Views on mental health research in the context of schizophrenia: perspectives of peer support workers and researchers with lived experience - a qualitative study.
Since the end of the 20th century, mental health research has been increasingly driven by the hope of uncovering the neurobiological roots of mental illness. Despite progress in this area, significant therapeutic breakthroughs - especially for complex conditions such as schizophrenia - remain limited. It is unclear whether these research priorities truly align with the needs and experiences of those affected. Greater involvement of people with lived experience in shaping research questions and processes could enhance the clinical relevance of research and lead to more effective, patient-centered interventions.
This qualitative study explores the perspectives of peer support workers and researchers with lived experience in mental health research on the context of schizophrenia. We conducted semistructured interviews with 12 peer support workers and one researcher with lived experience. To contextualise and illustrate the findings, selected perspectives from 13 additional interviews with patients with schizophrenia are included. Interviews were analysed using qualitative content analysis according to Kuckartz.
Three central categories were identified: (1) Perception of mental health research: Participants valued both neurobiological and social approaches to research equally. They acknowledged certain advances; however, these developments were viewed as gradual and still inadequate. (2) Participation in research: Participants strongly demanded greater involvement of people with lived experience in all research stages. (3) Manner of research: Participants expressed a strong desire for user-set priorities, dissatisfaction with current research topics, perceived marginalisation, structural issues such as publication bias (e.g. favouring large randomised controlled trials over qualitative studies) and a lack of funding.
Overall, the findings highlight the importance of incorporating lived experience in all stages of mental health research. More inclusive approaches are viewed as essential for improving research and care.
This qualitative study explores the perspectives of peer support workers and researchers with lived experience in mental health research on the context of schizophrenia. We conducted semistructured interviews with 12 peer support workers and one researcher with lived experience. To contextualise and illustrate the findings, selected perspectives from 13 additional interviews with patients with schizophrenia are included. Interviews were analysed using qualitative content analysis according to Kuckartz.
Three central categories were identified: (1) Perception of mental health research: Participants valued both neurobiological and social approaches to research equally. They acknowledged certain advances; however, these developments were viewed as gradual and still inadequate. (2) Participation in research: Participants strongly demanded greater involvement of people with lived experience in all research stages. (3) Manner of research: Participants expressed a strong desire for user-set priorities, dissatisfaction with current research topics, perceived marginalisation, structural issues such as publication bias (e.g. favouring large randomised controlled trials over qualitative studies) and a lack of funding.
Overall, the findings highlight the importance of incorporating lived experience in all stages of mental health research. More inclusive approaches are viewed as essential for improving research and care.