Working with sickle cell / thalassaemia support groups

Abstract

This chapter reports on the processes of research in working with support groups for sickle cell anaemia and beta-thalassaemia in conducting community-based surveys of knowledge of these two inherited conditions. The conditions affect, and the research therefore entailed, support group members of African-Caribbean descent and of South Asian descent interviewing members of their own ethnic groups in the community. A more traditional account of the results is given in Dyson (1997) and Dyson (1998) respectively.

The chapter will examine the consequences of user involvement being a pragmatic response to research that was already underway, as well as the manner in which user involvement frequently had contradictory effects in terms of access, quality of data obtained, and levels of mutuality between research co-ordinator, community interviewers and community members.

The opposing views on the possibility and desirability of social research empowering clients (Humphries and Truman, 1994; Hammersley, 1995) are each felt to misconceived. This is for several reasons. First, it is because neither the interviewers nor the communities are homogenous. The category African-Caribbean and South Asian conflate, in the case both of interviewers and interviewees, important differences such as country of birth, religion, language, gender and age. As such their interests are not always clear-cut nor unidirectional.

Second, it is sometimes the case that various parties in the research process will have conflicting values and interests. For example a mother of a child with beta-thalassaemia may regard it as a step forward to air the issue in a Gujarati Hindu community, but many community members interviewed clearly did not.

Third, it is not always clear that in the pursuit of certain declared values that it is appropriate to defer to the face value views of community members and abandon a critical perspective which asserts claims to knowledge counter to the facts as expressed by community interviewers or community members. Community interviewers and/or community members may express oppressive views which the research co-ordinator may wish to challenge. This makes claims to empower clients through research difficult to sustain or indeed to regard as desirable. It may be that, following Troyna (1994) we need to draw a distinction between attempts to build an ‘anti-oppressive research’ and a ‘critical social research’. The latter may be regarded as a more modest, more achievable and a less internally contradictory goal.

In one sense if we conceive the question of evaluation to be one of the degree or which community interviewers and/or other community members were empowered, we would probably be left with some fairly tenuous claims to having imparted a limited range of skills, of dubious long-term value, to some of the interviewers. The legitimacy of claims to empowering those interviewed would be still less. If, however, we recast the question not to ask whether there was any empowerment of users of the services, but to ask what challenges were provoked by the research, then we may have more grounds for optimism.

The outcomes though were nothing if not complex and ambiguous. The research raised self-esteem in some researchers, but also anger. It raised some consciousness in community members but also deep anxieties. Findings added legitimacy to service decisions already made rather than changing services themselves. But most interviewers, many interviewees, and the author were challenged in unexpected ways. It is within the responses to these challenges that the possibility for change lies.