Include me in: user involvement in research and evaluation

Abstract

Purpose: This paper discusses the experiences of a group of ten user and carer researchers from mental health and learning disability services who worked together in a research and evaluation project between 2009 and 2012. The research project aimed to identify changes that took place as over 300 people moved from hostel accommodation into independent tenancies in flats and bungalows. These moves were part of a three year project involving a partnership between a local authority and a housing association. Design / approach: The paper describes the process of involving user and carers in the research process, identifying the challenges and benefits of involving users and carers. The ways in which people were trained and supported to take part and stay involved are outlined, as well as how the group felt they learnt new skills and increased their confidence. Findings: User involvement in research can mean different things with different levels of involvement, from consultation through to user-controlled research. The collaborative study had a range of benefits for the lives of the co-researchers, as well as contributing to the development of a new independent living service. A number of factors contribute to the success of user involvement in research and these are listed. Originality / value: This paper adds the voices of the co-researchers to the literature and provides ‘lessons learned’ for other researchers in this area.