Self-help groups as mutual support: what do carers value?

The literature suggests that the United Kingdom, in common with Europe, North America, Canada and Scandinavia, has seen significant growth in single-issue self-help/mutual aid groups concerned with health and social care issues since the 1970s, but there is only ad hoc academic and policy interest in such groups in the United Kingdom. This article presents findings from a doctoral study with two self-help/mutual aid groups for carers in South-East England. The data are drawn from semistructured interviews with 15 active members which explored reasons for joining, benefits derived from membership, and perceived differences between support gained by membership and their relationship with professionals. Most group members had prior experience of voluntary work/activity, which influenced their decision to join, often prompted by a failure of the ‘usual’ support network of family/friends to cope or adjust to the carer's needs. Members reported personal gains of empathy, emotional information, experiential knowledge and practical information, based on a core value of reciprocity through peer support. It is this latter benefit that sets apart membership of self-help groups from groups supported by professionals who may not appreciate the scope and breadth of carers’ responsibilities, or of the importance of their relationship with the person for whom they care. In this way, self-help groups offered additional, but not alternative, ‘space’ that enabled members to transcend their traditional role as a ‘carer’. It is concluded that self-help/mutual aid groups, based on reciprocal peer support, offer a valuable type of resource in the community that is not replicable in professional–client relations. The findings have contemporary relevance given the raft of new policies which value the experiential knowledge built by both individual and collectives of carers.