A Lived Experience—Informed Research Agenda for the Improvement of Care and Services for Individuals with Severe Mental Health Challenges

Individuals with a lived experience are increasingly being included in the design of mental health services research. Establishing research priorities of service users is an opportunity to achieve equity in allocating resources so that policy makers and health research funders are made aware of the issues that matter most to people who are affected by research. The purpose of this study is to formulate a research agenda to improve the quality of care and service delivery for individuals with severe mental health conditions, informed by their lived experiences. This qualitative study was conducted in Australia and was informed by biographical research and Interpretive phenomenological analysis [IPA]. Twenty-one participants were interviewed for the study. The theme, ‘Access to care and early detection’ included eight categories. The theme, ‘Care and treatment’, included fifteen categories. The theme, Continuity of care’, included six categories. Research questions that were developed for each category formed the lived experience research agenda for mental health services research. Research topics identified in this study were categorized as insufficiently researched, emerging areas of interest or well researched with insufficient translation into practice. The research agenda developed in this study may inform local and national research strategies.