Pathways through Care: Decision-Making and Treatment Drop-Out in Early Psychosis

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Reducing the staggering personal, clinical, and public health burden of schizophrenia and other psychotic disorders, which typically have their onset in adolescence or young adulthood, is a priority for our nation. Intervening early, as soon as possible after a young adult first experiences psychotic symptoms, is important for promoting young people's mental health recovery and reducing chronic disability. While state-of-the-art interventions like Recovery After an Initial Schizophrenia Episode (RAISE) provide care for young people that improves their chance of recovery, they do not help the ~1/2 of the young people who drop-out of care. Preliminary evidence suggests that at least half of the young people initially hospitalized for a psychotic disorder do not attend their first outpatient follow-up appointment, and become "lost to follow-up" in the initial months after their hospitalization. There is a gap in the research regarding this group-we know nothing about them. Understanding what personal and contextual factors shape young people's decisions to drop-out or not drop-out of care during the critical time between an initial hospitalization for psychosis and engagement with outpatient services is immensely important. We can use this knowledge to conceptualize an intervention that appeals to them and motivates them to engage in care. This R03 proposal will generate the knowledge we need to develop a person-centered intervention targeting this crucial and unstudied moment of treatment decision-making in the lives of 24 young people with early psychosis (ages 18-30) and 24 of their self- identified key supporters (e.g., family members, romantic partners). To target an underserved and overrepresented population, 50% of the study sample will be African American. In this self-contained, prospective, ethnographic study, we will conduct an interview during their initial inpatient hospitalization, ask participants to identify a key supporter, and then follow them into the community with 1-hour interviews and 2- 3 hour ethnographic home visits at weeks 2, 4, 8, 12, and 16 (Aim 1). We will also interview key supporters at three of those timepoints. Aim 1 will enable us to collect data on a population that has never been studied. We expect ~1/2 of our sample to disengage from clinical services based on our preliminary work, which will provide us with 2 comparison groups-people who drop-out of treatment initially and people who do not. Comparing these qualitative data about treatment decision-making during this critical period between those who drop-out and those who do not, as well as their key supporters, we will be able to form a grounded theory of the personal and contextual factors that are meaningful to young people and their key supporters at this time, and how those factors shape treatment decision-making (Aim 2). This theory will provide the knowledge we need to conceptualize an age-appropriate, person-centered intervention that reduces treatment drop-out, promotes engagement, and motivates young people to envision a "pathway through care" that is meaningful for them (Aim 3), thereby helping them experience a continuity of care during this critical, early period.