Service User Representation in Qualitative Research on Cognitive Health and Related Interventions for Psychosis: A Scoping Review.

Abstract

Cognitive health in schizophrenia spectrum psychosis has received substantial empirical attention in recent decades, coinciding with the development and implementation of interventions including cognitive remediation. Subjective experience in psychosis, including qualitative explorations of service user perspectives, has also proliferated; however, there is no available synthesis of service user representation in the psychosis cognitive health literature. This scoping review investigated prevalence and characteristics of qualitative research reporting service user perspectives across the extant research on cognitive health and related interventions in psychosis. We conducted a literature search on qualitative methods in cognitive health and/or related interventions across PubMed, Web of Science, and PsycInfo databases. The review followed the PRISMA-ScR guidelines for scoping reviews and identified 23 papers. Data extraction included study design and sample characteristics, qualitative methodology, and reporting. Of 23 articles, 18 reported on user experiences of interventions, most often in the context of feasibility/acceptability for otherwise quantitative trials. Five studies described service user experiences of cognitive health separately from interventions. Only 3 included any service user involvement or participatory methods. Twenty articles reported any demographic characteristics, and fewer than half (11) reported any racial or ethnic sample characteristics. There was substantial variability in qualitative methodology and reporting across studies. Qualitative methodology is lacking in its representation and rigor across the cognitive health literature for schizophrenia spectrum psychosis. Additional inclusion of service user lived experience is critical for future research to better characterize cognitive health and inform interventions to promote recovery.