Engaging hard-to-reach groups in research on sensitive health topics: lessons from a study of TB in the Somali community in Sheffield
By Mubarak Ismail
Participation in research is crucial in identifying and addressing health inequalities and persistent health problems, particularly for those groups who are disengaged, excluded or seem hard to reach. Engaging such communities in research enables them to address issues that are persistent and relevant to their lives. Community members can be involved in designing and interpreting data and identifying culturally appropriate interventions that have impact locally. One approach to researching sensitive topics with hard to reach groups is recruiting community researchers (CRs). Drawing on the experiences of researching tuberculosis (TB) in the Somali community in Sheffield (Gerrish et al 2010) this article highlights key lessons of using a community participatory approach and the recruitment of CRs to help reduce stigma associated with TB among hard to reach populations.
Recruiting community researchers
We found the recruitment of community researchers an essential part of conducting and facilitating the research process. Community researchers were recruited with help from community leaders. A community leader was part of the interview and selection panel. This allowed the team to test the knowledge and experience of the candidates of working with the Somali community and also their abilities and skills in the Somali language.
After recruitment, community researchers were familiarised with what the research involved and the research process. Training in the research process included qualitative research methods, interviewing techniques, informed consent, practicalities of data collection, confidentiality, anonymity and note-taking. Training sessions were taught by an experienced academic researcher and were interactive with some role play. Sensitivity to cultural traditions and stigma associated with the topic were explored to minimise the research risks, and protect the safety and interests of research participants. A TB awareness session for the community researchers was conducted by the TB specialist nurse; this was to provide CRs with some background knowledge about TB and to counter negative views about researching TB in the Somali community. The TB training also included some guidance and information for members of the Somali community on how to access TB services.
The community researcher’s role
Community researchers’ roles vary from being a community member / leader to being a researcher. These different roles require specific skills and abilities, and an ability to manage conflict within roles and deal with community expectations (Salway et al 2007). Key tasks for this study included conducting research interviews and focus groups, analysing data from different perspectives, facilitating the wider participation of the community in the research process, raising awareness about the purposes of the research, making sure that all the different stages of research were appropriate and applicable to the community, and identifying those who were ‘hardest to reach’.
Recruitment strategies for the study (Gerrish et al 2010) were planned at the early stages of the project in partnership with community representatives and community leaders. Barriers to participation were identified and tackled early. Community leaders and CRs helped the research team to understand what would be feasible in their communities and whether the research would be deemed relevant and necessary. In recruiting participants, CRs were active in their communities where they had already established links and networks. They helped to carry out the fieldwork with other research team members, participated in community events, attended prayers at local mosques and used various opportunities to engage with the community informally.
CRs played an important role in making contact with the Somali community, raising awareness about the aims and objectives of the research, gaining the trust of the community, and enabling the community to engage and participate in the research process.
Challenges for community researchers
Community researchers face many challenges while working with their communities and with academic researchers. These challenges arise in part because of a lack of clear boundaries between the CR role and that of being a community member / leader (Salway et al 2007). Dealing with gate keepers and negative perceptions of the research topic, managing relationships during and after the research, lack of time and prioritising are some of the of biggest challenges. Other challenges include developing research methodology skills and the ability to feel competent in conducting interviews, and adhering to project deadlines.
In this study, community researchers were supported by experienced researchers to overcome some of the obvious challenges. The ongoing dialogue between CRs and academic researchers helped in motivating and facilitating opportunities for co-learning and sharing.
Gerrish K, Ismail M and Naisby A (2010) Tackling TB together: a community participatory study of the socio-cultural factors influencing an understanding of TB within the Somali community in Sheffield
Salway S, Platt L, Chowbey P, Harriss K and Bayliss E (2007) Long-term ill-health, poverty and ethnicity: a mixed methods investigation into the experiences of living with a chronic health condition in the UK. The Policy Press: Bristol ISBN: 9781 86134 993 4
Contact: Mubarak Ismail, Research Assistant/Community Engagement Facilitator, Centre for Health and Social Care Research, Sheffield Hallam University
Tel: 0114 225 5731