Exploring experiences of people participation activities in a British national health service trust: a service user-led research project

BACKGROUND: People participation teams are being established in many British NHS Trusts. They support active service user involvement in staff recruitment interviews, in evaluations of care and in programmes to improve services. No studies exploring experience of people involved in these activities are available in published mental health literature. In this project we explored benefits experienced and suggestions for improvement provided by service users. METHODS: The design, materials and methods of the project were developed in workshops including N = 15 service users. Three service user researchers were trained to carry out research interviews and qualitative analysis of the data. They were responsible for the management of the project on a day-to-day basis with weekly supervision by academic researchers and authored this paper. The service user researchers interviewed people with at least 1 year of experience of being involved in a People Participation team activities. Interviews were based on a topic guide, which was developed in workshops with a larger number of service users (N = 15) and explored reasons for joining the group, how participation helped recovery and suggestions for service improvement. RESULTS: Fifteen service users were recruited and interviewed. Reasons for joining the group were identified: to “give back” to the service, to influence service change, curiosity, desire to meet like-minded people and to structure the day. Benefits reported included: sharing experiences, improving self-confidence, feeling valued, having a better understanding of services, overcoming personal fears, and developing better coping mechanisms for psychological difficulties. Being involved in People Participation activities helped to gain or refresh listening and interpersonal skills, communication skills, public speaking and creative skills and to develop better ways to cope with conflict. Suggestions for improvement were focused on changing staff attitudes, further promoting participation (e.g. through websites), simplifying payment procedures and establishing a moving-on support system to help people to access regular employment and gain full social inclusion. CONCLUSIONS: Our findings showed that People Participation initiatives can have benefits at least for some patients and help their recovery through a positive effect on self-confidence, providing room for feeling valued and for obtaining or refreshing personal skills. This provides support for the development and refinement of People Participation Teams and for larger scale research to test their effects.