A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare

With evolving global conflicts, climate change and mass displacement of communities, the current refugee crisis is of urgent relevance to governments, healthcare providers and decision-makers [1, 2]. Upon arrival to their country of resettlement, families experience a number of challenges in accessing the support they require to fully integrate into their new community. Refugees also face disrupted social networks, economic instability, mental health concerns due to pre-migration exposure to personal or vicarious violence, language barriers, changes in cultural adaptation and resettlement, frequent relocation and migration, all of which can impact health, education and employment [3, 4].

In recent years, international calls have been made to prioritize addressing the institutional and structural injustices refugees face that contribute to poor health outcomes [5]. It is well understood that refugees often face psychosocial complexity and multi-dimensional healthcare needs, and current health systems perpetuate the ongoing health inequities faced by these communities. Health systems and services are often positioned so that those with precarious status are unable to access the care that they need, attempting to discourage the entry of new migrants [6]. Effectively addressing institutional and structural injustices involves reassessing the way healthcare is approached and restructuring the current systems to create action points to address the social determinants of health in an ethical manner [5].

Community-Based Participatory Research (CBPR) has been identified as a methodological approach with the potential to make substantial contributions to improving the health and well-being of traditionally disenfranchised populations while building capacity within these communities [7, 8]. CBPR engages community members as active and equal participants in every phase of the research process, facilitates trust-building, and enables the rigorous and ethical conduct of research with the refugee community. CBPR methods allow for tangible benefits for all partners involved. This includes the ability to gain a deeper understanding of complex community and institutional issues, and opportunities to enhance capacity-building amongst academic and community partners. CBPR approaches have been successfully employed to create interventions and programs that address the complex healthcare needs of refugee populations, in designing mental health programs for refugee children and adolescents, and in building strong research partnerships with refugee communities [7].

The core principles of CBPR state that all research using this methodology: 1) is participatory, 2) is cooperative, and creates partnerships that are collaborative and equitable, 3) is a cooperative learning process with a mutual exchange of expertise between all partners, 4) involves systems development and sustainability, and builds on the strengths of the community, 5) involves empowering all partners through mutual decision making, ownership of research and findings, and knowledge dissemination, 6) entails implementing an intervention based on the research, 7) recognizes the community as a social entity with a unique identity, and 8) requires a long-term commitment by all partners [9]. CBPR is typically an iterative process, by which community partners are involved in various stages of design and revision of the proposed intervention.

For CBPR to be implemented successfully, it should be present throughout the entire research process [10]. The research process has been defined as having a number of different stages, including the following: 1) inception of research problem/policy need, 2) obtaining funding, 3) study design, 4) engaging community/recruitment, 5) data collection, 6) data analysis, 7) knowledge translation and dissemination and 8) scale up [10]. As the needs of refugee communities are so diverse, efforts should be made to include refugees in all stages of the research process. Previous research has shown that in order for CBPR to be implemented most effectively, partners must be involved in all steps of the research process [11]. While CBPR methods have proven to be successful with refugee communities in general [7], the specific steps in which they participate in the CBPR process remains unknown. With the growing refugee crisis and associated healthcare needs, their involvement in the development of health interventions is essential. Therefore, this scoping review aims to review refugee involvement in the CBPR process related to healthcare and provide key recommendations on how to partner with this population in future research activities. The current study aims to answer the following research question; how have refugee communities been involved in contributing to CBPR healthcare research and design?

The study team identified a total of 4125 articles in the database searches, as described in Fig. 1. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-rater kappa-statistic of 0.85, suggesting high agreement. 1897 articles were excluded based on title and abstract review. A total of 180 articles underwent full-text review. Among those screened, 62 articles were excluded as they did not discuss a healthcare intervention or health policy. 49 articles were excluded because they did not include the population of interest (refugees). Given the unique pre-migration, migration and post-migration experiences of refugees, studies were excluded if they conflated immigrants and refugees and did not differentiate their involvement or experiences. 47 articles were excluded as they did not focus on CBPR/PAR methodology. While CBPR and PAR are sometimes used interchangeably, they do have slight methodological differences, as CBPR emphasizes the involvement of the community as an entity, defining it as existing beyond the confines of the research project itself [17]. Therefore, articles that were labelled as PAR but incorporated CBPR methodology (i.e. emphasized community-level engagement) were included. 6 articles were excluded as they did not focus on healthcare research/policy. Finally, 2 articles were excluded as they were not a primary research article, commentary or case report. We did not identify additional items in the references of eligible studies. A total of 14 studies were included in the final analysis after meeting all inclusion criteria [18‐31].

Overall, studies noted the immense value of having refugee partners, which allowed their interventions to be more successful as they were rooted in the community. The unique insights refugees brought forth allowed study processes to be carried out more smoothly. For instance, the study by Goodkind et al. discussed the potential for refugee mistrust in their randomized control trial [21]. The community advisory council, which included refugee community partners, suggested implementing a public showing of the random assignment portion of their study so members of the community could directly observe that the selection was truly randomized. The insight from refugee community partners directly impacted the study design to improve its success and make it more appropriate for the local context [21].

Our results also demonstrate that despite the growing emphasis on community involvement and engagement in health research, there is a lack of refugee involvement in the full scope of the CBPR process, as well as in health policy design. Previous research has shown that the use of community partners helps successfully facilitate policy change [32, 33]. It is clear from this work that there is a current gap in collaboration with refugee partners in policy design and advocacy.

It is important to recognize that refugees are a diverse, heterogeneous group with varying profiles, strengths and challenges [7]. Refugees come from different countries, cultural and religious backgrounds, varying races and ethnicities that all contribute to their pre-migration, migration and post-migration experiences, which thereby influences their health outcomes to varying degrees [8]. As part of the iterative nature of CBPR methodology, the process should be conducted with each unique group until their needs are met. Our results demonstrate that literature examining refugee involvement in CBPR conflated race and ethnicity variables, as well as the age of participants. Previous research has shown that race and ethnicity should be captured separately, as there are different meanings ascribed to the terms [34]. While there is little consensus on concrete definitions of race and ethnicity, they are both socially constructed concepts that may represent different aspects of identity. Often, race is used to describe shared physical traits as well as cultural patterns. Ethnicity is often used to describe shared cultural practices, beliefs, traditions and language [35]. Johnston-Guerrero suggested that race is more often determined externally, whereas ethnicity is more often determined internally [36]. As such, these concepts may differently impact one’s context, experiences and identity. Therefore, reporting these terms separately in research is critical to ensure experiences amongst various refugee groups are not conflated.

Results also showed the lack of involvement of refugees in specific stages of the CBPR process, with the lowest involvement in obtaining funding and scale up opportunities. Barriers to full participation in research processes should be examined further in order to eliminate health disparities and further build capacity amongst refugee communities.

Issues surrounding trust were discussed in a number of the included studies, which is consistent with previous research findings. The interactions between researchers and research participants have not always been mutually exclusive, which has created a sense of skepticism and mistrust amongst participants who may feel disadvantaged [37]. Historically, research participants have been used for the benefit of researchers to push their professional or academic agendas forward, and not for the direct benefit of participants themselves [38]. In particular, issues surrounding trust may be exacerbated if refugees have a history of trauma, privacy concerns and undetermined status [39]. CBPR methodology attempts to address this by emphasizing the importance of ethical conduct of research within partner communities. Refugee partners also have important insights into how to better establish trusting relationships with their broader community, as demonstrated in the study by Goodkind et al. In order to create true, meaningful research partnerships with refugees, issues surrounding trust need to be addressed throughout the entire CBPR process, regardless of research stage.

Limitations to this study include the wide heterogeneity in study populations, methods and sample sizes, resulting in some difficulty in drawing conclusions from the literature. There is scarce literature describing recent and effective interventions and policies that have been informed by the involvement of refugees at every step of the CBPR process. As such, a scoping review methodology is indeed appropriate.

Based on the literature, key recommendations to increase the level of involvement and engagement of refugee communities are listed below and summarized in Table 3

This scoping review is the first to systematically review published literature examining refugee involvement through CBPR processes to study and design healthcare interventions. It is evident that there are gaps pertaining to the extent of meaningful involvement of refugees in key stages of the research process, specifically in obtaining funding and scale up opportunities. This study highlights the need for dedicated efforts to increase the involvement of refugee communities as partners in research. Future research should aim to evaluate programs that have established refugee community partnerships to better understand their processes and outcomes. Studies should also explore the long-term impacts of having refugee communities as research partners in the populations they are working with, including the health outcomes of those populations. Future work may also include the use of refugee partners in policy design and implementation. As health intervention and policy research moves towards patient-oriented frameworks, it is also important to consider the barriers that prevent refugee communities and other marginalized groups from setting research priorities and engaging in the research process.