A qualitative study to investigate service user experience of participating in research

Abstract

Service user and carer involvement in research and health services is mandated by policy and has been taken up with different degrees of success in the NHS. This study employs a phenomenological approach to consider the service user and carer experience of participating in a service evaluation of a health centre in the North West of England. This was a small-scale study nested within a larger knowledge transfer project. Semi-structured interviews were undertaken with members of the review team, comprising a service user and carer assuming research roles, as well as an academic, an NHS manager and a project coordinator. Data was subject to qualitative, phenomenological analysis. The service user and carer perspectives take centre stage in this thesis, but are framed by the perspectives of the other participants in the study. Findings account for the features and experiences of involvement as described by the participants and exemplify how they made sense of involvement practices. They are structured in three broad themes: Work/Occupation, Personal Identity/sense of self, and Purpose. Several subthemes reflect wider discussion around the key concepts. Work/Occupation comprises the sub-themes: Motivation/background, Professionalism, Experience transfer and Relations with staff. Personal identity/Sense has subthemes: Yearning for a different status, Duality of role and Fulfilment or reward. Finally, the Purpose theme was constituted by four subthemes including: For self/for others dichotomy, Opportunity, Gaining transferrable skills and Social relations/democratic. Notions of Professionalism were prominent in the participants’ narratives, both as perceived requirement and personal development opportunity. This contrasts with existing literature in the field of service user and care involvement on professionalism. Competition within a work context is seen as positive and motivating and is not seen as antithetical to cooperative ideals. Reflexivity is found to be an important added dimension for the participating service user and carer.