USER-INVOLVEMENT IN QUALITATIVE MENTAL HEALTH RESEARCH: Scoping Review

Involving laypersons, consumers and other members of the public, in actual health research practices is an upcoming phenomenon. It is grounded in the ideology that consumers have the right to have a central position in the health care treatment processes, and in the development of the health care services, including research. In research practices, user involvement should ensure that research is relevant and that the outcome of the research is grounded in the experiential knowledge of the involved users.
However, involving laypersons in research can be both beneficial and challenging. Benefits include designing research focuses on users’ own perspectives. Challenges include a risk of tokenism, lack of clarity about roles, professionals’ use of technical language, and power imbalances.
Involvement in research can be distinguishes between the three categories: User involvement in research, such as interview studies; Collaborative research, such as action research where service users are participating and involved in all stages of the research process; and User led research, which is initiated by and controlled by service users.
In this symposium, we exemplify and discuss the three categories of user-involvement in research and the pros and cons of involving laypersons in research.

User-involvement in research is on the international political agenda, e.g. mirrored by an emphasis on user involvement in funding of research. The idea is that user involvement can contribute positive to research. It has been problematized whether the involvement of mental health service users in research is genuine or symbolic, known as tokenism, just to fulfil the political agenda and the criteria’s for funding.
Aim: The purpose of this ongoing study is to identify empirical studies of user involvement in mental health research.
Methods: An ongoing scoping review is carried out 1) formulating research question, 2) identifying relevant studies: based on a systematic literature search conducted in 2017 in five databases (CINAHL, Embase, Medline, PsycINFO, and ERIC), 3) selecting studies, 4) charting the data, 5) summarizing results, 6) consulting service users.
Results: 24 studies were included in the review. The results illuminate how: 1) mental health service users are involved in research, 2) user-involvement influence the research process and 3) the users themselves, such as challenges related to technical language and power imbalances.
Preliminary conclusion: There is a need for education of mental health service users, professionals and researchers doing collaborative research to develop a shared understanding of collaborative research.