Conducting health and social research with minority ethnic communities: Exploring the experiences of Community Researchers

Sarah Salway, Punita Chowbey and Beverly Levy, CAR, School of Nursing & Midwifery,

University of Sheffield

BackgroundRecent years have witnessed a huge rise in health and social research that aims, and claims, to engage ‘the

researched’ as active partners. This methodological, and some would argue political, shift, stems from at least two concerns. Firstly, it is increasingly recognised that many policy and practice interventions have disappointing or unpredicted outcomes due to a failure to adequately understand the broader context within which they are situated, and particularly the ‘lived experiences’ of marginalised groups. Secondly, there is growing acknowledgement that research itself frequently helps to shape and support socio-political structures that disadvantage and oppress.

Research involving minority ethnic communities brings into sharp focus the central concern of ‘how we produce knowledge about difference, and how what we know (or claim to know) is caught up with specific histories and relations of power’ (Gunaratnam 2003:3). How can white, middle-class researchers study those who have been historically subordinated without further producing sociological accounts distorted by the political economy of race and class? (Anderson 1993, cited in Gunaratnam 2003). Clearly, the ‘distance of difference’ (Gunaratnam 2003:) needs to be bridged somehow.

One strategy that is increasingly used to ‘engage’ communities, is to involve ‘Community Researchers’ in the design and conduct of research studies. A Community Researcher (CR) is usually an individual who is a member, and has a detailed understanding of, a particular ‘community’. Cameron and Gibson (2001) state that such researchers are a central element of the ‘Community Partnering’ process and are the key to building successful relationships with people who are marginalised or disadvantaged. It has been argued that CRs bring to a project a unique perspective and skills and contribute to the research process by: articulating the experience of participants in their own language; increasing trust and confidence; and advising on appropriate ways of conducting the research. Grander claims, relating to the transformatory power of such research approaches, have also been made (Fletcher 2003). In practice, the ways in which CRs are incorporated into research varies greatly.

Notwithstanding this diversity, it is striking that most literature arguing for the importance of ‘user involvement’, or documenting ‘lessons learned’ from such ventures, is written from the perspective of academic researchers. Furthermore, as Owen (2005) points out, the ‘terms of engagement remain substantially defined by academics and professionals’. Very little is known about how CRs themselves experience the research process.

Research approachThis poster is based upon a case study of one particular research project that was undertaken in order to explore

the experiences of CRs engaged in research within their own ‘communities’. The larger research project was funded by the Joseph Rowntree Foundation and focused on exploring the relationships between long-term ill-health and individual and family poverty and well-being. A team of 12 CRs were recruited and trained to work alongside researchers from the University of Sheffield and London School of Hygiene & Tropical Medicine. The CRs were recruited and employed through Social Action for Health, an NGO working with communities in East London on health and social welfare issues. Three phases of qualitative fieldwork were conducted among four ‘communities’ in East London: Bangladeshis, Pakistanis, Ghanaian and White English. Here we draw on information gathered through: detailed one-to-one interviews with 10 of the CRs; group discussions and debriefing sessions; and project diaries kept by the research team.

ObjectivesThe objectives of the investigation were to understand and document the experiences of a group of CRs.

The project aimed to capture the perspectives of CRs themselves and explored:

• Motivations for taking on the role of CR• Perceived value of the work at the individual level• Perceived contribution of the work to the wider community• Relationships between CRs and university researchers• Relationships between CRs and other community members• Difficulties/challenges encountered by CRs during the work • Perceived longer term effects of the work at individual and community level

The project aimed to document practical lessons for working with CRs (such as issues to consider in designing training programmes, workload scheduling, payment levels and so on). In addition, the project aimed to provide insight into ethical and theoretical issues including: complexities relating to role/identity conflict; issues of confidentiality and disclosure; power dynamics and control of the research process; community diversity/divisions and the representation of excluded groups, among others.

FindingsOur study revealed that the involvement of CRs as an attempt to bridge ‘the distance of difference’

was unproblematic neither for the university research team nor the CRs themselves. CRs reported both positive and negative elements of their experience of the role. Their narratives illustrated their very different positions vis-à-vis both the communities involved in the research and the broader research process as compared to the university researchers. The findings revealed various implications for the individuals who play the role of CR that may be overlooked by those designing and leading research studies. These factors also alerted the university researchers to a number of methodological, theoretical and ethnical issues that require critical reflection.

Being too closeWhile the CRs were able to ‘enter’ their communities and gain access to individuals more easily than

the university researchers, being close to the community had adverse consequences for both the CRs and the broader research project. In particular, concerns regarding confidentiality of information were expressed by some respondents and evidently made many more individuals reluctant to speak to the CRs in any detail. It was also clear that some CRs found maintaining confidentiality difficult, particularly where information being shared had significance for other individuals and therefore disclosure could be considered to be in people’s best interest. In this way, there was potential for CRs to be placed in extremely difficult situations.

Importantly for the CRs, their involvement in the research had significant effects on their relationships with community members beyond the life of the project. CRs lived and, in some cases, worked in the communities under study and so encountered the research respondents repeatedly following completion of the study. In some cases this presented the CR with dilemmas. The process of conducting the research had allowed the CRs access to information about people’s illnesses and private lives that they would not normally be privy to. Following the research it was difficult for CRs to know whether to pretend that they did not know anything about the issues that had been shared during interview or to show concern / enquire after the situation. In a couple of cases CRs reported that their friendship with particular individuals had been adversely affected. CRs also reported forming strong attachments to some respondents or feeling responsible for respondents so that they felt obliged to make telephone calls, pay visits or try to help in other ways following completion of the research. CRs found the work to be emotionally draining and disturbing at times; discovering things about their communities that they had not been aware of previously.

In many cases, CRs felt that they had taken favours in order to complete the research, for instance by taking people’s time for interview, or using their contacts or space to arrange data collection activities. The ongoing nature of their relationship with these community members implied the need for such favours to be repaid in some way. Thus, CRs ended the research study indebted to community members in a more serious way than the university research team, who could move on.

Conflict of rolesIn addition to being ‘too close’ to the community, taking on the job of CR created uncomfortable

role conflicts for some. Several of our CRs usually worked as instructors or trainers in their communities and were used to providing information rather than listening to people. Community members also expected them to know the answers and this made data gathering difficult.

Being members of the community also meant that it was difficult for some of our CRs to transgress cultural norms and boundaries in the way that may be needed for in-depth qualitative research. For instance, our female Bangladeshi CR felt that gendered expectations prevented her from engaging with men and class-based divisions created problems for several of our CRs. Such barriers were not felt so strongly by the university researchers whose professional capacity and distance from the community enabled them to engage with a wider range of individuals (once initial community entry had been negotiated).

CRs tended to rely heavily on personal networks and friendships to identify potential respondents for the research. This process also led to role conflict and limited the amount of interviewing that CRs could carry out themselves. CRs sometimes felt uncomfortable that they were being paid for their time and that they were asking community members to participate for free – again a reflection of the role conflict that they felt.

“to ask them to give their time for free, yeah, I did feel a bit cheeky doing all that especially when I knew that I was being paid for it”

Also, importantly, the CRs were unused to ‘stepping back’ and critically examining the behaviours, attitudes and values of their fellow community members. They found it difficult to be reflexive; to consciously acknowledge their own preconceptions and influences on the research process, and to assume the role of observer and analyst. During debriefing and analysis sessions several of the CRs found it hard to put their own viewpoint to one side.

The conflict observed between the role of community member and researcher can have significant implications for researching ethnicity and its relevance to health. We found that CRs from the minority ethnic groups tended to essentialise their own communities and to exaggerate the differences between themselves and the majority White population in much the same way as many of the research participants. At the same time, the White CRs were uncomfortable reflecting on White ethnicity.

An empowering process?

Individual interviews with the CRs suggested that many of them had found being involved in the research project an enjoyable and worthwhile experience. CRs talked enthusiastically about learning about their own communities and gaining new skills. In addition, the CRs from the minority ethnic communities spoke of wanting to make a difference to their community and had been attracted to the job because it involved working with their ‘own people’.

“some people may contribute to their communities in terms of making donations and things like that. My contribution to the community is actually helping to bring awareness of such illnesses and its impact on the family and it will go a long way in [informing] policies”

“for us it was very positive, we worked as a team even from the first day”

“the feedback [analysis workshops], that time was really exciting for me. Something is came out from the Pakistani community which I never ever thought about that, so that was really interesting for me”

However, it was also clear that most of the CRs found the role difficult and, despite quite extensive training, most were unable to carry out the full range of tasks originally envisaged. Supporting the CRs was time-consuming and stressful for the university researchers as many CRs found it difficult to complete tasks on time, to work independently and to balance the work with other commitments.

Conclusions and challenges CRs can provide access and insights into their community. But, does their embeddedness imply they

should be treated as respondents and not as analysts?

How should CRs’ own perspectives and insights be incorporated into the research process?

We must be explicit about our epistemology (what we treat as data and how we reconcile accounts) How can CRs be effectively involved in clarifying such research assumptions?

In particular, how can the risks of essentialising ethnic group difference associated with the

involvement of CRs be minimised?

The involvement of CRs lends legitimacy to a research study’s findings. But, does this place an unreasonable responsibility upon CRs to effectively represent their community?

How can we ensure and how can we judge whether adequate representation of ‘communities’ is achieved?

How should CRs be recruited, trained, supported and monitored? There is a danger that academics dominate the process, but providing necessary support is extremely time-consuming and detracts from other research activities. How can we justify the costs? What does this imply for the skills needed in an academic?

The involvement of community members in a research study may provide a positive learning experience for the individual. But aren’t there better and more cost-effective ways of empowering local people?

Given the costs and potentially negative impacts on CRs, should all research into issues of race/ethnicity necessarily actively involve community representatives?

Can non-participatory research contribute to positive social change and reduced disadvantage? How best?

References:Anderson, M. (1993) Studying across difference: race, class and gender in qualitative research. In

Stanfield, J. and Dennis, R. (Eds) Race and ethnicity in research methods. Sage, Newbury Park, pp39-52.

Cameron, J. and Gibson, K. (2001) Shifting focus: Alternative Pathways for Communities and Economies, A Resource Kit [on line] Available at http://www.communityeconomies.org/training accessed on 4.7.05.

Fletcher, C. (2003) Community based participatory research relationships with aboriginal communities in Canada: an overview of context and process. Pimatziwin 1910:32-61.

Gunaratnam, Y. (2003) Researching ‘race’ and ethnicity, methods, knowledge and power. Sage, London, Thousand Oaks, New Delhi.

Owen, J. (2005) Users, research and ‘evidence’ in social care. In Burr, J and Nicholson P, (Eds) Researching Health Care Consumers, Critical Approaches Palgrave (MacMillan) Basingstoke p155-179

Acknowledgements:We thank the whole ‘Limiting long-term illness’ research team for their hard work and the Joseph

Rowntree Foundation for funding this larger project. The sub-project upon which this poster is based was funded by a CAR, Departmental Research Grant, University of Sheffield.

Arguments for the involvement of community members (or ‘users’)

Data ‘validity’ & usefulness: Emancipation:Access & recruitment Sharing of powerLanguage Unheard voicesInsider perspectives Empowering processDissemination