J Immigrant Minority Health DOI 10.1007/s10903-014-0110-z
ORIGINAL PAPER
Healthcare Access for Iraqi Refugee Children in Texas: Persistent Barriers, Potential Solutions, and Policy Implications David Vermette • Rashmi Shetgiri Haidar Al Zuheiri • Glenn Flores
•
Ó Springer Science+Business Media New York 2014
Abstract To identify access barriers to healthcare and potential interventions to improve access for Iraqi refugee children. Four focus groups were conducted using consecutive sampling of Iraqi refugee parents residing in the US for 8 months to 5 years. Eight key-informant interviews also were conducted with employees of organizations serving Iraqi refugee families, recruited using snowball sampling. Focus groups and interviews were audiotaped, transcribed, and analyzed using margin coding and grounded theory. Iraqi refugees identified provider availability, Medicaid maintenance and renewal, language issues, and inadequate recognition of post-traumatic stress disorder as barriers to care for their children. Interviewees cited loss of case-management services and difficulties in understanding the Medicaid renewal process as barriers. Potential interventions to improve access include community-oriented efforts to educate parents on Medicaid renewal, obtaining services, and accessing specialists. Given the enduring nature of language and Medicaid
D. Vermette (&) R. Shetgiri G. Flores Division of General Pediatrics, UT Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX 75390-9063, USA e-mail: [email protected] R. Shetgiri e-mail: [email protected] G. Flores e-mail: [email protected] D. Vermette R. Shetgiri G. Flores Division of General Pediatrics, Children’s Medical Center, Dallas, TX, USA H. Al Zuheiri Mosaic Family Services, Dallas, TX, USA e-mail: [email protected]
renewal barriers, policies addressing eligibility alone are insufficient. Keywords Iraq Refugee Child Barriers Access Affordable Care Act PTSD
Introduction Driven by war and protracted violence, over four million Iraqis have been displaced from their homes since 2003, with almost equal numbers either internally displaced or fleeing to neighboring countries [1–3]. Half of refugees fleeing Iraq are children [4]. Iraqis represent 22 % of US-resettled refugees in the past 5 years [5]. In 2008–2012, approximately 72,000 Iraqis were resettled in the US, including 8 % in Texas [5]. Approximately 75–80 % of Iraqis in Iraq are of Arab ethnicity and 15–20 % are Kurdish. Iraqis recently resettled in the US are predominately Arab [6]. Studies of Iraqi refugees in other countries have shown high rates of chronic disease, disability, and mental-health burden [7, 8]. Most Iraqi refugees have been exposed to trauma and violence, resulting in significant stresses [9], with the greatest impact on children [10]. Mental-health problems are increasingly prevalent among children and adolescents in cities across Iraq [11], and refugee children often arrive in the US with acute and chronic diseases [12], including infectious diseases, nutritional deficiencies [13–17], and high rates of post-traumatic stress disorder (PTSD) [18–22]. For 90 days following resettlement, refugees are supported by resettlement agencies and have caseworkers facilitating healthcare visits. Refugees receive governmental refugee cash assistance (RCA) and medical assistance (RMA) for eight months, thereby ensuring receipt of initial assistance to a group otherwise ineligible for
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J Immigrant Minority Health Table 1 Moderator’s guide for focus groups of parents of Iraqi refugee children and for interviews of employees of refugee-serving organizations, respectively Focus Groups (1) What obstacles have you faced in obtaining medical care for your child? Have transportation difficulties ever prevented you from bringing your child to the doctor? If yes, how so? If not, why not? Has your child ever been denied medical care? For what reason? Is your child uninsured? If yes, why? What have been the barriers to insuring your child? For the first 8 months after resettlement, there are services and cash assistance available to help provide access to healthcare for refugees. Have you noticed a difference in the accessibility of healthcare for your child after cash assistance has ended? If yes, how has it changed? Has your child had difficulty getting health care because he/she and/or you are refugees? Why or why not? Have differences in language or culture been a barrier in accessing healthcare? If yes, how? Has racism or anti-Islamic bias been a barrier to healthcare for your child? If yes, how? Many Iraqi refugees have experienced war and violence before being resettled in the U.S. Has your child experienced any mental-health issues in coping with the traumas endured before resettlement? If yes, what are they? If yes, have you experienced any barriers to accessing care for your child’s mental-health issues? If yes, what are they? (2) Who/what helps you get healthcare for your child now? Local organizations? Family members? Other refugees? If yes, how? If no, why not? (3) How could we make it easier for Iraqi refugees to access healthcare for their children? What would make it easier for you to take your child to the doctor? What suggestions do you have for improving healthcare for children? Interviews (1) What do you perceive to be the most important issues limiting refugees from accessing health services? Do you know any Iraqi refugees who needed to take their child to see a doctor but did not go? What were the reasons for not going? What did they do instead? What barriers do refugees face in accessing healthcare for their children once they are no longer being supported by a resettlement agency? Do you know Iraqi children that are uninsured? If yes, why? What are the challenges to getting them insured? Do language, communication, or acculturation issues affect access to healthcare for refugee children? If yes, how? Are racism or anti-Islamic bias barriers to care for Iraqi refugee children? If yes, how? Many Iraqi refugees have experienced a tremendous amount of war and violence before being resettled in the U.S. Do you know any Iraqi children who experienced mental-health issues in coping with the traumas endured before resettlement? If yes, what are they? Are there any cultural perceptions of mental-health issues that are a barrier to healthcare for Iraqi children? If yes, how? (2) How can we improve access to healthcare services for Iraqi refugee children? What would make it easier for Iraqi refugees to take their child to the doctor? What suggestions do you have for improving healthcare for refugee children?
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Temporary Assistance for Needy Families Program (TANF) and Medicaid. Healthcare utilization and accessibility diminish after the first year of resettlement [23]. The Patient Protection and Affordable Care Act (ACA) affords refugees the same insurance coverage options as US citizens, and is thereby expected to improve access to care [24, 25]. Barriers to healthcare among adult refugees include transportation, finances, and language [23, 26, 27]. Refugee Sudanese youth demonstrate high rates of healthcare utilization for mental health-related problems [28, 29]. There is inadequate information on barriers for refugee children, particularly Iraqis, after eight months post-resettlement. The aim of this study was to identify persistent barriers to healthcare access for Iraqi refugee children and potential solutions from the perspectives of parents and refugee service providers. The changing context of the US healthcare system and implementation of the ACA make this a crucial time to examine access to care for this vulnerable population.
Methods Study Design Four focus groups were conducted from June to August 2011 in Dallas, Texas, with parents of Iraqi refugee children, using a moderator’s guide of open-ended questions and probes (Table 1). Focus-group methodology was chosen because it provides insight into participants’ attitudes, experiences, knowledge, and motivations within their cultural context [30]. Parents were recruited using consecutive sampling [31, 32] in local Iraqi communities. Parents were eligible to participate if they were Iraqi refugees, had a child B17 years old, and had resided in the US for eight months to five years. Eight to ten participants were recruited per group [30]. Groups were conducted in Arabic or English, based on participant preference, and were 40–50 min in duration. Participants completed a sociodemographic questionnaire and received a $20 honorarium. Using a moderator’s guide, eight semi-structured interviews of employees from refugee-serving organizations working with Iraqi refugees were conducted (Table 1). Organizations included resettlement agencies, extended case-management organizations, schools, and refugee clinics. Interviewees were recruited by snowball sampling. Three questions and 14 probes were asked in each 40–45 min interview. A sociodemographic questionnaire was completed, and a $10 honorarium was provided. Informed consent was obtained from all participants. The moderator’s guides for focus groups and interviews were developed by three authors (D.V., R.S., and G.F.). The questions were derived from a review of the literature
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on access barriers to healthcare for refugees and the authors’ conceptual framework for barriers and facilitators to healthcare access. This study was approved by the UT Southwestern Medical Center IRB.
Table 2 Selected sociodemographic characteristics of focus group parents (N = 24) and interview participants (N = 8) Characteristic
Finding
Focus group participants
Analysis Focus groups were audiotaped and transcribed. The three Arabic groups were transcribed and translated into English by the third author (H.A.). The English group and interviews were transcribed by a professional transcriptionist and reviewed for accuracy by the first author (D.V). One interviewee declined to be audiotaped, and a transcript was produced from written interviewer notes. Transcript-based thematic analysis was conducted using grounded theory, in which new theory is synthesized from the data, and existing theories revised and modified as analysis progresses [33]. Three authors (D.V., R.S., and H.A.) independently analyzed the transcripts, to compare and contrast participants’ perspectives on barriers to and facilitators of healthcare access and to identify emerging conceptual domains. The authors reviewed transcripts and identified themes using an inductive, text-driven approach to thematic content analysis [34, 35]. Authors identified preliminary themes using open coding and constant comparative analysis, leading to theme consolidation and extraction, with subsequent iterative discussion and analysis by coding authors to organize and present the themes based in a conceptual framework [31, 36, 37]. Separate taxonomies were generated for focus groups and interviews. Because the primary aim of focus groups and semistructured interviews is to identify qualitative themes [30], frequencies and percentages for themes are not reported.
Results There were 24 participants in the four focus groups. The mean parental age was 37 years old; most were of Arab race/ethnicity, and 67 % of children had Medicaid (Table 2). The interviewees had a mean age of 41 years; 38 % were of Iraqi origin, and 50 % were former refugees (Table 2). Resources for Healthcare Access Resettlement Agency Participants (Tables 3 and 4) reported that resettlementagency assistance facilitated healthcare access within the first eight months. Case managers helped coordinate transportation and interpretation for appointments and
Mean parent age, years (± SD)
36.5 (± 7.5)
Female
71 %
Parents’ religious affiliation Muslim
96 %
Did not respond
4%
Parents’ race/ethnicity Arabic Kurdish Limited English proficiency
92 % 8% 71 %
Parents’ educational attainment (%)1 Did not complete high school
13 %
High-school diploma
21 %
Bachelor’s degree or higher
63 %
Did not respond
4%
Child’s health insurance (%)1 Medicaid
67 %
Private Insurance
13 %
Did not respond
21 %
Key-informant interview participants Mean participant age, years (± SD) Participants’ race/ethnicity2 White
1
41.3 (± 13.1) 75 %
African-American
13 %
Iraqi
38 %
Proportions sum to [100 % due to rounding
2
Proportions sum to [100 % due to identification in multiple categories
assisted with accessing specialists. Interviewees cited a wider breadth of resettlement-agency resources than parents, including Medicaid renewal assistance. Iraqi Refugees Interviewees reported that Iraqi refugees were resilient in adjusting to life in the US. They cited that Iraqis had higher educational backgrounds, more economic resources, higher likelihood of English proficiency, and more rapid acculturation than other refugees. Iraqi parents did not report these resources. Parents and interviewees reported that family and community members facilitate access to healthcare. Healthcare System Participants stated that hospitals offered Arabic interpretation, and Medicaid transportation was available for those
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J Immigrant Minority Health Table 3 Taxonomy of barriers and suggested interventions for access to care for Iraqi refugee children, as reported by their parents
without vehicles. Interviewees reported cultural competence among physicians.
Resources Resettlement agency resources
Barriers to Healthcare Access
Transportation Interpretation
Insurance-Related
Assistance finding specialists Iraqi refugee resources Family members that live in United States Support from other refugees Healthcare system resources Availability of interpretation services at public hospitals Medicaid transportation Barriers Insurance Medicaid renewal process lengthy and difficult Miscommunications between Medicaid office and parents Ineligibility for Medicaid Healthcare-provider related Long wait times for specialty appointments Limited number of providers who accept Medicaid Lack of physicians near areas where they live Inadequate access to dental services Lack of knowledge How to access specialists How to obtain, maintain, and renew Medicaid Healthcare resources for uninsured children Language Poor, inadequate, or nonexistent interpretation services Low health literacy Cultural barriers Acculturative stress Mental-health related
Many insurance-coverage barriers developed upon RMA expiration. The Medicaid renewal process was viewed as burdensome, resulting in periods where children were uninsured. Parents (Table 3) reported delays up to 5 months in Medicaid reactivation after completing renewal paperwork (Table 5). Interviewees stated that parents may not recognize the renewal letter in the mail (Table 4), and ‘‘often, the Medicaid reapplication letter goes into the trash.’’ Miscommunications arose between the Medicaid office and parents. An interviewee said, ‘‘sometimes the Medicaid card won’t come in the mail, and then the client may think that the child no longer has Medicaid’’ Parents and interviewees reported challenges in changing a child’s Medicaid primary-care physician (PCP). Case managers were unable to assist parents in changing the PCP. One interviewee said, ‘‘if we said something from the background like, ‘he needs to change the PCP,’ they were like, ‘Okay ma’am can you shut up? Because she’s not supposed to talk. It has to be the father’s decision.’’’ Participants reported that some children were uninsured, and others were ineligible for Medicaid. Interviewees stated that employer-based insurance was unaffordable (Table 4).
Inadequate recognition of post-traumatic stress disorder Difficulty finding psychologists that accept Medicaid
Healthcare-Provider Related
Culturally unacceptable to seek mental-health services Limitations of resettlement agency assistance Insufficient number of organizations Premature elimination of assistance Eight months not enough time to adjust to American healthcare system and life in US Loss of case manager as cultural conduit Prejudice Financial Financial burden of medical visits Must start from scratch when resettled Affected by differences in welfare systems between different states
Participants reported that the US healthcare system presented impediments to accessing care, emphasizing difficulties in navigating specialist referrals. Parents expressed frustration with long wait times for specialists, limited numbers of physicians accepting Medicaid, and scarcity of providers near their community. Interviewees reported that parents experienced long wait times for appointments, were inadequately informed about clinic location changes, and felt rushed and unable to ask questions using interpreters during appointments.
Suggested interventions Extend refugee services to at least 2 years
Lack of Knowledge
Provide adequate medical interpretation Educate refugees about Medicaid and US healthcare system Provide transportation Assign to doctor with similar cultural background Shorten subspecialty referral process Increase availability of specialists Increase number of caseworkers at refugee-assistance agencies
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Some parents were unable to find treatment for their children’s serious illnesses due to lack of knowledge about accessing specialists. There was parental confusion about obtaining, renewing, and maintaining Medicaid. Parents did not understand procedures for choosing a PCP. One interviewee observed, ‘‘If the parents do not
J Immigrant Minority Health Table 4 Taxonomy of barriers and suggested interventions for access to care for Iraqi refugee children, as reported by employees of Refugee-Serving Organizations Resources Resettlement agency resources
Table 4 continued Difficulty discussing mental-health issues with sensitivity when using interpreter Resettlement agency case management ends at 8 months Suggested interventions
Education on public transportation
Extend refugee services to 2 years
Interpretation
Teach refugees how to navigate US healthcare system
Coordination of care
Educate providers and public about Iraqi refugees and reasons for resettlement
Education and assistance with Medicaid renewal Iraqi refugee resources Higher education level, English-language skills, and economic background compared with other refugees Obtain jobs and have access to employer-based insurance quickly Acculturate quickly Healthcare system resources Arabic interpreters readily available on language lines
Make language interpretation more affordable for providers Provide all health-education and clinic-related information in Arabic Train community members to be medical interpreters Websites with health and healthcare system information written in Arabic Outreach by providers to Iraqi communities and resettlement agencies
Cultural competence among providers Barriers Insurance Difficulty obtaining, maintaining, and renewing Medicaid Refugee medical assistance (RMA) expires at 8 months Difficulty changing primary-care physician through Medicaid Unable to afford insurance Healthcare-provider related Long wait times for appointments Referral system difficult to navigate Parents feel rushed and unable to ask questions when using interpreter Lack of provider knowledge about refugees Lack of knowledge How to access specialists
choose, Medicaid or CHIP will choose for them. The refugee is not aware this happened, and they will take their child to the wrong place.’’ Additionally, some parents were unfamiliar with the distinction between a generalist and specialist, saying, ‘‘understanding that just one general doctor does not resolve all your problems, that’s the issue.’’ Interviewees reported that Iraqi parents did not know how US healthcare works. They noted that parents were often unaware of services available to children, how to obtain services and follow-up appointments, and the process of obtaining employer-based insurance. Language
How US healthcare system works How to identify and obtain healthcare services Availability of language lines at practices How to access employer-based insurance benefits Language Poor or inadequate interpretation services leading to miscommunication and poor health consequences Health-education and clinic-related information not given in Arabic Low health literacy Cultural barriers Acculturative stress Patriarchal family structure Unfamiliar with concept of preventative care Expectations differ from reality of how US healthcare system works Mental-health related Stigma attached to mental-health problems, leading to decreased utilization of services Misunderstandings concerning behavioral health diagnosis and treatment
Limited English-proficiency (LEP) mothers usually took children to appointments, leading to communication difficulties. Language barriers were magnified by inadequate interpretation services. Parents reported that language lines often utilized interpreters who spoke a different Arabic dialect from Iraqis, making the interpreters difficult to understand. Some small clinics were reluctant to provide interpretation. Resettlement agencies, and consequently parents, were sometimes unaware of legal requirements for interpretation. Parents often relied on community members or children to interpret, but as one interviewee described, ‘‘sometimes they (the child) can’t explain the problem correctly.’’ Health education and clinic-related materials also were not provided in Arabic. Cultural Barriers Interviewees cited acculturative stress and patriarchal family structure as impediments to healthcare access for Iraqi children. One interviewee said, ‘‘they are trying to
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J Immigrant Minority Health Table 5 Focus-Group Quotes on selected key issues by parents of iraqi refugee children Barriers Insurance-related ‘‘I don’t know what is the reason that my daughter doesn’t have Medicaid at the current time, and since two months she is without Medicaid, and she is a child, and why the Medicaid stopped. We filled application for Medicaid two times. First time they asked us to fill it again, and second time before one week we sent another application, and there is no replay or interview appointment or any thing from Medicaid office yet’’ Healthcare-provider related ‘‘My son suffering from mental problem due to attack that we had in Iraq by armed gang, and when I tried to find a psychologist for my son, all of them don’t accept Medicaid’’ Lack of knowledge on accessing specialists ‘‘My child has a heart problem, and when she gets sick, I don’t know where to take her, and even when I call a doctor, they said, ‘you should take her somewhere else.’’’ Mental health-related ‘‘I received a call from the school for my kid. (The teacher) said, ‘Your son, when he gets mad at the kids, he pulls a visual rifle and he starts shooting at his teacher, at the kids.’ An imaginary rifle. I told her, ‘My son moved from Baghdad, Iraq. Every time he opens the door, he see a humvee, American soldiers are on it having a rifle in each hand. For reason or without, soldiers or Iraqi soldiers, they would pull the gun and they would shoot at any sort of traps. That’s something that was his daily life. He goes to the store, to the market, to the school and he see humvees, tanks, with people with guns in their hands, once they see a threat, pull the gun, pop pop pop, and they cap somebody. So it’s a normal behavior to him’’ ‘‘Culturally, it is kind of unacceptable for a person because of the pride issue. People are too proud to admit that they have a mental issue that they need help for’’ Increase in barriers when resettlement agency support ends ‘‘Case manager play the role of a cultural conduit between the families and the doctors, the families and the medical facilities, and he break down things and he make it easier to understand for both parties. When this cultural conduit is gone, they’re by their own. And for months they were dependent on the case manager’’ Increase in barriers when resettlement agency support ends: ‘‘It takes two years to understand this situation over here, that’s the bigger problem; what you gave us for eight months is not enough for us, because the system has been changed and so difficult to understand’’ Financial ‘‘People that moved from the country of our origin, they used to get access to the medical facilities within a month, within a week, and sometimes they even don’t have to pay money for it. They pay only pennies, some change. But when they move here, it’s huge amounts of money. I mean, massive numbers, $300,000 for a certain operation. Well, he’s a refugee, how would he get that money? Where would he get it from? ‘‘
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Table 5 continued Prejudice ‘‘Some places and doctors offices or clinics, once they see woman with scarf, they get revulsion, and you can see the way how they treat the others is normal and nice, but with woman with scarf, is different’’ Suggested interventions Extend refugee services to at least 2 years ‘‘They need to give people break when they move here, at least for a few years, like Maine does. Five years is perfect. But they need to adapt and overcome the obstacles before you deny them health services. So they need to increase the time’’
learn and to improve, because they are beginning from zero. Everything is new for them, new life, new system.’’ Interviewees observed that parents were unfamiliar with preventative care and would delay taking a well-child to the doctor (Table 6). Parents reported acculturative stress as the only cultural barrier. Mental-Health Related Parents explained that children were exposed to extreme violence in Iraq prior to resettlement, and PTSD was inadequately recognized. One father said, ‘‘Two times I get shot, carried home full of bullets. My son would be looking at me like, ‘Hey, what’s wrong?’ It’s a daily thing for kids there to see car bombs. Kids in the market with their mothers, boom. Someone got killed and thrown in a trash pile right by their house, and there are kids five, six years old. It’s their daily life.’’ Another father observed, ‘‘some people cannot really know if their kid has PTSD because they suffer it themselves.’’ Parents expressed frustration that there was no PTSD screening upon resettlement, and some parents felt that doctors responded inadequately to their child’s PTSD symptoms. Parents also had difficulty finding psychologists that accept Medicaid. Some parents admitted they had not sought mental-health services for their children because it was culturally unacceptable. Interviewees stated that Iraqis stigmatize mental health problems, leading to decreased service utilization. One interviewee said, ‘‘they think that the family is best equipped to deal with a trauma, instead of a psychiatrist. Even the adults are not very comfortable talking if they have been, for example, survivors of torture.’’ Other mental-health related barriers cited by interviewees include misunderstandings concerning behavioral health diagnoses and treatments, reduction in funding for schools’ refugee counseling programs, and difficulty discussing sensitive mental-health issues when using interpreters.
J Immigrant Minority Health Table 6 Key-informant interview quotes by employees of RefugeeServing Organizations on selected key issues Barriers Insurance ‘‘They’ll come to [Organization] every day saying, ‘I went to the local office every day this week, and they kept telling me to come back with this paper, but I already brought it in.’ I would say that from my experience, if a child is uninsured, it’s not for lack of trying for the parents’’ ‘‘If they aren’t insured, the clinic’s going to often refuse to see the child, and then it takes often 30–45 days to process the case if you’re lucky, and you’re going every day. But during that time, you’re not going to the doctor, and if you need to go to the doctor, your options are often the emergency room’’ Language barrier ‘‘I had an Iraqi client who was receiving interpretation over the phone, and she wanted to ask a question regarding her health, and the interpreter over the phone told her, ‘Don’t ask that. You don’t need to be asking that.’ Essentially it could feel like you don’t have a voice, that you don’t have the ability to say what you want to say and to communicate to the extent that you want to communicate, and it’s incredibly unfair’’ ‘‘When you go to the ER, they give you a paper with the diagnoses and information on that disorder. That never happens in Arabic’’
Table 6 continued ‘‘Having healthcare providers come and talk to them and really say, ‘Hey, you know, I’m a doctor. I’m not this mythical figure out here. I’m someone you can talk to. I can explain a little bit about what’s going on. Do you have some questions?’’’ Location/Method: provide all health-education and clinic-related information in Arabic ‘‘Having someone that’s going to make the effort to recognize, ‘This child hasn’t been to their checkup, maybe we should call them with an Arabic interpreter and find out that maybe they just missed an appointment and didn’t know how to reschedule.’ Or, if you do discontinue accepting a certain type of Medicaid, maybe having someone that’s going to contact the client with an Arabic interpreter to explain to them, ‘We’re no longer accepting your Medicaid, but this is a physician that does accept your Medicaid, and this is their information’’ ‘‘Iraqis love information in their language, so whatever providers want to communicate, Iraqis would love it in Arabic. There could be translated materials on where to access health services and how to access’’
Limitations of Resettlement Agency Assistance
Cultural barriers ‘‘Even if the child is not sick, the child requires a well checkup. When you go in and do intake, you’re telling them, ‘Okay, I’m going to fix an appointment to see this doctor’ and they’ll ask, ‘Why? My child is not sick’’’ ‘‘They believe they cannot be on their own to go to see a doctor. They have to be under control by the husband, by the relatives’’ Mental-health related ‘‘When a child goes to school, and maybe they’re diagnosed with ADHD, and they’re required to be on behavioral health, or maybe they are given the medication, I have seen that resistance to that. And I’m having a feeling that the parent really did not understand what the diagnosis was and what’s the reason for treatment using medication. That resistance has made that case go over to CPS’’ Mental-health related ‘‘Mental health issues are a kind of family shame. They would rather hide the problem than seek help’’ Prejudice ‘‘I know from experience that, oftentimes, staff here in this building view Iraqis as aggressive and somewhat impolite, especially when, usually, their point of reference is the Hispanic population, who tend to be less aggressive’’
Parents reported that there are insufficient organizations to adequately support resettled refugees. Some parents reported that they were offered less assistance when the resettlement agencies discovered they were proficient in English or had resettled family members. Participants reported that barriers to healthcare access increase greatly once resettlement agency case management expires, specifically citing transportation, language, and insurance-renewal challenges. Parents expressed concern that 8 months is inadequate to adjust to the healthcare system and life in the US. Financial Parents reported that the financial burden of medical visits prevented them from taking their child to the doctor, stating that when they are resettled, they must start from scratch financially, academically, and professionally. Parents also expressed frustration with what they perceived as a ‘no money, no care’ structure of the US healthcare system, describing it as a business rather than a humanitarian service.
Suggested interventions Education of general public/providers ‘‘Overall, their lives would be much easier if we just educated the general public that these are people that helped us. They’re not over here because they want to do something to us. It’s because they helped us over there. So, that’s why they had to leave. I think a lot of people just don’t realize that’’ Location/Method: outreach by providers to Iraqi communities and resettlement agencies
Suggested Interventions Participants suggested refugee assistance should be extended to two years to give families time to acculturate and understand the healthcare system. Parents suggested that interpretation services employ Arabic interpreters who speak the Iraqi dialect, clinics provide Arabic health education materials, and private clinics provide interpreters.
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Interviewees suggested that providers create an Arabic website containing health and healthcare system information, and clinics provide Arabic written materials. Interviewees recommended educational programs for refugee parents providing information on scheduling, attending, and following-up after appointments; completion of Medicaid paperwork; and how the healthcare system works. Parents expressed a desire to understand Medicaid and the US healthcare system. Interviewees suggested increased public and provider education on who Iraqi refugees are and why they are resettled in the US, and outreach by providers to Iraqi communities and resettlement agencies. Framework of Facilitators and Barriers We collapsed the themes that emerged into two overarching categories supporting our theoretical framework of healthcare access for Iraqi refugee children: System-related and Socio-cultural. The system-related facilitators included resettlement-agency support and Medicaid transportation. Facilitators that emerged only from employees of refugeeserving organizations included education and assistance with Medicaid renewal, and access to employer-based services. System-related barriers included difficulty obtaining, maintaining, and renewing Medicaid; a lack of physicians and refugee-supporting organizations near Iraqi communities; limited specialist availability; limited resettlement agency assistance; lack of knowledge on how the US healthcare system works; poor interpretation services; and inadequate PTSD recognition and treatment. The system-related barriers to mental-health services emerged only from Iraqi parents. Interviewees identified only sociocultural mental-health related barriers. Socio-cultural facilitators included support from other refugees and higher educational attainment, and barriers included unfamiliarity with preventive care, misunderstandings about behavioral health, acculturative stresses, and stigma related to mentalhealth problems. Our model suggests that these core categories of facilitators and barriers capture the healthcareaccess determinants for Iraqi refugee children.
Discussion Parents of Iraqi children and employees of refugee-serving organizations identified barriers to healthcare, resources, and potential interventions to improve access to care for Iraqi refugee children. The findings reveal a mismatch between resource-availability and access barriers that persist beyond 8 months post-resettlement. Socio-cultural facilitators continue, whereas system-related facilitators are primarily resettlement agency-based and expire. Most persisting barriers are system-related. Although employees
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of refugee-serving organizations suggested that parents overcome many barriers after 8 months in the US, it is evident from parents that several barriers persist and may worsen after agency support ends. Parents described acculturation as overwhelming and difficult, stating that 8 months was inadequate time to adjust to the US healthcare system and way of life. Barriers related to language, acculturation, transportation, mental health, insurance, and accessing specialists persist beyond 8 months. These findings are consistent with studies of Iraqi adult refugees where language and acculturative stresses were barriers to healthcare access in the years following resettlement [23], and studies of Sudanese youth demonstrating associations between acculturation difficulties and PTSD [28, 29]. Participants suggest extending refugee-assistance services, teaching refugees to effectively navigate the US healthcare system, improving interpretation services, and increasing specialist availability as potential solutions. With ACA implementation, health insurance is expected to be available to more refugees. Refugee families with income \133 % of the federal poverty line (FPL) will be eligible for Medicaid, and refugees with income of 133–400 % of the FPL will be eligible for premium and cost-sharing tax credits when purchasing insurance through the exchanges [24]. This increase in availability of coverage will not, however, address all access barriers cited by study participants. Participants reported substantial difficulty in renewing and maintaining Medicaid. Upon expiration of RMA, refugees are individually responsible for reapplying for Medicaid. Studies of other adult refugees [23] and of Latinos [38] show that immigrant, minority, and refugee populations are at high risk for gaps in child coverage, attributable to unexpected loss of insurance, misinformation, and lengthy renewals. Our study findings indicate the need for effective policies to address not only eligibility, but also logistical challenges in maintaining insurance once case management ends. Potential strategies include allocating resources for refugee resettlement agencies to assist with insurance renewal beyond the expiration of case management services and providing education about children’s health and insurance through seminars, websites, and community outreach by healthcare providers and refugee assistance agencies. Refugees also are vulnerable to differences among states regarding TANF cutoffs and Medicaid expansion implementation. As of October 2013, twenty-five states had not decided to expand Medicaid coverage [39]; approximately 45 % of refugees were resettled in these states in 2010–2012 [40–42]. The resettlement of nearly half of refugees in the past 3 years in states opting out of Medicaid expansion suggests that access to insurance for refugees may not improve as expected with ACA implementation. This differential expansion of Medicaid presents additional
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transitional challenges for refugees and is an important consideration in decisions regarding where refugees are resettled. Parents in our study stated they were unsure how to navigate the complex healthcare system. One source of frustration was the lack of specialist accessibility and the lengthy referral process. Over half of refugee children are referred to subspecialists within 15 months following resettlement [43]. Parents in our study reported waiting months for specialist appointments and difficulties finding specialists. Sixty-six percent of children with public insurance are denied subspecialty appointments, versus 11 % with private insurance [44], and children with public insurance wait about 22 days longer for appointments [44]. There is a void in reported system-related facilitators addressing specialist availability. Increased family education about referrals and follow-up and increasing the number of subspecialists accepting Medicaid may benefit Iraqi refugees. As public insurance is expanded under the ACA, it is critical that disparities in access to specialists be examined and addressed. There is a high prevalence of PTSD in Iraqi children exposed to trauma and violence [17–22]. Iraqi refugee children in Egypt have presented with emotional and behavioral problems, such as bedwetting, separation anxiety, obsessive–compulsive anxiety, drug abuse, and conduct disorders following exposure to war, violence, and traumatic displacement [45]. Additionally, a study of Iraqi refugees in Egypt showed a relationship between the number of traumatic events witnessed and the number of mental-health symptoms reported [46]. Parents in our study identified system-related barriers to mental-health services, but did not report facilitators. Parents reported that mentalhealth screenings and PTSD treatment were inadequate or nonexistent, and it was difficult to find mental-health providers who accepted Medicaid. There are existing culturally-appropriate frameworks for mental-health interventions for Iraqi adult refugees and refugees with PTSD [47, 48]; examining the applicability of these frameworks to Iraqi refugee children may be useful. Sudanese refugee youth with PTSD reported seeking care from primary-care providers or school nurses rather than mental health counselors [29]. Incorporating mental health screening into routine health screening for refugees, using validated instruments such as the Refugee Health Screener15, may be beneficial [49]. Certain study limitations should be noted. Participants were from urban Texas, and results may not generalize to other states, suburban, or rural populations. In 2008, Texas had the sixth lowest income limit for TANF eligibility for a family of three [50] and will not expand Medicaid under the ACA [39]. Study findings may not generalize to Iraqi refugees in states with different
TANF and Medicaid eligibilities. Research was conducted with a moderator’s guide that was not subjected to reliability and validity testing. The sample size also was relatively small. Data analysis, however, showed adequate thematic repetition, indicating thematic saturation with the final sample size.
Conclusions Iraqi refugees identified provider availability, Medicaid maintenance and renewal, language, and inadequate recognition of PTSD as barriers to care for their children. Interviewees cited loss of case-management services as barriers. The potential expansion of insurance eligibility through ACA implementation is inadequate to address the multiple barriers faced by refugees in obtaining healthcare for their children. Strategies to improve access to care for Iraqi refugee children should include lengthening refugee assistance to two years; providing transportation, adequate interpretation services, and education about US healthcare and Medicaid; improving specialist availability; and Iraqi community outreach. Acknowledgment Dr. Shetgiri was supported by Grant Number K23HD068401 from the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NICHD or the National Institutes of Health. David Vermette was supported by the UT Southwestern Summer Medical Student Research Program. The authors have no financial relationships to disclose. Conflict of interest disclose.
The authors have no conflicts of interest to
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28. Geltman PL, et al. The ‘‘lost boys of Sudan’’: functional and behavioral health of unaccompanied refugee minors re-settled in the United States. Arch Pediatr Adolesc Med. 2005;159:585–91. 29. Geltman PL, et al. The ‘‘lost boys’’ of Sudan: use of health services and functional health outcomes of unaccompanied refugee minors resettled in the U.S. J Immigr Minor Health. 2008;10:389–96. 30. Kitzinger J. Qualitative research: introducing focus groups. BMJ. 1995;311:299–302. 31. Mays N, Pope C. Rigour and qualitative research. BMJ. 1995;311:109–12. 32. Barbour RS. Making sense of focus groups. Med Educ. 2005;39:742–50. 33. Berg BL. Qualitative research methods. Long Beach, CA: Pearson Education Inc; 2004. 34. Miles MB, Huberman AM. Qualitative data analysis. Newbury Park, CA: Sage; 1994. 35. Creswell J. Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage Publications; 1988. 36. Cohen DJ, Crabtree BF. Evaluative criteria for qualitative research in healthcare: controversies and recommendations. Ann Fam Med. 2008;6:331–9. 37. Draucker CB, et al. Theoretical sampling and category development in grounded theory. Qual Health Res. 2007;17:1137–48. 38. Flores G, et al. How Medicaid and the State Children’s Health Insurance Program can do a better job of insuring uninsured children: the perspectives of parents of uninsured Latino children. Ambul Pediatr. 2005;5:332–40. 39. The Henry J. Kaiser Family Foundation: Status of state action on the Medicaid expansion decision, as of October 22, 2013. http:// kff.org/health-reform/slide/current-status-of-the-medicaid-expan sion-decision/. Published October 22, 2013. Accessed 19 Nov 2013. 40. US Department of Health and Human Services: Office of Refugee Resettlement. Fiscal year 2010 refugee arrivals. Office of Refugee Resettlement: An Office of the Administration for Children & Families. http://www.acf.hhs.gov/programs/orr/resource/fiscalyear-2010-refugee-arrivals. Published July 18, 2013. Accessed 19 Nov 2013. 41. US Department of Health and Human Services: Office of Refugee Resettlement. Fiscal year 2011 refugee arrivals. Office of Refugee Resettlement: An Office of the Administration for Children & Families. http://www.acf.hhs.gov/programs/orr/resource/fiscalyear-2011-refugee-arrivals. Published July 18, 2012. Accessed 19 Nov 2013. 42. US Department of Health and Human Services: Office of Refugee Resettlement. Fiscal year 2012 refugee arrivals. Office of Refugee Resettlement: An Office of the Administration for Children & Families. http://www.acf.hhs.gov/programs/orr/resource/fiscalyear-2012-refugee-arrivals. Published January 24, 2013. Accessed 19 Nov 2013. 43. Watts DJ, et al. Health care utilization of refugee children after resettlement. J Immigr Minor Health. 2012;14:583–8. 44. Bisgaier J, Rhodes KV. Auditing access to specialty care for children with public insurance. N Engl J Med. 2011;364: 2324–33. 45. Al Obaidi AK. Iraqi psychiatrist in exile helping distressed Iraqi refugee children in Egypt in non-clinical settings. J Can Acad Child Adolesc Psychiatry. 2010;19:72–3. 46. Al Obaidi AK, Attalah SF. Iraqi refugees in Egypt: an exploration of their mental health and psychosocial status. Intervention. 2009;7:145–51. 47. Shoeb M, Weinstein H, Mollica R. The Harvard trauma questionnaire: adapting a cross-cultural instrument for measuring torture, trauma and posttraumatic stress disorder in Iraqi refugees. Int J Soc Psychiatry. 2007;53:447–63.
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ORIGINAL PAPER
Healthcare Access for Iraqi Refugee Children in Texas: Persistent Barriers, Potential Solutions, and Policy Implications David Vermette • Rashmi Shetgiri Haidar Al Zuheiri • Glenn Flores
•
Ó Springer Science+Business Media New York 2014
Abstract To identify access barriers to healthcare and potential interventions to improve access for Iraqi refugee children. Four focus groups were conducted using consecutive sampling of Iraqi refugee parents residing in the US for 8 months to 5 years. Eight key-informant interviews also were conducted with employees of organizations serving Iraqi refugee families, recruited using snowball sampling. Focus groups and interviews were audiotaped, transcribed, and analyzed using margin coding and grounded theory. Iraqi refugees identified provider availability, Medicaid maintenance and renewal, language issues, and inadequate recognition of post-traumatic stress disorder as barriers to care for their children. Interviewees cited loss of case-management services and difficulties in understanding the Medicaid renewal process as barriers. Potential interventions to improve access include community-oriented efforts to educate parents on Medicaid renewal, obtaining services, and accessing specialists. Given the enduring nature of language and Medicaid
D. Vermette (&) R. Shetgiri G. Flores Division of General Pediatrics, UT Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX 75390-9063, USA e-mail: [email protected] R. Shetgiri e-mail: [email protected] G. Flores e-mail: [email protected] D. Vermette R. Shetgiri G. Flores Division of General Pediatrics, Children’s Medical Center, Dallas, TX, USA H. Al Zuheiri Mosaic Family Services, Dallas, TX, USA e-mail: [email protected]
renewal barriers, policies addressing eligibility alone are insufficient. Keywords Iraq Refugee Child Barriers Access Affordable Care Act PTSD
Introduction Driven by war and protracted violence, over four million Iraqis have been displaced from their homes since 2003, with almost equal numbers either internally displaced or fleeing to neighboring countries [1–3]. Half of refugees fleeing Iraq are children [4]. Iraqis represent 22 % of US-resettled refugees in the past 5 years [5]. In 2008–2012, approximately 72,000 Iraqis were resettled in the US, including 8 % in Texas [5]. Approximately 75–80 % of Iraqis in Iraq are of Arab ethnicity and 15–20 % are Kurdish. Iraqis recently resettled in the US are predominately Arab [6]. Studies of Iraqi refugees in other countries have shown high rates of chronic disease, disability, and mental-health burden [7, 8]. Most Iraqi refugees have been exposed to trauma and violence, resulting in significant stresses [9], with the greatest impact on children [10]. Mental-health problems are increasingly prevalent among children and adolescents in cities across Iraq [11], and refugee children often arrive in the US with acute and chronic diseases [12], including infectious diseases, nutritional deficiencies [13–17], and high rates of post-traumatic stress disorder (PTSD) [18–22]. For 90 days following resettlement, refugees are supported by resettlement agencies and have caseworkers facilitating healthcare visits. Refugees receive governmental refugee cash assistance (RCA) and medical assistance (RMA) for eight months, thereby ensuring receipt of initial assistance to a group otherwise ineligible for
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J Immigrant Minority Health Table 1 Moderator’s guide for focus groups of parents of Iraqi refugee children and for interviews of employees of refugee-serving organizations, respectively Focus Groups (1) What obstacles have you faced in obtaining medical care for your child? Have transportation difficulties ever prevented you from bringing your child to the doctor? If yes, how so? If not, why not? Has your child ever been denied medical care? For what reason? Is your child uninsured? If yes, why? What have been the barriers to insuring your child? For the first 8 months after resettlement, there are services and cash assistance available to help provide access to healthcare for refugees. Have you noticed a difference in the accessibility of healthcare for your child after cash assistance has ended? If yes, how has it changed? Has your child had difficulty getting health care because he/she and/or you are refugees? Why or why not? Have differences in language or culture been a barrier in accessing healthcare? If yes, how? Has racism or anti-Islamic bias been a barrier to healthcare for your child? If yes, how? Many Iraqi refugees have experienced war and violence before being resettled in the U.S. Has your child experienced any mental-health issues in coping with the traumas endured before resettlement? If yes, what are they? If yes, have you experienced any barriers to accessing care for your child’s mental-health issues? If yes, what are they? (2) Who/what helps you get healthcare for your child now? Local organizations? Family members? Other refugees? If yes, how? If no, why not? (3) How could we make it easier for Iraqi refugees to access healthcare for their children? What would make it easier for you to take your child to the doctor? What suggestions do you have for improving healthcare for children? Interviews (1) What do you perceive to be the most important issues limiting refugees from accessing health services? Do you know any Iraqi refugees who needed to take their child to see a doctor but did not go? What were the reasons for not going? What did they do instead? What barriers do refugees face in accessing healthcare for their children once they are no longer being supported by a resettlement agency? Do you know Iraqi children that are uninsured? If yes, why? What are the challenges to getting them insured? Do language, communication, or acculturation issues affect access to healthcare for refugee children? If yes, how? Are racism or anti-Islamic bias barriers to care for Iraqi refugee children? If yes, how? Many Iraqi refugees have experienced a tremendous amount of war and violence before being resettled in the U.S. Do you know any Iraqi children who experienced mental-health issues in coping with the traumas endured before resettlement? If yes, what are they? Are there any cultural perceptions of mental-health issues that are a barrier to healthcare for Iraqi children? If yes, how? (2) How can we improve access to healthcare services for Iraqi refugee children? What would make it easier for Iraqi refugees to take their child to the doctor? What suggestions do you have for improving healthcare for refugee children?
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Temporary Assistance for Needy Families Program (TANF) and Medicaid. Healthcare utilization and accessibility diminish after the first year of resettlement [23]. The Patient Protection and Affordable Care Act (ACA) affords refugees the same insurance coverage options as US citizens, and is thereby expected to improve access to care [24, 25]. Barriers to healthcare among adult refugees include transportation, finances, and language [23, 26, 27]. Refugee Sudanese youth demonstrate high rates of healthcare utilization for mental health-related problems [28, 29]. There is inadequate information on barriers for refugee children, particularly Iraqis, after eight months post-resettlement. The aim of this study was to identify persistent barriers to healthcare access for Iraqi refugee children and potential solutions from the perspectives of parents and refugee service providers. The changing context of the US healthcare system and implementation of the ACA make this a crucial time to examine access to care for this vulnerable population.
Methods Study Design Four focus groups were conducted from June to August 2011 in Dallas, Texas, with parents of Iraqi refugee children, using a moderator’s guide of open-ended questions and probes (Table 1). Focus-group methodology was chosen because it provides insight into participants’ attitudes, experiences, knowledge, and motivations within their cultural context [30]. Parents were recruited using consecutive sampling [31, 32] in local Iraqi communities. Parents were eligible to participate if they were Iraqi refugees, had a child B17 years old, and had resided in the US for eight months to five years. Eight to ten participants were recruited per group [30]. Groups were conducted in Arabic or English, based on participant preference, and were 40–50 min in duration. Participants completed a sociodemographic questionnaire and received a $20 honorarium. Using a moderator’s guide, eight semi-structured interviews of employees from refugee-serving organizations working with Iraqi refugees were conducted (Table 1). Organizations included resettlement agencies, extended case-management organizations, schools, and refugee clinics. Interviewees were recruited by snowball sampling. Three questions and 14 probes were asked in each 40–45 min interview. A sociodemographic questionnaire was completed, and a $10 honorarium was provided. Informed consent was obtained from all participants. The moderator’s guides for focus groups and interviews were developed by three authors (D.V., R.S., and G.F.). The questions were derived from a review of the literature
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on access barriers to healthcare for refugees and the authors’ conceptual framework for barriers and facilitators to healthcare access. This study was approved by the UT Southwestern Medical Center IRB.
Table 2 Selected sociodemographic characteristics of focus group parents (N = 24) and interview participants (N = 8) Characteristic
Finding
Focus group participants
Analysis Focus groups were audiotaped and transcribed. The three Arabic groups were transcribed and translated into English by the third author (H.A.). The English group and interviews were transcribed by a professional transcriptionist and reviewed for accuracy by the first author (D.V). One interviewee declined to be audiotaped, and a transcript was produced from written interviewer notes. Transcript-based thematic analysis was conducted using grounded theory, in which new theory is synthesized from the data, and existing theories revised and modified as analysis progresses [33]. Three authors (D.V., R.S., and H.A.) independently analyzed the transcripts, to compare and contrast participants’ perspectives on barriers to and facilitators of healthcare access and to identify emerging conceptual domains. The authors reviewed transcripts and identified themes using an inductive, text-driven approach to thematic content analysis [34, 35]. Authors identified preliminary themes using open coding and constant comparative analysis, leading to theme consolidation and extraction, with subsequent iterative discussion and analysis by coding authors to organize and present the themes based in a conceptual framework [31, 36, 37]. Separate taxonomies were generated for focus groups and interviews. Because the primary aim of focus groups and semistructured interviews is to identify qualitative themes [30], frequencies and percentages for themes are not reported.
Results There were 24 participants in the four focus groups. The mean parental age was 37 years old; most were of Arab race/ethnicity, and 67 % of children had Medicaid (Table 2). The interviewees had a mean age of 41 years; 38 % were of Iraqi origin, and 50 % were former refugees (Table 2). Resources for Healthcare Access Resettlement Agency Participants (Tables 3 and 4) reported that resettlementagency assistance facilitated healthcare access within the first eight months. Case managers helped coordinate transportation and interpretation for appointments and
Mean parent age, years (± SD)
36.5 (± 7.5)
Female
71 %
Parents’ religious affiliation Muslim
96 %
Did not respond
4%
Parents’ race/ethnicity Arabic Kurdish Limited English proficiency
92 % 8% 71 %
Parents’ educational attainment (%)1 Did not complete high school
13 %
High-school diploma
21 %
Bachelor’s degree or higher
63 %
Did not respond
4%
Child’s health insurance (%)1 Medicaid
67 %
Private Insurance
13 %
Did not respond
21 %
Key-informant interview participants Mean participant age, years (± SD) Participants’ race/ethnicity2 White
1
41.3 (± 13.1) 75 %
African-American
13 %
Iraqi
38 %
Proportions sum to [100 % due to rounding
2
Proportions sum to [100 % due to identification in multiple categories
assisted with accessing specialists. Interviewees cited a wider breadth of resettlement-agency resources than parents, including Medicaid renewal assistance. Iraqi Refugees Interviewees reported that Iraqi refugees were resilient in adjusting to life in the US. They cited that Iraqis had higher educational backgrounds, more economic resources, higher likelihood of English proficiency, and more rapid acculturation than other refugees. Iraqi parents did not report these resources. Parents and interviewees reported that family and community members facilitate access to healthcare. Healthcare System Participants stated that hospitals offered Arabic interpretation, and Medicaid transportation was available for those
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J Immigrant Minority Health Table 3 Taxonomy of barriers and suggested interventions for access to care for Iraqi refugee children, as reported by their parents
without vehicles. Interviewees reported cultural competence among physicians.
Resources Resettlement agency resources
Barriers to Healthcare Access
Transportation Interpretation
Insurance-Related
Assistance finding specialists Iraqi refugee resources Family members that live in United States Support from other refugees Healthcare system resources Availability of interpretation services at public hospitals Medicaid transportation Barriers Insurance Medicaid renewal process lengthy and difficult Miscommunications between Medicaid office and parents Ineligibility for Medicaid Healthcare-provider related Long wait times for specialty appointments Limited number of providers who accept Medicaid Lack of physicians near areas where they live Inadequate access to dental services Lack of knowledge How to access specialists How to obtain, maintain, and renew Medicaid Healthcare resources for uninsured children Language Poor, inadequate, or nonexistent interpretation services Low health literacy Cultural barriers Acculturative stress Mental-health related
Many insurance-coverage barriers developed upon RMA expiration. The Medicaid renewal process was viewed as burdensome, resulting in periods where children were uninsured. Parents (Table 3) reported delays up to 5 months in Medicaid reactivation after completing renewal paperwork (Table 5). Interviewees stated that parents may not recognize the renewal letter in the mail (Table 4), and ‘‘often, the Medicaid reapplication letter goes into the trash.’’ Miscommunications arose between the Medicaid office and parents. An interviewee said, ‘‘sometimes the Medicaid card won’t come in the mail, and then the client may think that the child no longer has Medicaid’’ Parents and interviewees reported challenges in changing a child’s Medicaid primary-care physician (PCP). Case managers were unable to assist parents in changing the PCP. One interviewee said, ‘‘if we said something from the background like, ‘he needs to change the PCP,’ they were like, ‘Okay ma’am can you shut up? Because she’s not supposed to talk. It has to be the father’s decision.’’’ Participants reported that some children were uninsured, and others were ineligible for Medicaid. Interviewees stated that employer-based insurance was unaffordable (Table 4).
Inadequate recognition of post-traumatic stress disorder Difficulty finding psychologists that accept Medicaid
Healthcare-Provider Related
Culturally unacceptable to seek mental-health services Limitations of resettlement agency assistance Insufficient number of organizations Premature elimination of assistance Eight months not enough time to adjust to American healthcare system and life in US Loss of case manager as cultural conduit Prejudice Financial Financial burden of medical visits Must start from scratch when resettled Affected by differences in welfare systems between different states
Participants reported that the US healthcare system presented impediments to accessing care, emphasizing difficulties in navigating specialist referrals. Parents expressed frustration with long wait times for specialists, limited numbers of physicians accepting Medicaid, and scarcity of providers near their community. Interviewees reported that parents experienced long wait times for appointments, were inadequately informed about clinic location changes, and felt rushed and unable to ask questions using interpreters during appointments.
Suggested interventions Extend refugee services to at least 2 years
Lack of Knowledge
Provide adequate medical interpretation Educate refugees about Medicaid and US healthcare system Provide transportation Assign to doctor with similar cultural background Shorten subspecialty referral process Increase availability of specialists Increase number of caseworkers at refugee-assistance agencies
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Some parents were unable to find treatment for their children’s serious illnesses due to lack of knowledge about accessing specialists. There was parental confusion about obtaining, renewing, and maintaining Medicaid. Parents did not understand procedures for choosing a PCP. One interviewee observed, ‘‘If the parents do not
J Immigrant Minority Health Table 4 Taxonomy of barriers and suggested interventions for access to care for Iraqi refugee children, as reported by employees of Refugee-Serving Organizations Resources Resettlement agency resources
Table 4 continued Difficulty discussing mental-health issues with sensitivity when using interpreter Resettlement agency case management ends at 8 months Suggested interventions
Education on public transportation
Extend refugee services to 2 years
Interpretation
Teach refugees how to navigate US healthcare system
Coordination of care
Educate providers and public about Iraqi refugees and reasons for resettlement
Education and assistance with Medicaid renewal Iraqi refugee resources Higher education level, English-language skills, and economic background compared with other refugees Obtain jobs and have access to employer-based insurance quickly Acculturate quickly Healthcare system resources Arabic interpreters readily available on language lines
Make language interpretation more affordable for providers Provide all health-education and clinic-related information in Arabic Train community members to be medical interpreters Websites with health and healthcare system information written in Arabic Outreach by providers to Iraqi communities and resettlement agencies
Cultural competence among providers Barriers Insurance Difficulty obtaining, maintaining, and renewing Medicaid Refugee medical assistance (RMA) expires at 8 months Difficulty changing primary-care physician through Medicaid Unable to afford insurance Healthcare-provider related Long wait times for appointments Referral system difficult to navigate Parents feel rushed and unable to ask questions when using interpreter Lack of provider knowledge about refugees Lack of knowledge How to access specialists
choose, Medicaid or CHIP will choose for them. The refugee is not aware this happened, and they will take their child to the wrong place.’’ Additionally, some parents were unfamiliar with the distinction between a generalist and specialist, saying, ‘‘understanding that just one general doctor does not resolve all your problems, that’s the issue.’’ Interviewees reported that Iraqi parents did not know how US healthcare works. They noted that parents were often unaware of services available to children, how to obtain services and follow-up appointments, and the process of obtaining employer-based insurance. Language
How US healthcare system works How to identify and obtain healthcare services Availability of language lines at practices How to access employer-based insurance benefits Language Poor or inadequate interpretation services leading to miscommunication and poor health consequences Health-education and clinic-related information not given in Arabic Low health literacy Cultural barriers Acculturative stress Patriarchal family structure Unfamiliar with concept of preventative care Expectations differ from reality of how US healthcare system works Mental-health related Stigma attached to mental-health problems, leading to decreased utilization of services Misunderstandings concerning behavioral health diagnosis and treatment
Limited English-proficiency (LEP) mothers usually took children to appointments, leading to communication difficulties. Language barriers were magnified by inadequate interpretation services. Parents reported that language lines often utilized interpreters who spoke a different Arabic dialect from Iraqis, making the interpreters difficult to understand. Some small clinics were reluctant to provide interpretation. Resettlement agencies, and consequently parents, were sometimes unaware of legal requirements for interpretation. Parents often relied on community members or children to interpret, but as one interviewee described, ‘‘sometimes they (the child) can’t explain the problem correctly.’’ Health education and clinic-related materials also were not provided in Arabic. Cultural Barriers Interviewees cited acculturative stress and patriarchal family structure as impediments to healthcare access for Iraqi children. One interviewee said, ‘‘they are trying to
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J Immigrant Minority Health Table 5 Focus-Group Quotes on selected key issues by parents of iraqi refugee children Barriers Insurance-related ‘‘I don’t know what is the reason that my daughter doesn’t have Medicaid at the current time, and since two months she is without Medicaid, and she is a child, and why the Medicaid stopped. We filled application for Medicaid two times. First time they asked us to fill it again, and second time before one week we sent another application, and there is no replay or interview appointment or any thing from Medicaid office yet’’ Healthcare-provider related ‘‘My son suffering from mental problem due to attack that we had in Iraq by armed gang, and when I tried to find a psychologist for my son, all of them don’t accept Medicaid’’ Lack of knowledge on accessing specialists ‘‘My child has a heart problem, and when she gets sick, I don’t know where to take her, and even when I call a doctor, they said, ‘you should take her somewhere else.’’’ Mental health-related ‘‘I received a call from the school for my kid. (The teacher) said, ‘Your son, when he gets mad at the kids, he pulls a visual rifle and he starts shooting at his teacher, at the kids.’ An imaginary rifle. I told her, ‘My son moved from Baghdad, Iraq. Every time he opens the door, he see a humvee, American soldiers are on it having a rifle in each hand. For reason or without, soldiers or Iraqi soldiers, they would pull the gun and they would shoot at any sort of traps. That’s something that was his daily life. He goes to the store, to the market, to the school and he see humvees, tanks, with people with guns in their hands, once they see a threat, pull the gun, pop pop pop, and they cap somebody. So it’s a normal behavior to him’’ ‘‘Culturally, it is kind of unacceptable for a person because of the pride issue. People are too proud to admit that they have a mental issue that they need help for’’ Increase in barriers when resettlement agency support ends ‘‘Case manager play the role of a cultural conduit between the families and the doctors, the families and the medical facilities, and he break down things and he make it easier to understand for both parties. When this cultural conduit is gone, they’re by their own. And for months they were dependent on the case manager’’ Increase in barriers when resettlement agency support ends: ‘‘It takes two years to understand this situation over here, that’s the bigger problem; what you gave us for eight months is not enough for us, because the system has been changed and so difficult to understand’’ Financial ‘‘People that moved from the country of our origin, they used to get access to the medical facilities within a month, within a week, and sometimes they even don’t have to pay money for it. They pay only pennies, some change. But when they move here, it’s huge amounts of money. I mean, massive numbers, $300,000 for a certain operation. Well, he’s a refugee, how would he get that money? Where would he get it from? ‘‘
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Table 5 continued Prejudice ‘‘Some places and doctors offices or clinics, once they see woman with scarf, they get revulsion, and you can see the way how they treat the others is normal and nice, but with woman with scarf, is different’’ Suggested interventions Extend refugee services to at least 2 years ‘‘They need to give people break when they move here, at least for a few years, like Maine does. Five years is perfect. But they need to adapt and overcome the obstacles before you deny them health services. So they need to increase the time’’
learn and to improve, because they are beginning from zero. Everything is new for them, new life, new system.’’ Interviewees observed that parents were unfamiliar with preventative care and would delay taking a well-child to the doctor (Table 6). Parents reported acculturative stress as the only cultural barrier. Mental-Health Related Parents explained that children were exposed to extreme violence in Iraq prior to resettlement, and PTSD was inadequately recognized. One father said, ‘‘Two times I get shot, carried home full of bullets. My son would be looking at me like, ‘Hey, what’s wrong?’ It’s a daily thing for kids there to see car bombs. Kids in the market with their mothers, boom. Someone got killed and thrown in a trash pile right by their house, and there are kids five, six years old. It’s their daily life.’’ Another father observed, ‘‘some people cannot really know if their kid has PTSD because they suffer it themselves.’’ Parents expressed frustration that there was no PTSD screening upon resettlement, and some parents felt that doctors responded inadequately to their child’s PTSD symptoms. Parents also had difficulty finding psychologists that accept Medicaid. Some parents admitted they had not sought mental-health services for their children because it was culturally unacceptable. Interviewees stated that Iraqis stigmatize mental health problems, leading to decreased service utilization. One interviewee said, ‘‘they think that the family is best equipped to deal with a trauma, instead of a psychiatrist. Even the adults are not very comfortable talking if they have been, for example, survivors of torture.’’ Other mental-health related barriers cited by interviewees include misunderstandings concerning behavioral health diagnoses and treatments, reduction in funding for schools’ refugee counseling programs, and difficulty discussing sensitive mental-health issues when using interpreters.
J Immigrant Minority Health Table 6 Key-informant interview quotes by employees of RefugeeServing Organizations on selected key issues Barriers Insurance ‘‘They’ll come to [Organization] every day saying, ‘I went to the local office every day this week, and they kept telling me to come back with this paper, but I already brought it in.’ I would say that from my experience, if a child is uninsured, it’s not for lack of trying for the parents’’ ‘‘If they aren’t insured, the clinic’s going to often refuse to see the child, and then it takes often 30–45 days to process the case if you’re lucky, and you’re going every day. But during that time, you’re not going to the doctor, and if you need to go to the doctor, your options are often the emergency room’’ Language barrier ‘‘I had an Iraqi client who was receiving interpretation over the phone, and she wanted to ask a question regarding her health, and the interpreter over the phone told her, ‘Don’t ask that. You don’t need to be asking that.’ Essentially it could feel like you don’t have a voice, that you don’t have the ability to say what you want to say and to communicate to the extent that you want to communicate, and it’s incredibly unfair’’ ‘‘When you go to the ER, they give you a paper with the diagnoses and information on that disorder. That never happens in Arabic’’
Table 6 continued ‘‘Having healthcare providers come and talk to them and really say, ‘Hey, you know, I’m a doctor. I’m not this mythical figure out here. I’m someone you can talk to. I can explain a little bit about what’s going on. Do you have some questions?’’’ Location/Method: provide all health-education and clinic-related information in Arabic ‘‘Having someone that’s going to make the effort to recognize, ‘This child hasn’t been to their checkup, maybe we should call them with an Arabic interpreter and find out that maybe they just missed an appointment and didn’t know how to reschedule.’ Or, if you do discontinue accepting a certain type of Medicaid, maybe having someone that’s going to contact the client with an Arabic interpreter to explain to them, ‘We’re no longer accepting your Medicaid, but this is a physician that does accept your Medicaid, and this is their information’’ ‘‘Iraqis love information in their language, so whatever providers want to communicate, Iraqis would love it in Arabic. There could be translated materials on where to access health services and how to access’’
Limitations of Resettlement Agency Assistance
Cultural barriers ‘‘Even if the child is not sick, the child requires a well checkup. When you go in and do intake, you’re telling them, ‘Okay, I’m going to fix an appointment to see this doctor’ and they’ll ask, ‘Why? My child is not sick’’’ ‘‘They believe they cannot be on their own to go to see a doctor. They have to be under control by the husband, by the relatives’’ Mental-health related ‘‘When a child goes to school, and maybe they’re diagnosed with ADHD, and they’re required to be on behavioral health, or maybe they are given the medication, I have seen that resistance to that. And I’m having a feeling that the parent really did not understand what the diagnosis was and what’s the reason for treatment using medication. That resistance has made that case go over to CPS’’ Mental-health related ‘‘Mental health issues are a kind of family shame. They would rather hide the problem than seek help’’ Prejudice ‘‘I know from experience that, oftentimes, staff here in this building view Iraqis as aggressive and somewhat impolite, especially when, usually, their point of reference is the Hispanic population, who tend to be less aggressive’’
Parents reported that there are insufficient organizations to adequately support resettled refugees. Some parents reported that they were offered less assistance when the resettlement agencies discovered they were proficient in English or had resettled family members. Participants reported that barriers to healthcare access increase greatly once resettlement agency case management expires, specifically citing transportation, language, and insurance-renewal challenges. Parents expressed concern that 8 months is inadequate to adjust to the healthcare system and life in the US. Financial Parents reported that the financial burden of medical visits prevented them from taking their child to the doctor, stating that when they are resettled, they must start from scratch financially, academically, and professionally. Parents also expressed frustration with what they perceived as a ‘no money, no care’ structure of the US healthcare system, describing it as a business rather than a humanitarian service.
Suggested interventions Education of general public/providers ‘‘Overall, their lives would be much easier if we just educated the general public that these are people that helped us. They’re not over here because they want to do something to us. It’s because they helped us over there. So, that’s why they had to leave. I think a lot of people just don’t realize that’’ Location/Method: outreach by providers to Iraqi communities and resettlement agencies
Suggested Interventions Participants suggested refugee assistance should be extended to two years to give families time to acculturate and understand the healthcare system. Parents suggested that interpretation services employ Arabic interpreters who speak the Iraqi dialect, clinics provide Arabic health education materials, and private clinics provide interpreters.
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Interviewees suggested that providers create an Arabic website containing health and healthcare system information, and clinics provide Arabic written materials. Interviewees recommended educational programs for refugee parents providing information on scheduling, attending, and following-up after appointments; completion of Medicaid paperwork; and how the healthcare system works. Parents expressed a desire to understand Medicaid and the US healthcare system. Interviewees suggested increased public and provider education on who Iraqi refugees are and why they are resettled in the US, and outreach by providers to Iraqi communities and resettlement agencies. Framework of Facilitators and Barriers We collapsed the themes that emerged into two overarching categories supporting our theoretical framework of healthcare access for Iraqi refugee children: System-related and Socio-cultural. The system-related facilitators included resettlement-agency support and Medicaid transportation. Facilitators that emerged only from employees of refugeeserving organizations included education and assistance with Medicaid renewal, and access to employer-based services. System-related barriers included difficulty obtaining, maintaining, and renewing Medicaid; a lack of physicians and refugee-supporting organizations near Iraqi communities; limited specialist availability; limited resettlement agency assistance; lack of knowledge on how the US healthcare system works; poor interpretation services; and inadequate PTSD recognition and treatment. The system-related barriers to mental-health services emerged only from Iraqi parents. Interviewees identified only sociocultural mental-health related barriers. Socio-cultural facilitators included support from other refugees and higher educational attainment, and barriers included unfamiliarity with preventive care, misunderstandings about behavioral health, acculturative stresses, and stigma related to mentalhealth problems. Our model suggests that these core categories of facilitators and barriers capture the healthcareaccess determinants for Iraqi refugee children.
Discussion Parents of Iraqi children and employees of refugee-serving organizations identified barriers to healthcare, resources, and potential interventions to improve access to care for Iraqi refugee children. The findings reveal a mismatch between resource-availability and access barriers that persist beyond 8 months post-resettlement. Socio-cultural facilitators continue, whereas system-related facilitators are primarily resettlement agency-based and expire. Most persisting barriers are system-related. Although employees
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of refugee-serving organizations suggested that parents overcome many barriers after 8 months in the US, it is evident from parents that several barriers persist and may worsen after agency support ends. Parents described acculturation as overwhelming and difficult, stating that 8 months was inadequate time to adjust to the US healthcare system and way of life. Barriers related to language, acculturation, transportation, mental health, insurance, and accessing specialists persist beyond 8 months. These findings are consistent with studies of Iraqi adult refugees where language and acculturative stresses were barriers to healthcare access in the years following resettlement [23], and studies of Sudanese youth demonstrating associations between acculturation difficulties and PTSD [28, 29]. Participants suggest extending refugee-assistance services, teaching refugees to effectively navigate the US healthcare system, improving interpretation services, and increasing specialist availability as potential solutions. With ACA implementation, health insurance is expected to be available to more refugees. Refugee families with income \133 % of the federal poverty line (FPL) will be eligible for Medicaid, and refugees with income of 133–400 % of the FPL will be eligible for premium and cost-sharing tax credits when purchasing insurance through the exchanges [24]. This increase in availability of coverage will not, however, address all access barriers cited by study participants. Participants reported substantial difficulty in renewing and maintaining Medicaid. Upon expiration of RMA, refugees are individually responsible for reapplying for Medicaid. Studies of other adult refugees [23] and of Latinos [38] show that immigrant, minority, and refugee populations are at high risk for gaps in child coverage, attributable to unexpected loss of insurance, misinformation, and lengthy renewals. Our study findings indicate the need for effective policies to address not only eligibility, but also logistical challenges in maintaining insurance once case management ends. Potential strategies include allocating resources for refugee resettlement agencies to assist with insurance renewal beyond the expiration of case management services and providing education about children’s health and insurance through seminars, websites, and community outreach by healthcare providers and refugee assistance agencies. Refugees also are vulnerable to differences among states regarding TANF cutoffs and Medicaid expansion implementation. As of October 2013, twenty-five states had not decided to expand Medicaid coverage [39]; approximately 45 % of refugees were resettled in these states in 2010–2012 [40–42]. The resettlement of nearly half of refugees in the past 3 years in states opting out of Medicaid expansion suggests that access to insurance for refugees may not improve as expected with ACA implementation. This differential expansion of Medicaid presents additional
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transitional challenges for refugees and is an important consideration in decisions regarding where refugees are resettled. Parents in our study stated they were unsure how to navigate the complex healthcare system. One source of frustration was the lack of specialist accessibility and the lengthy referral process. Over half of refugee children are referred to subspecialists within 15 months following resettlement [43]. Parents in our study reported waiting months for specialist appointments and difficulties finding specialists. Sixty-six percent of children with public insurance are denied subspecialty appointments, versus 11 % with private insurance [44], and children with public insurance wait about 22 days longer for appointments [44]. There is a void in reported system-related facilitators addressing specialist availability. Increased family education about referrals and follow-up and increasing the number of subspecialists accepting Medicaid may benefit Iraqi refugees. As public insurance is expanded under the ACA, it is critical that disparities in access to specialists be examined and addressed. There is a high prevalence of PTSD in Iraqi children exposed to trauma and violence [17–22]. Iraqi refugee children in Egypt have presented with emotional and behavioral problems, such as bedwetting, separation anxiety, obsessive–compulsive anxiety, drug abuse, and conduct disorders following exposure to war, violence, and traumatic displacement [45]. Additionally, a study of Iraqi refugees in Egypt showed a relationship between the number of traumatic events witnessed and the number of mental-health symptoms reported [46]. Parents in our study identified system-related barriers to mental-health services, but did not report facilitators. Parents reported that mentalhealth screenings and PTSD treatment were inadequate or nonexistent, and it was difficult to find mental-health providers who accepted Medicaid. There are existing culturally-appropriate frameworks for mental-health interventions for Iraqi adult refugees and refugees with PTSD [47, 48]; examining the applicability of these frameworks to Iraqi refugee children may be useful. Sudanese refugee youth with PTSD reported seeking care from primary-care providers or school nurses rather than mental health counselors [29]. Incorporating mental health screening into routine health screening for refugees, using validated instruments such as the Refugee Health Screener15, may be beneficial [49]. Certain study limitations should be noted. Participants were from urban Texas, and results may not generalize to other states, suburban, or rural populations. In 2008, Texas had the sixth lowest income limit for TANF eligibility for a family of three [50] and will not expand Medicaid under the ACA [39]. Study findings may not generalize to Iraqi refugees in states with different
TANF and Medicaid eligibilities. Research was conducted with a moderator’s guide that was not subjected to reliability and validity testing. The sample size also was relatively small. Data analysis, however, showed adequate thematic repetition, indicating thematic saturation with the final sample size.
Conclusions Iraqi refugees identified provider availability, Medicaid maintenance and renewal, language, and inadequate recognition of PTSD as barriers to care for their children. Interviewees cited loss of case-management services as barriers. The potential expansion of insurance eligibility through ACA implementation is inadequate to address the multiple barriers faced by refugees in obtaining healthcare for their children. Strategies to improve access to care for Iraqi refugee children should include lengthening refugee assistance to two years; providing transportation, adequate interpretation services, and education about US healthcare and Medicaid; improving specialist availability; and Iraqi community outreach. Acknowledgment Dr. Shetgiri was supported by Grant Number K23HD068401 from the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NICHD or the National Institutes of Health. David Vermette was supported by the UT Southwestern Summer Medical Student Research Program. The authors have no financial relationships to disclose. Conflict of interest disclose.
The authors have no conflicts of interest to
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