“Why shouldn’t I expect a lot from life?” – a qualitative study of what facilitates long-term recovery in first-episode psychosis

Abstract

Background: Qualitative research frequently characterises recovery, but more knowledge on subjective experiences of facilitators of long-termrecovery in psychosis is needed. This interview study aimed to explore what people with first-episode psychosis (FEP) highlight as important for their long-term recovery. Methods: Interviews with 20 individuals in recovery (personal and/or clinical) participating in two follow-up studies, 10 and 20-years after treatment start for a first episode schizophrenia or bipolar spectrum disorder. Interviews were thematically analysed by the research team that included a peer researcher. Results: The analysis generated that personal agency was experienced as the overarching facilitator of recovery, with five themes: 1. Doing recovery in everyday life, involving agency in daily life; 2. Re-evaluating risk, involving re-evaluating limitations and stress reduction; 3. Becoming a caregiver, involving development from being cared for to taking care of others; 4. Negotiating normality, involving identity and social inclusion; 5. Owning and sharing your story, involving accepting lived experience and overcoming stigma. Discussion: All participants described themselves as the main facilitators of their own recovery, and treatment as secondary to their efforts. Gradually testing limitations and taking risks, providing social support to others, as well as owning and sharing your story were crucial for promoting long-term recovery in FEP. Clinical implications include supporting service users’ agency with strength- based interventions and shared-decision making, and refining stress reduction psychoeducation in a long-term perspective.