerson University, Toronto, Canada
D. Fisman
Dalla Lana School of Public Health, University of Toronto,
Toronto, Canada
S. Kitto
Li Ka Shing Knowledge Institute, St. Michael’s Hospital,
Toronto, Canada
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J Immigrant Minority Health
DOI 10.1007/s10903-012-9740-1
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undocumented immigrants—from conventional healthcare
facilities but also from informal systems delivered mainly
through community-based organizations. Finally, within
the umbrella term ‘immigrant’ there appears to be drasti-
cally different healthcare utilization patterns and attitudes
toward seeking out healthcare between the three subgroups
of immigrants addressed by this study.
Keywords Immigrant Health Health access
Health services research Health disparities
Barriers to healthcare Women’s health Undocumented
immigrants Refugees Refugee claimants Illegal
immigrants Permanent residents Landed immigrants
Immigration Canada
Background
This study was designed to examine how three groups of
immigrants interacted with the healthcare system in Tor-
onto, Canada. The participants were initially recruited
through a community-based organization. As per a com-
munity-based participatory research approach, the study
melded the interests of the community-based organization
and the primary researcher. The primary researcher was
interested in experiences accessing healthcare and the
community-based organization wanted to understand
the needs of a subset of their immigrant clients. Although
the study was not originally designed to assess differences
in immigration status, this factor quickly emerged as the
single most important issue affecting healthcare. For the
purposes of this paper study participants are divided into
three groups: permanent residents, refugee claimants and
undocumented immigrants.
This research study addressed two areas of healthcare
for the immigrant: access and experience. For access there
are three main questions: (1) Who was accessing services,
(2) What services were they accessing, and (3) What
impact did immigration status have on their experiences
accessing those services?
To the primary author’s knowledge this is the first study
to have worked with undocumented immigrants who are on
the Canadian Border Services Agency deportation list. There
are researchers in Canada who work with migrant workers—
some of whom lack documents at some point during their
stay in Canada. Other Canadian researchers work with
persons with ‘precarious status’, a term that includes any
individual whose legal status in a country is not stable.
The scientific literature has revealed several barriers to
healthcare that immigrants may experience. One such
barrier is mistrust of the medical system [1]. For example, a
trusting relationship between immigrants and their general
practitioners is sometimes compromised by previous
negative healthcare encounters experienced by the immi-
grant in their home country [1]. Distrust of doctors is also
propagated by stories circulating within cultural commu-
nities [1]. Language barriers between the healthcare pro-
vider and patient can result in serious detrimental effects
for health outcomes, health status and the quality of care [2,
3]. Bhatia and Wallace [4] explain that language barriers
prevent general practitioners from fully understanding the
patient’s needs, leading to fewer appropriate referrals to
secondary care. Likewise, language barriers make patients
less likely to report problems to a physician [4].
In the United States undocumented immigrants are con-
sidered to be a vulnerable population at higher risk of disease
and injury than both documented immigrants and native
citizens [5]. Social and family networks may be the key
determinants of access to, and use of, health services among
undocumented immigrants living in urban areas [5]. In the
United States, undocumented immigrants arrive bearing a
disproportionate burden of undiagnosed illness and com-
monly lack standard immunizations and other basic pre-
ventative care [6]. Undocumented immigrants often enter the
country under adverse circumstances and live in substandard
conditions, factors that exacerbate poor health [6]. Language
barriers, lack of knowledge about the healthcare system and
fear of detection by authorities are factors that limit the
ability of undocumented immigrants to access healthcare [6].
A study in Spain by Perez-Rodriguez et al. [7] found
that undocumented immigrants were forced to go directly
to the emergency room when they needed general or spe-
cialty medical care. Undocumented immigrants are often
afraid to go to doctors, fearing that they may be detained or
reported to immigration authorities and then deported [8].
Fear of deportation also leads undocumented immigrants to
be constantly switching residences in order to evade
authorities, a situation which does not promote stability in
relationships with healthcare professionals [8].
A literature review published by Magalhaes et al. [9]
estimates there are approximately 500,000 undocumented
migrants in Canada. This literature review included infor-
mation up to January 2009. Since then there have been no
updated estimates on the number of undocumented migrants
in Canada. The term ‘‘undocumented migrant’’ refers to
undocumented workers who participate in the Canadian
labour force [9]. ‘‘Undocumented immigrants’’ include all
people who are undocumented; the term includes migrants/
workers but also all other people who lack official status.
Therefore, it is not unreasonable to estimate that the number
of undocumented immigrants is significantly larger than the
number of undocumented migrants. The number of undoc-
umented migrants is also likely higher in 2012 than it was in
2009 when the Magalhaes literature review was published. It
is therefore reasonable to expect that there are well over
500,000 undocumented immigrants in Canada.
J Immigrant Minority Health
123
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This research article includes the first qualitative study
of undocumented immigrants in Canada, specifically those
on the deportation list of Citizenship and Immigration
Canada. This study will examine the vulnerabilities of this
particular subcategory of immigrant and contrast their
experiences seeking healthcare with refugee claimants and
permanent residents.
Description of Undocumented Immigrants, Permanent
Residents and Refugee Claimants
In this study undocumented immigrants are defined as
individuals who have: (A) illegally entered Canada,
including persons who were smuggled or trafficked [9], or
(B) appealed their denied refugee claim on humanitarian
and compassionate grounds and had the appeal rejected and
remain in the country after their removal date; or
(C) legally entered Canada and (1) did not respect the
conditions and terms of their visa, or (2) overstayed their
visa, or (3) used fraudulent documentation [9,10]. Official
estimates of the numbers of undocumented immigrants in
Canada are not known; some sources suggest an approxi-
mate number of half a million people nationally [9].
Refugees can be government assisted or privately spon-
sored to come to Canada and can also arrive in Canada and seek
refugee status upon their arrival. In the case of the participants
in this study all individuals applied for refugee status upon
their arrival in the country; as such they were refugeeclaimants
and were entitled to the Interim Federal Health Benefit.
Permanent residents have full access to provincial
healthcare programs. This study was conducted in Ontario
where permanent residents have the Ontario Health Insur-
ance Plan. They are entitled to the same level of healthcare
service as Canadian citizens living in Ontario. There is a
three-month wait period for Ontario health insurance after
a person has arrived in Canada and permanent resident
status has been granted during which the permanent resi-
dent must acquire private health coverage in order to be
medically insured [11].
Detainment and Deportation from Canada
After an individual has attended a meeting at the Greater
Toronto Enforcement Centre, they will receive written
notification of their removal date from Canada. The date of
removal is usually 1 month after the meeting. At this stage
the person faces a choice to (a) leave the country, (b) go
into hiding, or (c) seek legal support and attempt to over-
turn the order of removal from Canada. ‘‘Go into hiding’’
was a term used by the participants in this study.
Eight of the nine participants in this study decided to go into
hiding upon receiving their removal notice. One individual
sought legal advice and involved the media to help make her
case against Citizenship and Immigration Canada. Her attempts
were unsuccessful and eventually she too went into hiding.
When an individual does not show up at the airport on
their removal date, the Canadian Border Services Agency
will begin to actively look for them. These actions include
going to the individual’s last known residence, phoning
them, going to community-based organizations where the
individual seeks support, raiding shelters, searching sus-
pected places of employment and seeking out the individ-
ual’s children (if applicable).
When someone is detained, they are taken into custody
and brought to a deportation facility. They are detained in
this facility until a flight to their home country is arranged
and then given a seat on a commercial aircraft, usually at the
back of the plane. If a flight can be arranged for the indi-
vidual immediately after detainment, the person will be put
on the plane without being kept in a deportation facility.
Immigrants as a Heterogeneous Group
Previous studies have investigated the primary healthcare
seeking behaviour of immigrants [3,12]. It is important to
note that ‘immigrants’ in these studies are broadly defined
and include several subgroups of immigrants within the
same study. This research project treats each immigrant
subgroup as a separate entity, so the differences and sim-
ilarities can be observed across the three groups.
As the results of this study show, undocumented
immigrants have vastly different healthcare access than the
other two immigrant groups. These differences have
enormous implications for the Canadian healthcare system.
With estimates that Canada has half-a-million undocu-
mented immigrants, the number of people lacking formal
primary healthcare is significant [9].
Conceptual Framework
Community-Based Participatory Research
All research takes place on a continuum, from expert
research on one side to community-based participatory
A NOTE ON SOURCES: The formal process for detainment and
deportation from Canada is not posted on the website of
Citizenship and Immigration Canada nor provided publicly in
any form. The process outlined in the following section is
compiled from information provided by community-based
organizations and advocacy groups in Toronto and interviews
with those groups, participants in the study and immigration
lawyers. To the primary author’s knowledge this is an accurate
account of the deportation process in Canada.
J Immigrant Minority Health
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research (CBPR) on the other [13]. Expert research is
characterized by the control of authority and execution by
the academic researcher. By contrast, CBPR is a collabo-
rative process with authority and execution shared between
members of the organization under study and the
researcher [13]. CBPR has been defined as, ‘‘a collabora-
tive process that equitably involves all partners in the
research process and recognizes the unique strengths that
each brings. CBPR begins with a research topic of
importance to the community with the aim of combining
knowledge and action for social change to improve com-
munity health and eliminate health disparities’’ [14].
Successful CBPR requires the researcher and the mar-
ginalized participants to build a trusting relationship [15].
In the case of this research project, the community-based
organization had a pre-existing strong, trusting relationship
with all participants in the study. The principle investigator
was new to the community and so it was necessary for her
to develop a trusting, open relationship with both the
community-based organization and the participants. This
relationship took over 9 months to build before participant
recruitment could begin.
CBPR promotes joint learning, where the research team
and the participants learn together. When working with
marginalized groups there are often power imbalances that
stem from knowledge and social inequalities between the
participating members of the study. All study members
must be mindful of this and consciously moderate identi-
fied power imbalances through methods like joint learning
[15,16]. In the course of this study, joint learning methods
were used to inform and improve the research process and
the participant experience. During one-on-one interviews
the primary researcher told each participant that she was
coming to learn from them. This approach aimed to
empower the participants and was warmly and openly
received. In this study, and CBPR in general, knowledge
transfer happens in many directions. The participant should
be secure enough in the partnership that they feel able to
share fully from their knowledge and experience. It is
incumbent upon the researcher to convey to the participant
that they understand and value the knowledge being shared.
The importance of addressing inequalities between
study members and researchers was previously recognized
by Koch et al. [15] who stated, ‘‘the researcher should
recognize the inherent inequalities between marginalized
communities and themselves and attempt to address these
by emphasizing knowledge of community members and
sharing information, resources and decision making pow-
ers’’. It should not be assumed that the knowledge and
power high ground is solely the domain of the researchers;
the researchers, the community organization, the partici-
pants or any member of a study can hold valuable
knowledge and insight. The researcher needs to be aware of
the privilege and power that they hold. The researcher
should also be reflexive of where they are situated within
the research group.
Working with marginalized persons will always present
challenges, as there are tangible power imbalances that
demand deliberate and constant negotiation and reflection
to ensure equity. They come from difficult situations and
must be delicately engaged. Frequent meetings and open
channels of communication are vital to ensuring that
obstacles can be overcome. Perhaps the most important
element of working with marginalized persons is building
bonds of trust. The researcher must acknowledge power
and privilege and ensure there is value in the project for
marginalized persons. Making all participants equal part-
ners in the project can achieve this.
Scope of Research
This study involved a specific subset of immigrants:
Spanish-speaking women. The rationalization for this was
reached because the community-based organization only
worked with women and was keen to have the primary
researcher work with their Spanish-speaking group. There
were other cultural groups within this organization,
including Chinese, Filipino and other language groups,
however the community-based organization wanted the
researcher to work with the Spanish-speaking group as it
was the newest language specific group in their organiza-
tion. Thus, following CBPR principles of problem identi-
fication, this paper focuses on exploring immigrant issues
through this sub-population.
This paper does not cover issues of gender and culture,
although they are recognized as important and have been
explored in other bodies of literature [17–20]. Issues of gender
and culture will be the subjects of future papers; instead the
focus here is on immigration status and how various statuses
shape the experience of accessing healthcare.
Methods
Participants
A total of 21 participants were involved in this study.
Women within three immigration categories were recrui-
ted: refugee claimants (n =6), permanent residents
(n =6) and undocumented immigrants (n =9) outlined in
Table 1(see below).
Study Setting
The study was conducted at a community-based organization
in downtown Toronto. This community-based organization
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is a recognized destination for marginalized persons,
including permanent residents, undocumented immigrants
and refugees, and offers counseling services with community
support workers, hot cooked meals, harm reduction pro-
grams and language specific support groups.
Recruitment
The study received ethical approval from the University of
Toronto Research Ethics Board. A community support
worker recruited all potential participants with the criteria
that they were from one of the three immigrant groups and
were Spanish-speaking. Forty-three potential participants
attended a 2.5 hour orientation session. During this session
potential participants learned about the study, requirements
for participation, became acquainted with the primary
researcher and had an opportunity to ask questions about the
study and the researcher. As part of CBPR framework the
people attending the orientation session were asked for their
thoughts, input on the study and conditions for their partic-
ipation. Their views about what they wanted out of the study
were also solicited. For instance, some of the potential par-
ticipants at the orientation session wanted the research
findings to be shared with ‘‘powerful people’’. The partici-
pants defined ‘‘powerful people’’ to mean: persons in posi-
tions of authority who could influence policy and decision-
making. The researcher took this, and the other input, into
consideration and made her best attempt to accommodate
these requests. The Chief Public Health Officer of Canada
was invited to attend a presentation to learn about the
research. He attended the session and met some of the
participants.
Following guidelines set out by Kitto et al. [21], pur-
poseful sampling was used to ensure that the number of
people interviewed from each immigration group was
approximately equal. Fifteen individuals participated in
one-on-one, semi-structured interviews between January
and April 2011. Potential participants were told they should
contact the community support worker if they were inter-
ested in being involved in the research study. The first
fifteen women to contact the community support worker
were scheduled for interviews, and were ongoing members
of the research study. Six additional participants were
recruited by initial participants using a snowball sampling
technique and were interviewed from September to
November 2011. Snowball sampling is used to reach,
‘‘difficult-to-access types of participants’’ [21].
Data Collection
A qualitative research approach was adopted to enhance
understanding of the experiences participants encountered
when seeking healthcare [21]. Semi-structured one-on-one
interviews were informed by best practices outlined by
Table 1 Selected demographic information about study participants
Status Years in Canada Country of origin Level of education Age
PR1 Permanent resident 4 Mexico Undergraduate degree 42
PR2 Permanent resident 28 El Salvador High school diploma 60
PR3 Permanent resident 25 Colombia High school diploma 57
PR4 Permanent resident 4 Colombia Undergraduate degree 55
PR5 Permanent resident 4 Venezuela College diploma 23
PR6 Permanent resident 11 Colombia Undergraduate degree 42
UI1 Undocumented immigrant 3 Venezuela Undergraduate degree 41
UI2 Undocumented immigrant 5.5 Mexico High school diploma 45
UI3 Undocumented immigrant 5 South America Undergraduate degree 43
UI4 Undocumented immigrant 4 Ecuador Undergraduate degree 30
UI5 Undocumented immigrant 5 Cuba College diploma 62
UI6 Undocumented immigrant 5.5 Dominican Republic Undergraduate degree 46
UI7 Undocumented immigrant 8 Costa Rica High school diploma 45
UI8 Undocumented immigrant 8 Dominican Republic Graduate degree and Nursing diploma 40
UI9 Undocumented immigrant 7 Venezuela Graduate degree 49
RC1 Refugee claimant 3 Mexico College diploma 40
RC2 Refugee claimant 3 Venezuela Undergraduate degree 55
RC3 Refugee claimant 2 Mexico High school diploma 37
RC4 Refugee claimant 5 El Salvador Nursing diploma 47
RC5 Refugee claimant 6 Costa Rica High school diploma 45
RC6 Refugee claimant 3 Ecuador College diploma 54
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Kvale and Brinkmann [22]. The research team and the
community-based organization developed topics for the
interview guide following a literature review. The interview
guide covered a range of topics including: access to a family
doctor and preventive healthcare, barriers and facilitators of
healthcare and language and cultural considerations when
accessing healthcare. The interview guide was revised as
new themes emerged during the interview process [22]. All
undocumented immigrants were given the option to create a
pseudonym for themselves to help protect their identity.
These participants could sign the consent form with their
pseudonym or an ‘‘x’’, depending on their comfort level.
Language Considerations
The primary researcher conducted all interviews. Inter-
views were conducted in the participant’s language pref-
erence of either Spanish or English. Interviews ranged in
length from 45 min to 2 h. Spanish interviews were
translated by an interpreter from a professional translating
agency specialized in working with women who have
experienced trauma. The primary researcher’s professional
experience and the literature on bilingual individuals in
stressful situations both indicate that an otherwise bilingual
individual will have difficulty speaking in their second
language if describing a stressful or traumatic situation [23,
24]. Javier [23] describes that bilingual individuals shift
languages under anxiety-producing conditions as part of
their coping mechanism. With the exception of two inter-
views, the interpreter was present in case any Spanish was
spoken during the English interview.
Analysis
One-on-one interviews were taped. The researcher’s ques-
tions and the interpreter’s English responses were transcribed
verbatim. A native Spanish-speaking professional then
checked the transcripts against the audiotapes to ensure
accuracy of the initial interpretation. All transcripts were read
and the text was coded into units of meaning [22]. Content
analysis was used to analyze interviews [25]. Content analysis
is defined as, ‘‘a research method for the subjective interpre-
tation of the content of text data through the systematic clas-
sification process of coding and identifying themes or
patterns’’ [25]. A research triangulation process was
employed where the primary researcher, another researcher
who was a part of the research team and a researcher external
to the group separately coded the transcripts. Ongoing con-
versations around coding and data indexing ensured coherent
and consistent analysis [22]. The re-defining and re-interpre-
tation of codes led to a final coding template that was applied
to all interviews. The coded data was grouped into 19 cate-
gories and then further divided into subcategories [22].
Results
Description of Results
The seven sections of results, described below, emerged
from interviews with the participants.
Topic (a): General Perception of Access to Healthcare
Undocumented Immigrants
Undocumented immigrants were largely unable to access
healthcare for either their physical or mental wellbeing.
They had difficulty accessing emergency care, primary
healthcare and in obtaining medication. Undocumented
immigrants feared that seeking healthcare would result in
their being reported to the authorities. Personal safety
would often be chosen over health.
For those that come through illegal channels they
have to sacrifice their health for safety. If I need to
get healthcare I risk being reported by the doctor and
deported back to Venezuela. My safety has to take
precedent over my health. When you are an illegal,
those two things are mutually exclusive entities. -
Undocumented Immigrant 9 (UI9)
Permanent Residents and Refugee Claimants
Conversely, permanent residents and refugees were gen-
erally able to access healthcare for their physical wellbe-
ing. Their experiences in the healthcare system were
mixed, but significantly more positive encounters were
mentioned during the interview process than for undocu-
mented immigrants.
The first experience was to find a doctor that I could
speak in Spanish with. Even though I lived in the U.S.
for six years I could not communicate fluently. I
found a doctor, I have good experience, his services
have been excellent. – Refugee Claimant 2 (RC2)
Topic (b): Family Doctor and Walk-in Clinics
Undocumented Immigrants
For a number of different reasons, many of the undocu-
mented immigrants in this study had never gone to a family
doctor or walk-in clinic.
But they (her friends) say that in the walk-in clinics
here that you need to wait a really long time and you
need to be dying in order to get looked after. - UI7
An additional reason given for never going to walk-in
clinics was a fear of the doctor reporting them to the
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authorities. The emergency room, discussed more fully in
topic (d) was used for primary healthcare.
You have no fucking idea what it is like to be me.
If I get sick I pop pills and wait. And when I say pills
I mean over the counter shit, not prescriptions. If it
gets really bad then I have to decide if I think I will
die. If I think I will, I go to Emergency. If I don’t then
I wait in pain. Why do you ask me about family
doctors? Walk-in-clinics? Are you kidding? I have no
papers. - UI5
Permanent Residents and Refugee Claimants
In contrast, permanent residents in this study had a doctor for
the majority of their time in Canada. Permanent residents
rarely used walk-in clinics or emergency rooms. Refugee
claimants without a family doctor would often use walk-in
clinics as an alternative way of obtaining primary care.
Experiences for refugee claimants and permanent resi-
dents with their family doctors were mixed, but most were
happy with the care they received. Most permanent resi-
dents had been able to find a family doctor who spoke
Spanish. Refugee claimants had mixed success with finding
a language-specific family doctor. The primary complaint
from both refugee claimants and permanent residents was
the amount of time they needed to wait for an appointment.
The other complaint was they could only discuss one
problem with their doctor per visit. Many participants
learned about family doctors who spoke Spanish and
community organizations that provided services to undoc-
umented immigrants through word of mouth.
The reality is that I don’t know anything about the
walk-in clinics. They need to send out information by
flyers. They need to tell people what services are
available and what they charge. Right now I only
access the community centre because I don’t know
how the other things work. For example, sometimes
the community centre will have a stand where a doctor
will come in and take your blood pressure. They
should do more of this. That is what I like. - RC6
Topic (c): Prescriptions and Medication
Undocumented Immigrants
Obtaining medication for health problems was challenging
for undocumented immigrants. Out-of-pocket payment for
medications proved to be impossible for many individuals.
This was especially true for those who did not have the
finances to cover food and housing expenses. One common
solution was to get a doctor to write a prescription under
the name of someone with medical insurance. The doctor
would usually either comply or would give the patient
samples of the required medication.
A lady who I lived with gave me her medication. Then
she took me to a doctor using the name of her daughter
…I went with her. She talked to the doctor first and
told her my situation. She said that I didn’t have
documents and that could (the doctor) please see me.
And if possible, could (the doctor) put my name in as
the name of her daughter. The doctor accepted and
wrote the prescription using the girl’s name. - UI6
Permanent Residents and Refugee Claimants
Permanent residents were able to get the prescriptions they
required. Refugee claimants could obtain most of their
prescriptions. However, some prescriptions were not cov-
ered under the Interim Federal Health Benefit and were too
expensive to pay for out-of-pocket.
My mom had to take pills once for the brain that were
very expensive. Ten tablets were almost $200. I’m
not saying that you can’t find a way to pay the money
but sometimes people just can’t get the money and
you feel like they’re saying, ‘oh ya whatever - die’,
you know. - PR5
Topic (d): Emergency Room Care
Undocumented Immigrants
Emergency care was sought only when the medical situation
was so troubling or painful that the undocumented immi-
grants feared for their lives. This is because undocumented
immigrants believed that healthcare professionals are likely to
report undocumented people to the Canada Border Services
Agency. One of the responsibilities of the Canada Border
Services Agency is finding and deporting undocumented
immigrants from Canada [26]. The undocumented immi-
grants feared that when they were unable to supply either
proof of health insurance or government-issued identification
the Canada Border Services Agency would be called.
When I woke up I was in a different room (in the
emergency room) and I could see policemen. I was very
scared. Thank God nothing happened. I was worried
that the police would call border services. - UI4
Permanent Residents and Refugee Claimants
Typically, permanent residents and refugees use the
emergency room for emergencies and not for primary care
needs. They were not happy with waiting times in the
emergency room.
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One time I had to go to the hospital for an emergency
because my husband had a lot of pain in his chest. We
arrived at 5 p.m. one day and still at 5 p.m. the next day
he still hadn’t received any medical attention …we
didn’t receive any help. We waited so many hours. - PR6
Many were unsuccessful accessing interpreters and had
difficulty communicating with hospital staff.
Researcher: ‘‘Have you been to the emergency room
during your time in Canada?’’
RC1: ‘‘Yes, because sometimes I feel pain in the
anus…All of the emergency people say it’s because of
the stress. I asked for painkillers but he (the doctor) gave
me pills instead for depression. I don’t think he
understand my problem or what I tell him. No interpreter
to help me. He gave me the pills for the wrong thing, but
at least they help me relax and sleep.’’
Topic (e): Language Barriers
With the exception of two individuals in this study who
spoke English fluently, all participants mentioned that lan-
guage barriers were a major obstacle to seeking healthcare.
It (healthcare) was problematic at the beginning
because of the language. I believe it is a big barrier to
express what I feel and how I feel it. I have also met
rude people at the hospital and they don’t have the
patience or the sensitivity to those who are different.
There are people who are completely opposed to this
but I believe that when they identify you as an
immigrant, and you can’t speak the English language,
you can immediately see the discrimination. - PR1
Language barriers were also linked to fear because of
the inability to communicate with their healthcare provider.
I was terrified that I cannot speak the language in case
I was having trouble with my health, I could not
communicate well with my doctor. That was my
experience when I go to surgery. - RC2
Topic (f): Formal vs. Informal Healthcare
The undocumented immigrants and refugee claimants in
this study made frequent mention of Canada having two
healthcare systems: One system for Canadians and people
with an Ontario Health Insurance Program (OHIP) card to
access and a second system used by people without OHIP.
I bet you can get whatever health services you want.
You could waltz into a walk-in clinic or the emer-
gency room, anywhere. They would help you. You
look like the poster child for Canada. How could they
let their poster child with Canadian citizenship and Cana-
dian healthcare insurance get sick? They wouldn’t turn you
away or give you second-rate care. I slink away from
places that you go. I go where the Blacks and Hispanics go.
(Name of community-based organization) thinks I am just
like you. I deserve access to the places you can go. – UI5
Undocumented immigrants also spoke of the treatment
they receive when they go to a hospital or doctor’s office
for healthcare.
I can feel the discrimination when I pull out my
papers. I don’t have OHIP. The receptionist’s face will
take on a look of disdain. I get worse treatment than
the Canadians who have the right card. This is why I
go to (name of community-based organization).They
don’t judge me because I don’t have OHIP. – RC4
Topic (g): Immigration Status
An individual’s immigration status affected that person’s
ability to access healthcare, but it also permeated all other
aspects of their lives. Participants spoke about how their
immigration status affects their safety and security in the
country.
Undocumented Immigrants
Undocumented immigrants would make frequent mention
to their lack of status. Participants envisioned what their
lives would be like if they had ‘‘legal status’’ in Canada.
They imagined legal status would have enormous positive
implications for all aspects of their lives. They would be
able to walk around the city without scanning for police, a
knock on the door would not automatically conjure up
visions of terrifying events, like a visit from the Canadian
Border Services Agency, and they could receive health-
care, ‘‘like all other Canadians’’.
Researcher: ‘‘Is there anything else that you feel is
important that we should talk about?’’
UI7: ‘‘It’s just that when one arrives here (in Canada)
they get scared and they tend to find work with people
like them, who speak Spanish. You are scared because
you know you are not allowed to work without
documents but you also can’t die of hunger because
you have children. So you find ways to do it. Sometimes
hiding, sometimes working here or working there. It
happens sometimes you work and the boss says, ‘sorry I
don’t have money to pay you’. And they don’t pay you.
It’s an abuse of people who don’t have documents.’’
Researcher: ‘‘And you can’t report it to the police.’’
UI7: ‘‘Exactly. Yes, they simply say they don’t have the
money. They don’t pay you and just disappear. They would
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never do that to a Canadian. When you have no documents
you are the lowest caste. India has the caste system and so
does Canada. In India there are the untouchables, in
Canada there are people with no documents.’’
As members of the lowest caste in Canadian society,
undocumented immigrants would compare their lives to
other groups in society. They were convinced that their lives
would improve if they were able to obtain legal documents
giving them right to work, to be paid for their work, the right
to access healthcare and many other rights they lacked.
Refugee Claimants
Refugee claimants describe the stress of having to appeal
their denied claim on humanitarian and compassionate
grounds. For the individual quoted below, her quest for
refugee status took her to the United States, where she
exhausted all of her options. Before being deported back to
her home country, she fled to Canada. Her refugee claim
was denied and, as this manuscript went to press, she was
still in the process of appealing her failed claim on
humanitarian and compassionate grounds.
When you don’t have legal status in a country you are
like a prisoner. I am a prisoner because I don’t have
any freedom…It is like being a prisoner for nine
years. All for my terror of not wanting to be sent to
(her home country) because we have the same pres-
ident of twelve years and he wants to run again next
year. He has all of the power. I can’t go back to (her
home country). I am very nervous about my appeal
being denied on humanitarian reasons. Because
I don’t work, because I don’t speak English, what can
I do? Sometimes I don’t want to wake up. For real, this
is true. If I can do something for my daughter to stay
here, protected, I will ask God to send me for death
because I am so tired and I cannot sleep. It is no life. I do
volunteer job and try to help people. I hope that this
stress will not take me before my time because I have a
daughter to fight for. But sometimes I do not want to
live. I want everything to stop, to finish. There have
been so many years. Nine years. – RC2
This individual was a victim of torture in her home
country 9 years before this interview. She describes feeling
like a prisoner in Canada. Despite being in the process of
appealing her refugee claim, she considered herself to be
without legal status.
Permanent Residents
Permanent residents reflected back on times in their past
when they were struggling for the permanent resident
designation. The individual who is quoted below had
applied for refugee status in the United States and was
denied. After living as undocumented immigrants for
several years, she and her family fled to Canada. This
interview happened 4 months after she and her family had
received their permanent resident papers in Canada.
Researcher: ‘‘How did life change for you when you got
your permanent resident papers?’’
PR5: ‘‘You feel relief. Finally when I see a policeman
and don’t have to run and hide. It’s the best feeling in the
world. I can walk into a clinic with my head held high. I
try not to think about being illegal or the ten-year
process for my family to get status. The only thing that
matters now is we are all permanent residents. Every-
thing is okay for us now. All the stress leaves. I feel for
people who haven’t made it. When you are an illegal you
can’t live life. When we were refugee claimants we
never knew if we were safe, if our claim will be
approved or if we have to run again. Now we are safe.
We have been approved, so it is all okay.’’
Discussion
This study corroborated many of the findings of previous
studies in this area of investigation. We yielded similar
findings as studies out of the United States [5,6] and Spain
[1] that fear of deportation acts as a major barrier to the
ability of undocumented immigrants to access healthcare.
Like Perez-Rodriquez et al. [7], this study found that a side
effect of this fear impact was to destabilize the ability of
undocumented immigrants to establish a consistent rela-
tionship with healthcare providers.
New Contribution to the Literature
This study did generate significant new findings which
have concrete future research and policy/practice devel-
opment implications relating to (a) Immigrants as a Het-
erogeneous Group, (b) Access to Pharmaceuticals
(c) Formal and Informal Healthcare and (d) The Paramount
Importance of Immigration Status.
Immigrants as a Heterogeneous Group
As mentioned in the introduction, ‘immigrants’ in research
studies are often broadly defined and include several sub-
groups of immigrants within the same study. This research
project makes it clear that within the umbrella term ‘immi-
grants’ there appears to be radically different healthcare
utilization patterns. For instance, most permanent residents
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in this study had a family doctor and so did not use walk-in-
clinics. Undocumented immigrants from the study did not
use any form of primary healthcare. They neither had their
own family doctor nor did they use walk-in-clinics. This is
markedly different than the immigrant with permanent res-
ident status.
Though the number of undocumented immigrants
included in this particular study was small, it is neverthe-
less important to note that the patterns and attitudes in their
healthcare seeking behaviour are distinct from refugee
claimants or immigrants with permanent resident status.
Further research studies can determine if the patterns,
attitude and behaviors observed in this study, such as usage
of the emergency room for untreated primary healthcare
problems, can be more broadly generalized to the undoc-
umented immigrant population.
Access to Pharmaceuticals
The methods by which undocumented immigrants obtain
medications and/or prescriptions have not, to the authors’
knowledge, been explored by other studies. Accordingly,
though all issues raised in the results section are important,
this particular issue is being explored to greater depth here
in the discussion section. The literature covers differences
between immigrants and non-immigrants in medication-
taking behaviour, but does not discuss the ways in which a
medically uninsured immigrant secures life saving medi-
cation [27,28].
This study found that uninsured immigrants (undocu-
mented immigrants and in certain cases refugee claimants)
would convince the medical health professional to pre-
scribe medication under another individuals name. Refugee
claimants can obtain some prescription medication through
the Interim Federal Health Benefit, but many medications
are not covered under this plan. This finding has potentially
significant implications for the medical community.
Indeed, the sample size was small, but all of the undocu-
mented immigrants in this study secured medication by
either, (1) convincing a medical professional to prescribe
under another patient name or, (2) received samples in lieu
of a formal prescription. It is therefore not a far stretch to
voice concerns that the pharmaceutically uninsured and
undocumented communities may be compromised in the
way they obtain pharmaceuticals.
Further study is warranted to explore medication
obtaining behaviour of the pharmaceutically- uninsured
individual and undocumented immigrants. Immigrants with
permanent resident status in this study all had additional
medical insurance—usually through a spouse or their
employer—covering their medication costs. This is not true
for all immigrants with permanent resident status. However,
a broader discussion of what medications are covered by
OHIP is beyond the scope of this paper. Other studies may
find that immigrants with permanent resident status, but
lacking additional medical insurance, may face difficulty
paying out-of-pocket for medication.
Formal and Informal Healthcare: Informing Future
Research
When this study began, the focus of the primary researcher
was to understand health access for immigrants within the
formal healthcare system. The researcher defined the formal
healthcare system to be practitioners and institutions that
were established to help the medically insured Canadian
public. Included in this list were hospitals, family doctors,
walk-in clinics, emergency rooms and other state-estab-
lished organizations. However, early in the study it quickly
became clear to the primary researcher that ‘informal
healthcare’, delivered mainly through community-based
organizations, was responsible for the vast majority of the
care received by undocumented immigrants. The partici-
pants in this study became divided into two groups: (1) those
that rely primarily on the ‘formal healthcare system’ and, (2)
those that access ‘informal healthcare’ for their healthcare
needs. Refugee claimants and permanent residents would be
classified into one group as both have medical insurance,
whether it is a provincial health plan or the Interim Federal
Health Benefit. The second group would include undocu-
mented immigrants who are medically uninsured and
therefore largely rely on ‘informal healthcare’.
Undocumented immigrants rely almost entirely on
community-based organizations, specifically ones with a,
‘‘don’t ask don’t tell’’ policy. These are organizations that
do not require any form of identification to access health-
care services. At these community-based organizations a
family physician is available on certain days of the week
and individuals can either make an appointment to see the
doctor or drop into see them. An interesting finding of this
study was that the undocumented immigrant views services
provided by the community-based organization as separate
from the healthcare services offered by the formal health-
care system. While Canada is commonly thought to have a
single, universal healthcare system, many participants
made reference to the healthcare system being ‘‘tiered’’
or a variation on this theme. This idea of a multi-tiered
healthcare system is likely well established amongst those
working with undocumented immigrants. It is therefore
very important for researchers engaging in projects
involving undocumented, uninsured or marginalized pop-
ulations to note this different viewpoint—that many
immigrants view the Canadian healthcare system as tiered.
This understanding can help inform study design and the
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types of information being sought during the research
process.
The Paramount Importance of Immigration Status
This research project indicates that a person’s immigration
status is the single most important indicator of, (a) whether
they can access healthcare and, (b) their experiences
seeking healthcare. Clearly, future research with immi-
grants needs to consider immigration status in research
design. Conflating the two groups within sampling designs
in future research studies would result in the generation of
research findings that could be used to formulate imprecise
policies and practices for these disempowered groups. This
is particularly true in the case of undocumented immigrants
who are remarkably understudied by academics in Canada
[9] and internationally [6,29,30]. Their situation is distinct
from the more commonly studied refugee claimants and
immigrants. Undocumented immigrants face unique chal-
lenges when seeking healthcare and have very different
experiences in the healthcare system.
Limitations: Gender and Language
Findings from this study cannot be generalized to all lan-
guage-speaking groups though many findings from this
study will likely prove to be relevant. The disadvantage of
not being able to share findings from different language
groups is also an advantage. Working with only Spanish-
speaking women unified the group; they all shared the
same language and were from similar parts of the world.
Despite the limitations of the sampling design, the
results of this study do align with many of the themes
found in the immigrant health access literature. The liter-
ature on language and immigrants has indicated that lan-
guage is, indeed, a barrier to accessing healthcare, and
deeply affects an individual’s experience in the healthcare
system [31–33]. This study supports these findings that
language barriers are one of the more significant barriers to
be overcome by non-English speaking immigrants.
Relevance for the Community-Based Organization
The community-based organization sought for this study to
be done in order to understand the needs of their commu-
nity. They intend to use the research findings to tailor
programs to specifically meet the needs of the Spanish-
speaking community. In addition, the community-based
organization intends to use the research findings from the
study to advocate for the allocation of additional fiscal
resources and support.
Lessons Learned: Research with Vulnerable
Participants
Community-based participatory research is not an easy
road to results. Academic textbooks and publications on
community-based participatory research and vulnerable
communities will often convey methodology and research
findings in a crisp and linear way. While this may be useful
for the reader seeking an overview of the research, it is
important to note that engaging with very vulnerable
communities is an enormously complex process. In these
circumstances, research is not crisp and linear; it is blurred
and circular. It requires a considerable amount of adapt-
ability, creativity and resilience from all members of the
research team.
When working with marginalized people it is of crucial
importance to maintain an ongoing evaluation of the pro-
ject and the effect it is having on the participants, the
community and the researcher. Constantly reviewing the
project and making revisions based upon lessons learned
can be onerous, but the approach also provides great value
to all participants. This process helps to enhance the out-
comes of the research, the experience of everyone involved
and is also a great tool for personal and professional growth
for the researcher.
We would encourage future research teams engaging
with marginalized communities to consider employing a
community-based participatory research framework or a
methodology where all team members are equal contribu-
tors to the research and outcomes. All members of the
research team must be learners; they must be willing to
make and learn from mistakes, admit to lack of under-
standing and re-evaluate their approach. This is especially
important when a researcher attempts to engage undocu-
mented immigrants as participants in a research study.
Every aspect of the research process must be thought
through and then re-evaluated. For instance, going over
informed consent once is not enough. For many undocu-
mented immigrant participants in this study the informed
consent process was reviewed multiple times. This gives
the undocumented immigrant an opportunity to understand
the research project and their involvement in great detail. It
also gives them time to generate all questions that may be
weighting on them about participation. The researcher has
to be conscious that the undocumented immigrant may
initially feel participating in the study may put them at risk
for discovery by the authorities and deportation. By
reviewing the research project and informed consent on
two, three or even four occasions, the participant may
develop respect for the researcher’s patience and explana-
tions. In the case of this research study, the process of
gaining informed consent from the undocumented immi-
grant participants took several months. A relationship of
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trust is built through this process. This foundation allows
for the researcher and participant to engage in research
together, research that would otherwise not be possible.
Acknowledgments I offer my deepest thanks to all of the partici-
pants in this study. I am indebted to your strength, resilience and
willingness to share openly in order that others can learn from your
experiences. I thank the community-based organization for welcom-
ing me into their confidence and allowing this research study to take
place. Thank you to Dr. Thomas Stewart and Mr. Joseph Mapa for
their support of this study. Angela Robertson played a pivotal role in
this research study and I am grateful for her on-going guidance
through every stage. I am also indebted to the reviewer for the Journal
of Immigrant and Minority Health who critiqued this manuscript,
your suggestions significantly improved the caliber of the paper.
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