Perspectives on schizophrenia over the lifespan: a qualitative study

Longitudinal data suggest heterogeneity in the long-term course of schizophrenia. It is unclear how older adults with schizophrenia perceive changes in their experience of schizophrenia over the lifespan. We interviewed 32 adults aged 50 years and older diagnosed with schizophrenia (mean duration 35 years) about their perceived changes in the symptoms of schizophrenia and functioning over the lifespan. Interview transcripts were analyzed using grounded theory techniques of coding, consensus, co-occurrence, and comparison. The study was conducted by a research partnership involving a multidisciplinary team of academic researchers, community members, and mental health clients engaged in all aspects of study design, interviewing, and analysis and interpretation of data. Results revealed that, in regard to early course of illness, participants experienced confusion about diagnosis, active psychotic symptoms, and withdrawal/losses in social networks. Thereafter, nearly all participants believed that their symptoms had improved, which they attributed to increased skills in self-management of positive symptoms. In contrast to consistency among participants in describing illness course, there was marked heterogeneity in perceptions about functioning. Some participants were in despair about the discrepancy between their current situations and life goals, others were resigned to remain in supported environments, and others working toward functional attainments and optimistic about the future. In conclusion, middle-aged and older adults with schizophrenia believed that their symptoms had improved over their lifespan, yet there was substantial variability among participants in how they perceived their functioning. Functional rehabilitation may need to be tailored to differences in perceptions of capacity for functional improvement.