Abstract
Research suggests that preventive healthcare needs are high among U.S. refugees from Myanmar; yet no studies have examined healthcare patterns among U.S. Rohingya refugees. We examined participation in preventive cancer screening, healthcare access barriers, and facilitators in a community-based sample of 308 Rohingya refugees in Chicago, Illinois. Descriptives were conducted for the participation rates to preventive cancer screenings, indicated by age and gender. Chi-square tests were used to examine gender differences in barriers and facilitators in healthcare. Participants reported low participation in preventive screenings (e.g. 89.2% never received a Papanicolaou (pap) test). Healthcare access barriers were observed: 82.8% uninsured, 81.2% not knowing where to go for healthcare needs, and 55.1% needed interpretation, with men less likely to have had a doctor’s visit in the past year or a regular provider. Findings highlight the urgent need to further develop or tailor interventions to address the healthcare needs for resettled Rohingya refugees.
Keywords
Refugees from Myanmar (formerly, Burma) represented the largest proportion of refugees resettled in the U.S. in the last decade, 2011–2021 (Refugee Processing Center, 2022). Included among Burmese refugees resettled in the U.S. are the Rohingya, an ethnic group Indigenous to the Rakhine (Arakan) state of Myanmar. Despite their Indigeneity and long history in Myanmar, Rohingya remain stateless and are deemed “unnaturalized” per the 1982 Citizenship Law. Discriminatory policies and human rights violations stripped them of several of their basic human rights, including the right to vote, access to basic services, and the ability to practice their Islamic faith. As a result of intense persecution and ethnic violence, many Rohingya have been forced to flee to neighboring countries, with nearly one million after a wave of violence in August 2017 (UN Refugees, 2021). Thousands have been permanently resettled as refugees in various countries, including the U.S.
Refugees are particularly vulnerable to health disparities. Several studies have found that refugees are less likely than the general population to receive preventative cancer screenings like mammogram or Papanicolaou (pap) smears (Bhargava et al., 2018; Lobo et al., 2022; Møen et al., 2017). Low-paid work, limited English proficiency, poor insurance coverage, and higher levels of stress are common experiences among immigrants and refugees, making access to health services more difficult (Feinberg et al., 2021). Although health disparities are often framed as individual-level barriers, health behaviors, including the use of healthcare services, are also influenced by other socioecological factors, including the healthcare system. In a qualitative study of Burmese refugees in the U.S. (majority ethnic Karen, Karenni, and Chin), participants described structural barriers to healthcare access, such as the employer-based insurance model and poor access to linguistically accessible healthcare services (Kumar, 2021). Another qualitative study, focusing on leaders of Burmese and Karen refugee communities, described other healthcare challenges, such as understanding how to make appointments, navigate complex health systems, and difficulty completing medical documents (Yalim et al., 2019). Additionally, the higher poverty rates among the Burmese population within the U.S. makes them particularly vulnerable to health disparities.
Although preventive health has been found to be a crucial area of need for other Burmese refugees, no studies have been published on the experience of the Rohingya community within the U.S. healthcare system. To address this gap, this study took an exploratory approach to examine participation in preventive cancer screenings, as well as healthcare access barriers and facilitators among a community-based sample of Rohingya refugees in Chicago, Illinois—one of the largest concentrations of Rohingya in the U.S. (approximately 1500). Past studies (Shafeek Amin and Driver, 2022) have found important differences within healthcare utilization between immigrant men and women, thus, we examined gender differences among participants.
Method
Context of study
We conducted an exploratory, cross-sectional quantitative study to understand the health needs of the growing Rohingya community in Chicago. In Fall 2016, a community-academic partnership began between the last author and the Rohingya Culture Center (RCC), led by the third author; the partnership focused on relationship building, capacity building, and informal data gathering and formal research. The last author led a pilot needs assessment consisting of in-depth interviews and focus groups with 10 adult community members, a youth focus group with six participants aged 14–17, and semi-structured interviews with six service providers in the community, including healthcare professionals conducted in 2017. From this needs assessment, the need for increased health literacy and the need for regular healthcare so that community members do not delay care until more serious health problems arise were identified. To gather community-wide data, the last author designed and led the current study, with the RCC’s leadership having final say on the survey questions included. The survey was piloted with 10 community members, and data were collected from September to December 2019. Due to very low literacy within the community (both in their native languages and in English), informed consent and survey participation were administered verbally in Rohingya or Burmese by a linguistically matched research team member who also identified as Rohingya and recorded into Qualtrics by study staff. This research was approved by DePaul University’s Institutional Review Board. More information on the community-academic partnership can be found in Saw et al. (2022).
Participants
Participants were randomly ordered and selected from a database of Rohingya in Chicago maintained by the RCC. Potential participants were contacted via the phone by a Rohingya-/Burmese-speaking research staff from a community member database and screened for eligibility (i.e. at least age 18 and self-identify as Rohingya). Participants (N = 308; Mage = 37 years-old; 48.0% women) predominantly born in Myanmar (87.1%), married (75.6%), and had elementary (39.3%) or no formal education (53.3%). Most had obtained permanent residency (76.0%) and had been in the U.S. for 5 years or less (84.8%).
Measures
Demographic questions included age, gender, country of birth, marital status, and education. Depending on the gender and age of the participants, select questions about their participation in preventative cancer screenings (0 = never to 4 = last 12 months). Women who met the applicable age criteria were asked about their last pap smear, mammogram, clinical breast exam, and colonoscopy, while men who met the applicable age criteria were asked about their last colonoscopy and prostate exam. To assess the extent to which the respondents faced any healthcare barriers or were being supported by healthcare facilitators, participants were asked if they had insurance, visited a doctor within the last 12 months, had a regular provider, if they knew where to go for healthcare services, if they needed interpretation during healthcare services, and if they usually had interpretation available (if identified that they regularly needed healthcare services).
Health literacy was assessed using a 3-item scale where participants indicated how often they have issues understanding a healthcare provider, need assistance reading hospital materials, and have difficulty learning about their health due to not understanding written information (1 = Always to 5 = Never). A sample item includes, “How often do you have someone help you read hospital materials?” A health literacy mean score was calculated; higher scores indicated greater health literacy. The scale had good internal reliability (α = 0.906).
Analysis
As this was an exploratory study, the analyses were mainly descriptive. Participants had the option to skip questions; therefore, not all questions were answered by each participant. Chi-square tests of independence were conducted to assess differences between men and women in barriers and facilitators of healthcare access. Analyses were conducted in IBM SPSS (27.0.1.0).
Results
As seen in Table 1, the majority of indicated participants have never received any of the preventative cancer screenings surveyed. Table 2 illustrates the barriers and facilitators for healthcare access. Most participants did not have medical insurance (82.8%) but did have a regular healthcare provider or health clinic (60.9%). However, most did not know where to go for broader healthcare services (81.2%). A majority stated needing interpretation (55.1%), and among those who endorsed needing an interpreter, most (87.7%) usually did not have one. Women were more likely than men to have visited a doctor within the last 12 months, X2(1, 281) = 15.456, p = 0.001, and have a regular provider, X2(1, 281) = 11.853, p ≤ 0.001. There were no significant gender differences in having medical insurance, knowing where to go for broader healthcare services, needing an interpreter, or having an interpreter if needed. Participants also indicated low levels of health literacy (M = 2.22, SD = 1.06).
Participation in preventative cancer screenings.
Indicated participants for each exam varied based on age and gender.
n does not include missing values as follows: PAP smear (n = 20; 15.3%); Mammogram (n = 8; 18.2%); Clinical breast exam (n = 5; 14.3%); Colonoscopy (n = 2; 4.5%); Prostate (n = 2; 8.0%).
Healthcare access barriers and facilitators—overall and by gender.
n does not include missing values as follows: Insured (n = 116; 37.7%); Doctor’s visit within last 12 months (n = 29; 9.4%); Regular provider (n = 27; 8.3%); Know where to go for healthcare services (n = 31; 10.1%); Need interpretation (n = 61; 19.8%); Have interpretation if needed it (n = 0).
p < 0.01.
Discussion
As the majority of the Rohingya community are relatively recent arrivals to the U.S. understanding how community members are accessing healthcare is critical. This study is the first to provide an overview of the healthcare access of the Chicago Rohingya community—one of the largest concentrations in the U.S.—by describing participation in preventative cancer screenings and potential healthcare barriers. The low participation in preventative screenings demonstrates an area of immediate attention, as participation was comparatively lower than for other refugee groups (Bhargava et al., 2018; Lobo et al., 2022; Møen et al., 2017). Study findings also accentuate healthcare access barriers (e.g. health insurance access, translation, health literacy) for the Rohingya community, which point to areas of potential intervention by community organizations and policymakers. Lastly, gender differences in having visited a doctor within the last 12 months and having a regular provider is supported by past studies which have found that immigrant women, in general, tend to utilize healthcare services more than men (Shafeek Amin and Driver, 2022).
There are important study limitations to note. Study recruitment relied on a database maintained by our organizational partners of Rohingya living in Chicago, which limits the study’s generalizability. Additionally, our participants were fairly homogenous, likely due to 86% of the community having arrived within the last 5 years. Chicago as the site for data collection is unique due to the larger number of support services for refugees, the Rohingya community, and immigrants broadly. Rohingya living in other locales will likely have different health needs and community resources. As this was a cross-sectional study, we cannot ascertain causal mechanisms. Moreover, as healthcare and immigration policies shift, the needs and resources of the Rohingya community in Chicago, may have also shifted. Therefore, results should be considered with this in mind. Finally, although we engaged with our organizational partner on the design and implementation of the current study, piloted the study measures with community members before data collection, and the health literacy measure used had high internal consistency, the measures were nonetheless based on US health and healthcare concepts and were not validated specifically for this community.
Future research should examine socioecological factors that facilitate and impede the uptake of preventive health behaviors, as well as develop or tailor interventions to meet the cultural, linguistic, and other needs of this population. Longitudinal study designs can help identify causal factors of health literacy, healthcare access, and preventive health behaviors, including shifts in health outcomes due to changes in the community and systemic factors, such as healthcare policy changes. For example, it is highly possible that members of the Rohingya community were aided by the 2022 expansion of Refugee Cash Assistance and Refugee Medical Assistance programs by the U.S. Department of Health and Human Services Administration for Children and Families (U.S. Department of Health and Human Services, 2022).
Training of Rohingya-speaking lay health workers may be an initial step to help community members access low-cost health insurance options and access preventative health services. The lay health worker model is widely used for immigrants and refugees to help broker health services after arrival (Torres et al., 2013). This study also points to necessary policy changes to ensure that the Rohingya and other newly arrived refugee communities receive information and access to timely and appropriate healthcare, particularly care that can prevent morbidity and mortality downstream (Sharma et al., 2020). In addition to increased funding for lay health workers from the community, other healthcare policy reforms, such as a further expansion of the Refugee Medical Assistance eligibility period beyond the current 12 months, could improve healthcare access for Rohingya and other newly resettled refugees.
Conclusion
This exploratory study is the first to provide a snapshot of the health care status of the U.S. Rohingya community by describing participation in preventative cancer screenings and potential healthcare barriers. Findings highlight low participation in preventative screenings and significant barriers to healthcare access. Future research and interventions to address these extensive needs should consider the socioecological factors that may facilitate healthcare access for the Rohingya community, such as training Rohingya-speaking lay health workers along with policy to ensure that the Rohingya, and other newly arrived refugee communities, receive information and access to timely and appropriate healthcare.
Footnotes
Acknowledgements
We gratefully acknowledge the support of the Rohingya Culture Center, including Mr. Abdul Jabbar Amanullah, Ms. Rehana Ahmad, and Mr. Faisal Ahmad.
Author contributions
Each author contributed substantively to this manuscript: Wendy de los Reyes contributed to conceptualization, methodology, software, formal analyses, data curation, writing (original draft, review, and editing), and visualization. Sarah Farhan contributed to formal analyses, data curation, and writing (original draft, review, and editing). Nasir bin Zakaria contributed to investigation, resources, project administration, and writing-review. Anne Saw contributed to conceptualization, investigation, resources, writing (review and editing), supervision, project administration, funding acquisition.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the DePaul University Irwin W. Steans Center for Community-Based Service Learning & Community Service Studies as a Community-Based Research Faculty Fellowship to the last author.
Ethics approval
This research was approved by DePaul University’s Institutional Review Board (#AS062419PSY-R2).
Informed consent
Due to very low literacy within the community (both in their native languages and in English), informed consent was administered verbally in Rohingya or Burmese by a linguistically matched research team member who also identified as Rohingya.
