Navigating The Maze: Caregiver Perspectives on Pathways to Mental Health
Care for U.S. Youth at Clinical High Risk for Psychosis
Abstract
Treatment for youth 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 illness later in life.
However, significant barriers prevent youth at CHR-P from accessing
specialty mental health services. Few studies have examined the pathways
to care for youth at CHR-P within the U.S. health system. The present
study reports the results of a codebook thematic analysis of qualitative
interviews conducted with 15 families of youth at CHR-P. We inquired
about their experiences navigating the health system to eventually
arrive at the CHR-P specialty program, including help-seeking events and
referrals, attributions for CHR-P symptoms, and barriers and
facilitators to care using a semi-structured interview guide. Caregivers
reported confusion and uncertainty regarding symptom attributions. They
also disclosed the significant challenges to obtaining mental health
care including mental health literacy, illness stigma, provider
availability and appropriateness, and adequacy of referrals. Notably,
most youth at CHR-P had encounters with emergency services during their
help-seeking journey. Our results help define targets for future policy,
research, and clinical efforts to improve access to specialty care for
youth at CHR-P in the U.S.