Experiences of user involvement in mental health settings: User motivations and benefits

WHAT IS KNOWN ON THE SUBJECT?: User involvement, when people who have accessed services become actively involved in aspects of mental health care, can sometimes be "tokenistic" and not well thought through. Users are often involved in their own care, and asked for feedback, but are less likely to be meaningfully involved in developing services and training staff. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: To implement meaningful involvement, it is important to know why some users choose to devote time to such activities. User representatives in this study, involved in a UK mental health service, wanted to help people in a similar position and give something back to those that helped them. As people started involvement activities, such as interviewing staff, they gained confidence and felt part of something that was making a difference. After being supported by staff to explore opportunities, representatives become more independent and some moved to different, sometimes salaried, roles. Some representatives did not feel valued or supported. Staff often controlled opportunities, and many users missed out on being involved. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Staff need to understand and receive training on involvement. The definition of involvement should be agreed by users and staff together, and outcomes of involvement activities must be fed-back to users on a regular basis. There should be dedicated involvement workers in services, to support individuals and integrate involvement into the system. It is important to consider how to make involvement accessible to more mental health service users. ABSTRACT: Introduction Despite guidance promoting user involvement, meaningful involvement continues to be debated within services. To effectively implement involvement, it is important to acknowledge why users devote time to such activities. Aim This study explores user representatives' experiences of involvement, including motivations and personal benefits. Method Thirteen user representatives involved in activities such as staff training and interviews were recruited from a UK National Health Service mental health Trust during 2015. Themes within semi-structured interviews were developed using constructivist grounded theory analysis. Memo-writing, process and focused coding, and core categories supported development of the conceptual framework of being a user representative. Findings Being a user representative was inextricably linked to wellness, yet staff governed opportunities. Making a difference to others and giving back were initial motivating factors. Experiences depended on feeling valued, and the theme of transition captured shifts in identity. Discussion User representatives reported increased confidence and well-being when supported by staff. However, involvement triggered mental health difficulties and identified the need for regular monitoring and reflection of involvement activities and practice. Implications for practice Services should consider coproduction, where users and staff agree together on involvement definitions. Dedicated involvement workers are crucial to supporting individual well-being and monitoring involvement.