Too Late and Too Little: Narratives of Treatment Disconnect in Early Psychosis

Abstract

Schizophrenia and other psychotic disorders are a source of significant morbidity, both for patients and caregivers. The first 2–5 years after the onset of psychosis are a critical period wherein treatment might effect disproportionate improvements in long-term outcomes. Specialized services have been developed with the goal of providing early and effective treatment—however, engaging young patients in these services remains a challenge. In this study we sought to uncover possible reasons for this finding by collecting participants’ narratives of their early treatment experience. We conducted in-depth, semi-structured interviews with 11 patients currently enrolled in a first episode psychosis program in Connecticut. Transcripts were analyzed using inductive thematic analysis. Participants reported that prior to them entering specialized treatment services, their initial contact with psychiatric care was brought about by abrupt behavioral changes that were noticed by others, and that this lead to treatment that was disconnected from their own concerns, which centered around more everyday challenges. This initial contact did not serve to engender trust or facilitate engagement in further treatment. Additional examples of disconnect were noted even after participants had entered specialized services, and these centered around the patients preference for conceptualizing their difficulties, treatment and recovery in multi-dimensional terms that emphasized social inclusion and vocational achievement. Participants in our study highlighted several areas of disconnect in the course of their early treatment. There is an opportunity to enhance early engagement by offering patients concrete evidence that their treatment priorities are understood and will be addressed.