A participatory action research project evaluating a carers' representation group - Carers against Stigma

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer-led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.