African migration to Australia has been driven by different circumstances. Large-scale intake of black African migrants did not occur until the turn of the twenty-first century, mostly through Refugee and Humanitarian Program entry visas and the family reunion stream, with limited migration under the skilled migrant stream. As a result of changing migration patterns, after the year 2000, research has been focused on understanding community needs and health profiles, as well as informing ongoing governmental and nongovernmental support programs. Additionally, undertaking academic research is essential to better understand how to assist these migrant communities with integration into host societies and economics. However, in host countries, each family member can act autonomously, which may threaten family power structures. Conflicts may arise between the ethical requirements for the conduct of academic research and cultural expectations.
The aim of our study was to discuss and summarize the research and ethical challenges of engaging SSA migrants in community-based social and health research in Australia, taking a reflective practice approach that draws on data from 15 discrete but complementary mixed methods studies undertaken by some members of the research team that authored this paper. An overview of the 15 projects used to inform this paper provides the study design, the sample size, and research and ethical issues that arose. For all qualitative studies, participants were recruited through existing community structures such as religious institutions, community associations, and social groups. Data were collected through a combination of semistructured individual interviews and focus group discussions.
Our research team attempted to limit potential bias and improve representativeness by focusing the sampling in local government areas with high concentrations of target migrant communities, to ensure inclusiveness and adequate coverage of the target population. We extensively used trained multilingual research assistants who were recruited from within the target communities to assist with data collection. Materials were first developed in English and then translated into target-community languages. Recruiting multilingual research assistants from target communities ensured that materials and research questions could be delivered in a language relevant to the various communities and could overcome any literacy issues, as well as ensure that our team was collaborating with various communities, rather than just doing research on these communities.
Using a reflective practice approach to research means assessing what has been done and how the complexities of the process can be improved, by being open minded to issues that arise and considering alternative actions. The use of meta-reflection is critical when developing guidelines or improving performance or practices.
ARP members and bilingual workers were asked to list issues emerging from meeting minutes and fieldnotes respectively. Responses to these questions formed the basis of key concepts and predetermined codes:
- recognition of patterns;
- thinking “systems” and “concepts”;
- having tacit knowledge and background information; and
- having relevant information.
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To ensure flexibility and group dynamics, identified categories were modified within the course of discussions as new concepts emerged inductively. An African Review Panel (ARP), a community‐owned steering committee whose members were drawn from the target communities, oversaw the implementation of these projects. The panel acted as a community‐based steering committee and a bridge between the community and the researchers, mobilized the SSA community members, and assisted with the recruitment of multilingual data collectors and individuals who could communicate the importance of community involvement in research. The panel also provided guidance about cultural and ethical issues that may emerge during data collection and assisted researchers in identifying and exploring the implications of the research findings.
While the ARP is important to ensuring that cultural issues are considered, within Australia, all university and medical research also requires review by a human research ethics committee. Research activities are governed by institutional policies but are also required to comply with the National Statement on Ethical Conduct in Human Research, which has been developed by the National Health and Medical Research Council of Australia. These guidelines have been integrated into an online protocol document to guide researchers, institutions, and ethics committees in the conduct of responsible and ethically sound research, and to assess the appropriateness of research that has a high risk, with institutions developing a separate process for low‐risk research. Therefore, we relied on human research ethics committees to give feedback on the potential cultural and ethical complexities that might arise.
Indeed, all human research ethics committees must have at least eight members:
- a chairperson with suitable experience in research and the ethics review process;
- two community members who have no paid affiliation with the institution;
- a nurse, counselor, or allied health professional;
- someone who undertakes a pastoral care role in a community (i.e., Aboriginal and/or Torres Strait Islander elder, community leader, or minister or religious leader;
- a qualified lawyer; and
- two people with research experience relevant to research proposals being considered.
While human research ethics committees must have Indigenous consultation for any research involving Aboriginal and Torres Strait Islander Peoples, there is no requirement that such committees include a person from African communities (or any migrant community). When researching migrant subpopulations, as specified previously, the human research ethics committee does expect that researchers consider cultural issues.
Key Lessons Learned from Participatory Research and Ethical Challenges
Our findings are summarized into broad themes around lessons learned from participatory research and ethical challenges.
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Lesson 1: Language Barriers and Community Engagement
Our team found that researchers’ beliefs about engaging communities as being a challenge due to language difficulties did not hold if a considered collaborative community engagement effort was undertaken. We found that all SSA communities had bilingual people willing to be mobilized and trained to facilitate the integration of SSA communities in social and health research. The process of the initial establishment of these engagement actors (i.e., the ARP and connections with community leaders) took time (approximately six months), but working with the community resulted in the development of trusting and enduring relationships that ensured that communities remained effectively engaged with the research process, relationships that could be reactivated with each project. In some communities (e.g., from the Democratic Republic of Congo, Somalia, Ethiopia, Eritrea, and South Sudan), there was a greater lack of awareness of the research process and limited English language proficiency.
The process of inclusive community engagement addressed this by:
- taking an inventory of community leaders within key community structures, through whom our team sought permission to engage their respective communities;
- gaining community leaders’ support in identifying and recruiting bilingual workers involved in community mobilization and study activities; and
- attending community events and functions (e.g., places of worship, drumming groups, women's groups) to share information with community at the grassroots level.
We found that these kinds of community engagement activities represented a powerful tool for engaging communities and codesigning research programs that addressed communities’ needs.
Refugee Camp
Lesson 2: Intersectionality and Community Structures
Three subthemes emerged. The first issue related to intersectionality in community engagement approaches, or how researchers did not know how to apply an intersectional lens when engaging target communities. The ARP included laypeople and ensured that the research team could achieve intersectionality in terms of gender, migration status, and age to overcome critical multidimensional issues that could impede effective engagement with community structures and gatekeepers. We found that SSA migrants’ community structures were culturally and sociodemographically diverse and problems may have been compounded by some limited educational attainment and broad‐based social inequalities complicated by cultural norms.
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For example, the highly patriarchal SSA communities experienced challenges with broader individual autonomy in Australia. Such inequalities determined who were seen by the participants or communities to be appropriate to participate and whose opinions were considered valid. Employing intersectionality when recruiting ARP members helped us overcome these challenges through training in research processes and creating a culture of empowerment in community mobilization and research. The second issue related to poorly documented and informal governance processes limiting the researchers’ understanding of these existing community structures. We investigated issues within these communities to explore networks of relationships and mediating structures such as places of worship or community‐based organizations, which allowed us to reach out to the community.
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The ARP enabled members to be involved in the planning and implementation of the research and emphasized the involvement of cultural insiders, that is, non‐ARP community members who were respected, listened to, and were well integrated in their communities. This community engagement model diminished power imbalances that could affect the research and incorporated cultural norms and beliefs of the communities in the research planning and development. The ARP enabled wider outreach to include the excluded, less vocal, and vulnerable community members, and the smooth navigation of the gatekeeping mechanisms at the community level, allowing gatekeepers to be integrated into our engagement processes with confidence and without creating conflicts among community members.
Lesson 3: The Importance of Food and Cultural Expectations
We found that, at a cultural or community event or while interacting with SSA communities, it was important to eat and accept food being offered by the target communities. It was also important to provide food during focus group discussions. Failure to offer or accept food at an event was seen as being akin to rejecting the person offering it, hence creating a sense of mistrust. Having culturally appropriate food and beverages at a social event was part of SSA culture and thus became a cultural expectation. Discussions during the meal could become a catalyst for publicly disclosing personal lived experiences, posing a potential breach of confidentiality. Hence, researchers tended to provide meals after and not before the focus group discussions.
Lesson 4: Time and Resources for Community Relationships
We found that conducting community‐based research required time and resources for building and maintaining community relationships. These community‐building efforts, such as participating in community events and building trust over time, went well beyond the scope of the research. Having the community actively involved throughout the research process, in everything from design, data collection, interpretation of data, and feedback on results, was very time consuming. However, in many ways, time spent in this way was an important investment. The participatory model enabled sociability as it provided opportunities for researchers to truly engage with the community. The researchers, with the support of ARP members, were able to work more closely with the community beyond the research tasks, including opportunities for informal discussions while sharing a meal and listening. This model broke the barriers of any possible conflicts, gained the trust of the community, and helped build sustainable relationships within the community.
Lesson 5: Flexible Notions of Time
Flexible notions of time across cultures. The dimension of time was perceived differently by researchers, community members, and community leaders. Issues around when activities would start were more fluid than might be considered in Western societies. For example, the majority of participants would arrive between 30 minutes to one hour late to meetings and focus group discussions. This required building time buffers into meeting timelines, with more socializing at the beginning of meetings to allow for delays. Working with the bilingual worker as enablers. Working with bilingual workers was crucial for effective engagement, as they provided cultural knowledge and context to the research and addressed the language barrier between communities and the research team.
Population Density of Australia
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