Perceptions of User Involvement: a User-Led Study

Abstract

Background: User involvement in health services has been a priority for government since 1990. In mental health, concern has been expressed that involved service users (activists) are not representative of ‘ordinary’ patients. Aims: (i) To investigate service users’ perceptions of the outcomes of user involvement in two London boroughs. (ii) To determine whether the perceptions of outcomes differ between activists and non-activists. Method: The study was user-led. The user-researchers compiled a semi-structured interview schedule which they then administered to a sample of 40 people; 20 were defined as activists and 20 as non-activists. There were also 20 participants in each borough. Results: Activists were aware of more user groups and forms of user involvement than non-activists. However, in terms of perceptions of the outcomes of user involvement, there was little difference between the activists and non-activists. Discussion: There is very little extant work on the outcomes of user involvement in mental health services. This study examined this and, contrary to reservations often expressed, there was little difference between activists and non-activists. Conclusion: This is a pilot study. Further work should examine perceptions of the outcomes of user involvement by other stakeholders, for example, front-line workers, managers, carers and commissioners.