refugee health research

Chronic health conditions, physical activity and dietary behaviors of Bhutanese refugees: a Houston-based needs assessment. 2003;27(3):185206. Additionally, low literacy (including health literacy) levels in some refugees can result in communication barriers and low understanding or misinterpretation of the investigation process [6, 9]. 2018;161:839. A majority of the investigations in our analysis ensured a private location for data collection, with some investigations only collecting de-identified data or choosing individual interviews over focus groups (although held in private locations, the latter are not truly private) [7, 38]. Cambridge: Cambridge University Press; 2018. p. 6878. An ethics framework for public health. Hagaman AK, Sivilli TI, Ao T, Blanton C, Ellis H, Lopes Cardozo B, et al. For instance, many government agencies and nongovernmental organizations collect program data intended for internal use that are later used by investigators. CAS Although relatively limited in scope, our analysis provided an opportunity to describe the application of research ethics principles in refugee settings cited within recently published articles. Tohme J, Egan JE, Stall R, Wagner G, Mokhbat J. HIV prevalence and demographic determinants of unprotected anal sex and HIV testing among male refugees who have sex with men in Beirut, Lebanon. Refugee investigations are needed. From complicity to advocacy: the necessity of refugee research. Improving access to mental health services for racialized immigrants, refugees, and non-status people living with HIV/AIDS. Search terms were kept broad to increase the likelihood of identifying relevant publications. Ethical challenges in mental health research among internally displaced people: ethical theory and research implementation. Overall, we found that ethics information is not always systematically reported in current published literature reporting on investigations involving refugees. Finally, 19% (n=55) of the articles stated that data were stored without identifiers, and many others indicated that data were stored securely using encrypted software, locked cabinet files, or secure servers. Local Environ. 2017;21(3):5237. Additionally, if implemented inappropriately, incentives can contribute to inequality between participants and non-participants. Moreover, there is still likely room for improvements to the investigation and review processes regarding ethics within the field of refugee health research. Concerns of health equity and social justice were addressed by some (e.g., providing counseling or treatment when needed even when treatment was not part of the investigation [35], and providing vaccinations for all members in the community regardless of participation [36]). "You are not alone" strategies for addressing mental health and health promotion with a refugee women's sewing group. Ethics-related considerations and applications are presented in Tables3 and 4. Such a framework requires flexibility in order to remain applicable to the diversity in age, socioeconomic status, education level, and cultural practices among refugee populations, meaning that the weight given to a particular principle can and often should vary by context [49]. The majority (87%) of investigations obtained consent. Disasters. Yet the field of ethics is dynamic, and often difficult to navigate. Most of the investigations we reviewed obtained written consent, but not all addressed language barriers, literacy levels, languages that do not have a true written form, and cultural normalcy (e.g., in some cultures, verbal consent holds a higher value) [13]. 2015;26(2):50518. To mitigate these risks, one could seek community input to assess the acceptability of using interpreters (which could vary by health topic and setting) from the community, and if deemed unacceptable, hire bilingual individuals from outside the community when possible. Information regarding type of investigation, methods, and reported ethics considerations was abstracted. 2017;17(7):4951. Alemi Q, James S, Montgomery S. Contextualizing afghan refugee views of depression through narratives of trauma, resettlement stress, and coping. Cham (CH)2016. p. 285-318. 2016;18(6):142331. Use of incentives needs to be placed in context to understand the amount of influence they may have. Acarturk C, Konuk E, Cetinkaya M, Senay I, Sijbrandij M, Gulen B, et al. Nonetheless, refugees as a population have unique vulnerabilities that warrant a greater level of diligence in avoiding research-related harm. Counting the cost of Afrophobia: post-migration adaptation and mental health challenges of African refugees in South Africa. The authors declare that they have no competing interests. Almost half (141, 49%) included at least one special subpopulation (e.g., LGBTQ, pregnant women, people with disabilities, children under 5years old, adults over 65years old). Initial search results in PubMed yielded 912 articles, of which 288 (32%) were included in the analysis following the second stage of selection (list of articles included can be found in Additional File 1). To ensure investigations are conducted with respect for and protection of the participating individuals and community from the onset, ethical considerations should be at the forefront throughout the pre-investigation phase, during which questions are refined and methodological details are decided (e.g., location of investigation, content and logistics of consent, appropriate ethical and community approvals, mechanisms for recruitment of participants). CAS Anyone you share the following link with will be able to read this content: Sorry, a shareable link is not currently available for this article. Prehosp Disaster Med. Ultimately, strict privacy and confidentiality measures help to prevent further emotional or physical harm. Stevens A, Gilder ME, Moo P, Hashmi A, Toe SET, Doh BB, et al. To keep the number of publications for review manageable, the PubMed search was restricted to these keywords within the title. Quach A, Laemmle-Ruff IL, Polizzi T, Paxton GA. Empower the community post-investigation by presenting results at forums (where community members can comment), ensuring sustainability of an intervention that the community can assume ownership of, or providing classes or trainings. Kavukcu N, Altintas KH. Finally, investigators should carefully consider the need for and utility of their investigation before initiation to prevent overburdening refugees with similar or repetitive investigations, often referred to as over-researching [3, 6, 7, 38]. Sometimes participants move before investigation results are translated into permanent interventions; therefore, investigators should identify ways to provide immediate benefits to participants who may not see the investigations long-term impact [7, 49]. et al. Thirty-seven articles did not mention whether consent was obtained; of these, many were conducted as part of routine screening examinations at reception centers or during emergency or outbreak scenarios. Options for non-written consent may include verbal consent, audio or video-recorded consent, or witnessed consent (a witness signs) [48]. The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. Revised Common Rule. Participation may involve disclosing characteristics that could increase risks of stigma or place an individual in danger if revealed to other community members (e.g., rape, sexual identity, mental illness, sexually transmitted infections) [5, 7]. Division of Global Migration and Quarantine, Centers for Disease Control and Prevention, 1600 Clifton Road, MS EO3, Atlanta, GA, 30333, USA, Emma E. Seagle,Amanda J. Dam,Priti P. Shah,Jessica L. Webster,Nicole J. Cohen&Nina N. Marano, CDC/CSTE Applied Epidemiology Fellowship Program, Atlanta, Georgia, USA, Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee, USA, Emma E. Seagle,Priti P. Shah&Jessica L. Webster, Eagle Global Scientific, LLC, Atlanta, Georgia, USA, Office of Scientific Integrity, Office of Science, Centers for Disease Control and Prevention, Atlanta, GA, USA, You can also search for this author in 2011;17(10):899912. Additionally, to only conduct research in non-refugee populations, even those with similar demographic characteristics, could provide an inaccurate and inadequate representation [3, 12, 13]. Complex challenges are present throughout the refugees journey and may vary depending on whether the refugee is displaced (either internally or in a country of asylum) or has been formally resettled in a country that has granted permanent settlement. 2016;18(4):81927. volume14, Articlenumber:39 (2020) Most importantly, we have described the unique characteristics of refugee populations that suggest a need for greater emphasis on particular ethics principles and warrant the development of a refugee-specific ethics framework to aid investigators in the field. It would also require a degree of specificity to refugee populations that accounts for their heightened vulnerability and the characteristics that contribute to this vulnerability that make refugees unlike other individuals (e.g., limited political protections of stateless individuals, living conditions inside refugee camps, prior torture or trauma, economic instability, population mobility). 2019:19. Articles included in review and additional characteristics. These factors may contribute to health disparities among refugee populations and between refugees and non-refugees, which underscore the importance of conducting research specific to refugees and ensuring their representation in analyses (i.e., ensuring refugees are not excluded from analyses solely due to their vulnerability) [2]. Placing ethics in the Centre: negotiating new spaces for ethical research in conflict situations. Incentives were either non-monetary (11%), such as clothing or food, or monetary (89%). Transcult Psychiatry. Overall, the investigations impact should be carefully considered to ensure the findings can effectively benefit the population; and especially in emergency response settings, new investigations should be initiated only when necessary data cannot be obtained in other ways [11]. Ethical research in refugee communities and the use of community participatory methods. Translation of consent into the language the participant prefers may minimize misinterpretations. 2007;20(2):299319. However, given the high agreement rate on articles for which we did a second review, the number of data collection errors is likely low. 2017;54(5-6):71532. NM, NC, DB, and LO contributed to the study design and development of the data abstraction tool, provided insights into final conclusions, contributed to manuscript development/revisions, and served as subject matter experts. We reviewed reports of refugee health-related investigations published in English from January 2015 to September 2018 available in PubMed. Investigations differ from service provision in that the success of an intervention used in an investigation is still unproven. Common topics included mental health (139, 48%) and healthcare access (22, 8%). Jablonka A, Happle C, Grote U, Schleenvoigt BT, Hampel A, Dopfer C, et al. An established framework that identifies innovative solutions to protect refugees while ensuring scientific validity would aid in improving future investigations. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. Two (0.7%) stated no review was conducted: one was an audit, and therefore, according to the authors, did not meet the criteria for an ethics review; one was a students thesis, and according to the authors, ethics approvals were neither required nor sought for student theses at their institution [15, 16]. For 264 (92%) of the articles included, at least one of the investigators was from the country of the investigation. Although at the surface level these individuals appear to be the most appropriate cultural brokers, they can also (a) bias the results in that, fearing stigma, the participant declines to share information, or, potentially worse, (b) spread sensitive and private information disclosed by the participant into the community [5, 38, 39]. Mackenzie C, McDowell C, Pittaway E. Beyond do no harm: the challenge of constructing ethical relationships in refugee research. Thela L, Tomita A, Maharaj V, Mhlongo M, Burns JK. J Refug Stud. These reviewers may also play the role of ethics committees in locations that lack official ethics committees, such as conflict settings. Our review of the literature reveals promising adherence to basic ethics principles for obtaining consent, a cornerstone to protecting participants autonomy in all public health and biomedical investigations [47]. Some refugees are subject to continued oppression, restrictions on their liberty of movement, and gross power imbalances within refugee camps [6]. It was also understood that not all applications of ethics would be reported in the articles. 2010;2(2):22951. From this analysis, we have proposed a list of best practices, which include stakeholder engagement, respect for cultural norms, and post-study support. Transparency during this phase can address concerns regarding the impact on the community and answer questions for those unfamiliar with the investigational process [6]. 2016;30(10):47683. Of the 197 investigations with interpreters, 46 (23%) used native speakers from the community of interest. Best practices post-investigation may include empowering community health workers through trainings during or after the investigation; employing local refugees to help with the investigation, thereby providing them with job skills that will be useful post-investigation (this would often happen in the pre-investigation stage with the benefits extending into post-investigation); providing the means to sustain health education classes for the community; and providing resources to continue an effective intervention (or if applicable, providing the intervention to the wider community) [6, 40, 50]. Two investigations stated no consent was obtained, citing routine screening or clinical care and quality improvement as justifications for not obtaining consent [19, 20]. Privacy Tohme J, Egan JE, Friedman MR, Stall R. Psycho-social correlates of condom use and HIV testing among MSM refugees in Beirut, Lebanon. Yet for those unfamiliar with investigations, these distinctions can be confusing and appear unfair, as when only a small portion of the population receives investigational hygiene products or nutritional supplements. For instance, in some cases, armed guards or other authority figures may accompany investigators to ensure their safety. Ao T, Shetty S, Sivilli T, Blanton C, Ellis H, Geltman PL, et al. These challenges introduce complexities to conducting ethical investigations, including ensuring meaningful and voluntary consent, preventing real or perceived coercion to participate, minimizing undue influence (including economic), mitigating burden, and accounting for power imbalances between the investigators and participants [3, 5, 7]. J Community Health Nurs. For instance, this engagement can take the form of a formal community needs assessment or informal community-wide meetings to identify the type(s) of services needed or the benefits and risks of a specific project or intervention. 2016;46(12):258393. 2016;20(Suppl 3):40816. 2016;44(6):7817. Additionally, while a handful of investigations have elicited data on thoughts and opinions about the investigation process and related ethical challenges directly from refugees [2], it is unclear how such responses and information have been translated to the activities of the wider scientific community [2, 14]. The "reasonable person" standard for research informed consent. It was promising to see that the majority of investigations mentioned review by a formal ethics committee; however, not all discussed completion of this review in both the investigators home country and the country where the investigation took place. 2006;11(3):32938. 2018. https://www.unhcr.org/globaltrends2018/. Of these 264, 248 (94%) mentioned an ethics review (1% none, 5% unknown). Salt RJ, Costantino ME, Dotson EL, Paper BM. Article Zwi AB, Grove NJ, MacKenzie C, Pittaway E, Zion D, Silove D, et al. Research ethics and refugee health: a review of reported considerations and applications in published refugee health literature, 2015-2018, https://doi.org/10.1186/s13031-020-00283-z, https://www.hhs.gov/ohrp/regulations-and-policy/regulations/finalized-revisions-common-rule/index.html, https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html, http://creativecommons.org/licenses/by/4.0/, http://creativecommons.org/publicdomain/zero/1.0/, Ethics of health research conducted in conflict and other humanitarian settings. Therefore, we limited our search to only refugees to narrow the scope and conduct a more focused review (however, the inclusion of these populations in addition to refugees did not lead to exclusion of an article). Thousand Oaks: Sage Publications; 2009. Nonetheless, post-investigation activities include aspects of social justice and health equity that should not be ignored [40, 49]. Global Trends Forced Displacement in 2018. For instance, resettled refugees may feel less burdened by investigations because many of their acute needs have been addressed, while those not yet resettled may be more vulnerable. Although this percentage may have been influenced by communication barriers, it indicates that informed consent may not always be communicated effectively to refugee participants. Although many of the basic ethics principles examined in our analysis translate to other migrant populations, there are also differences in the regulatory processes of resettlement that makes these groups different and warrant a deeper assessment of ethics principles for different migrant groups beyond the scope of this analysis. Additionally, in the event that human biologic specimens are collected, ownership of these specimens should be discussed with respect for cultural and religious beliefs about the human body during the consent process. Respecting the rights, values, and beliefs of individuals and communities, as well as ensuring privacy (particularly in refugee camps), safety, and autonomy are also critical when engaging refugees. It is also important to acknowledge that differing approval processes between research and non-research investigations may have affected the application of ethical standards. Our analysis is a preliminary assessment of the application of ethics principles reported within the recently published refugee health literature. Public health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. The unique challenges refugees face can make them especially vulnerable to harm, burden, or undue influence in investigational settings [3,4,5,6,7]. Acute survival needs, fear of stigma or persecution, and history of trauma may present challenges to ensuring meaningful informed consent and establishing trust. 2001;357(9266):14323. Int J Environ Res Public Health. Additional file 1 includes the list of the 288 articles used in the review of ethical considerations in refugee health literature, additional characteristics of these 288 articles, and a list of the 64 variables abstracted from each article. Only 7% (of the 249 who obtained consent) discussed making consent an iterative process (obtaining consent at each stage of the investigation to ensure continued understanding of research procedures, the voluntariness of participation, and an understanding of what individuals are consenting for at each stage). Additionally, the use of only one publication database and the inclusion of only articles in English language may have limited the types of articles included (e.g., social science articles may have been excluded). PubMed Central Confl Health. HHS. For instance, refugees often differ from non-refugees in the degree of political protections or types of social services offered to them. Private data collection locations were used in 64% (n=183) of investigations (63% post-resettlement, 66% during displacement), including some in which participants were allowed to choose the location. For instance, participants could be motivated by the potential for economic gains or other tangible benefits (e.g., access to resources that are otherwise scarce), fear of consequences of not participating (e.g., when investigators in conflict areas are accompanied by armed guards, or fear of potential loss of benefits), or the possible misunderstanding that participation could help accelerate their resettlement process [7]. The last criterion consequently excluded investigations that solely used surveillance data, refugee databases, or chart reviews (secondary data sources). J Cult Divers. The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration. *The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Furthermore, the principles outlined in the framework could provide guidance and context to assist ethics committee reviewers in assessing the ethical integrity of proposals, particularly for reviewers unfamiliar with refugee health. We piloted the tool using 30 articles to be included in the analysis. This framework should include the basic principles found in both the Belmont Report and current public health frameworks, as well as other philosophies, including ethical guidance regarding underserved communities and ethics of community practice [11, 49, 52,53,54]. Given that not all journals require publication of all ethics applications we assessed, and publication requirements (word count, structure, reporting of post-investigation activities, etc.) Measles, mumps, rubella, and varicella seroprevalence in refugees in Germany in 2015. To provide a supporting structure for such a framework, we propose three key areas: engage, educate, and empower. Transcult Psychiatry. For instance, privacy should be held to the highest of standards when interviewing LGBTQ youth in a refugee camp, where disclosure of sexual orientation could place the individual in danger; but privacy may not take priority when examining less-stigmatized topics [49]. Kass NE. As we reviewed those articles, we noted additional ethics-related scenarios raised or addressed, and we added a question to the data abstraction tool. PubMed For instance, in our review, incentive type and value ranged greatly. Such leaders can often be identified through UNHCR and nongovernmental organizations in the refugee camp or community where the investigation is to be held. AD, JW, and PS contributed to the refining of the data collection tool, data collection, and manuscript development/revision. Bhutta ZA. Odwazny LM, Berkman BE. We examined 288 articles. ES developed the tool for data collection, conducted data collection, conducted the analysis, and was a major contributor to writing the manuscript. Lamkaddem M, Essink-Bot ML, Deville W, Gerritsen A, Stronks K. Health changes of refugees from Afghanistan, Iran and Somalia: the role of residence status and experienced living difficulties in the resettlement process. Gaps in smiles and services: a cross-sectional study of dental caries in refugee-background children. Compr Psychiatry. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. High-quality data from such assessments are needed to develop evidence-based interventions and services and to guide national and international health policies.

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