Navigating the Maze: Caregiver Perspectives on Pathways to Mental Health Care for U.S. Youth at Clinical High Risk for Psychosis

Abstract

Aim

Treatment for youth who are at clinical high risk for psychosis (CHR-P) presents an opportunity for early intervention with the capacity to decrease the burden associated with a potential psychotic disorder later in life. However, significant barriers prevent youth at CHR-P from accessing speciality mental health services. Few studies have examined the pathways to care for youth at CHR-P within the U.S. health system.

Methods

The present study reports the results of a codebook thematic analysis of qualitative interviews conducted with caregivers (primarily parents) of 15 youth (ages 12–25 years) who entered a CHR-P speciality program. Using a semi-structured interview, we inquired about their experiences navigating the health system to eventually arrive at the speciality program, including help-seeking events and referrals, caregivers' attributions for youths' CHR-P symptoms, and barriers and facilitators to care.

Results

Caregivers reported confusion and uncertainty regarding the causes of symptoms. They also disclosed the significant challenges to obtaining mental health care, including low mental health literacy, illness stigma, provider unavailability or appropriateness and adequacy of referrals. Most of the youth had encounters with emergency services during their help-seeking journey.

Conclusion

Our results help define targets for future policy, research and clinical efforts to improve access to speciality care for youth at CHR-P in the U.S.