“I don't know how to find my way in the world”: Contributions of User-Led Research to Transforming Mental Health Practice

Abstract

BACKGROUND: A number of forces have converged to promote participatory research in mental health. AIM: To present the findings of a user-led project in which eight people in recovery conducted narrative interviews with 80 peers. METHOD: Interviews focused on what participants' lives were like, what they would like their lives to be like, the role of mental health services, and how they would choose to spend their mental health dollars. Researchers used qualitative analysis to identify key themes from the first 30 interviews. RESULTS: Participants described multiple, profound losses and feeling that they were existing day-to-day, with their symptoms under control but not knowing how to make their way in the world. They suggested it would be useful to have a "map" to guide them back to a normal life, and reported that mental health care was most useful when it attended both to controlling illness and enabling them to rebuild an ordinary life. If they had the choice, they would spend their mental health dollars at this point primarily on having other people act as guides in pursuit of normal activities that interest them. CONCLUSION: Mental health care can be more effective in helping people join in to normal activities.