Families' experience with seeking treatment for recent-onset psychosis

Abstract

Objective: Qualitative research methods were used to understand the experiences of families seeking treatment for young people with recent-onset psychosis; such knowledge can inform services design.

Methods: The authors conducted open-ended interviews in 1999 through 2002 with family members of 13 patients with recent-onset nonaffective psychotic disorders in the New York metropolitan area, focusing on their experience in seeking treatment and engaging with mental health services.

Results: Family members described early lack of clarity of diagnosis and obstacles to obtaining treatment. Entry into the mental health system frequently occurred in the context of crisis, with African-American families specifically reporting police involvement. Inpatient hospitalization was depicted as traumatic yet offering relief. Aftercare was described as fragmented, and issues with third-party payers were paramount. Families expressed a desire for more education, information, and support and described their struggles with stigma. These data from families are presented in the context of more recent literature as to the efficacy of specialized treatment programs for early stages of psychotic disorder and their involvement of families.

Conclusions: These qualitative research data support the importance of involving and educating families about psychosis: its recognition, its treatment, and access to services. They also highlight the need to address stigma and implement structural changes in treatment that ensure continuity and coverage of care. Specialized first-episode psychosis services may address these issues, and they may minimize the traumatic experiences of involuntary hospitalization and police involvement early in treatment.