Pathways to Care for First-Episode Psychosis: Gaps and Bottlenecks

Introduction: Identifying factors that contribute to the duration of untreated psychosis (DUP) among individuals experiencing first-episode psychosis (FEP) is critical since longer DUP is associated with a constellation of negative outcomes (e.g., lower functioning, lower quality of life).  The aims of this federally-funded study are to characterize the pathways to care from the onset of psychosis to entry into the early intervention services for individuals experiencing FEP and to identify gaps and bottlenecks in the pathway to care that contribute to lengthened DUP for these individuals and their families.

Methods: A sample of 20 individuals experiencing FEP who participated in a specialized FEP treatment program and 10 of their family members were enrolled in this study. Semi-structured qualitative interviews using a timeline tool were used to characterize participants’ lives during the onset of psychosis and explore their help-seeking events from the onset of FEP to their entry into the specialized program.  Help-seeking events included formal (e.g., hospitalizations) and informal (e.g., clergy) sources of help.  Interviews were audio recorded and professionally transcribed. Data was analyzed using grounded theory. The following strategies were used to ensure the trustworthiness of our analysis: generation of an audit trail, team debriefing meetings, and member-checking presentations with consultants and stakeholders (e.g. clinicians, administrators).

Results: The sample of individuals experiencing FEP consisted of 45% female, 35% African American and 55% Hispanic. Their average age was 23.7 years old (sd = 4.1).  Family members were mostly female (80%), mothers (80%), and brothers (20%). The median DUP in our sample was 4.5 months. Following FEP and before entering specialized services, 95% percent of participants had at least one psychiatric hospitalization, 65% visited an outpatient mental health clinic, 40% had contact with police, and 40% visited a primary care provider.  A grounded model of participants’ pathways to care emerged from our analysis. The model captures how help seeking delays were influenced by the misattribution of symptoms, stigma towards mental health care, and self-reliance. These factors created a cloud of uncertainty in which individuals with FEP and their family members struggled to make sense of what was happening, when to reach out for help, where and when to go, and what to expect from treatments.  Contact and experiences with mental health services (e.g., hospitalizations, outpatient care) were a critical juncture in the pathway to care that could reduce or increase uncertainty and expedite or delay appropriate care, thus contributing to DUP.  These experiences were shaped by the type of interpersonal connections individuals with FEP and their family members made with providers (e.g., positive or negative), the quality of care received, the extent of family involvement in care (e.g., partnership, alienation) and type of care transitions (e.g., care coordination, fragmentation).

Conclusions: Study findings indicate that efforts to reduce DUP should focus on reducing the uncertainty individuals with FEP and their family members face when seeking care by improving their experience with mental health services. Implications for using this grounded model to inform the development of strategies to reduce DUP will be discussed.