Views on mental health research in the context of schizophrenia: perspectives of peer support workers and researchers with lived experience – a qualitative study

Abstract

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. Over the past decades, mental health research has focused mainly on the biological causes of mental illness such as changes in the brain, genetics, and new technologies. Despite these efforts, real progress in treating serious mental illness such as schizophrenia has been limited. It is unclear whether this kind of research actually concerns what people with schizophrenia truly need. This study explored the views of people with lived experience of mental illness, including 12 peer support workers (people who use their own experiences to support others) and one researcher with lived experience. We conducted interviews to learn about their views on current research and what needs to be changed. Their views were enriched by interviews with 13 people with schizophrenia. The participants said that both biological and social factors are important for understanding mental health, but that progress has been slow and still does not meet people’s needs. A key finding: people with lived experience want to be involved in all parts of research – from choosing topics to sharing results. Many were also dissatisfied with current research practices. They felt that some study types are favoured over others, important topics are ignored, and there is too little funding for research that reflects real-life experiences. Overall, the study shows that including people with lived experience in mental health research could make it more useful and relevant. More inclusive approaches may help improve both the research and the care that people receive.