Perspectives on Engagement with Mental Health Services Amongst Young Adults at Clinical High-Risk for Developing Psychosis

Background and Purpose: Young adults at clinical high-risk for developing psychosis (also known as “prodromal”) face tremendous challenges reaching independence (Kelleher et al., 2011), and therefore cause heightened public health concern. Delays in treatment for psychosis lead to worse outcomes (Harris et al., 2005). While the majority of individuals experiencing psychosis also experience a prodromal period (e.g. approximately 80-90%) (Addington, 2002), few who develop a psychotic disorder receive care prior to developing psychosis. The purpose of this study is to understand engagement among young adults at clinical high-risk for developing psychosis.

Methods: Twelve in-depth interviews were conducted with young adults (ages 18 to 30) who were identified as clinical high-risk for developing psychosis by the Center of Prevention and Evaluation (COPE) Clinic at the New York State Psychiatric Institute (NYSPI), a clinic serving prodromal clients. Purposive sampling was used to recruit young adults who were currently attending the COPE clinic. Open-ended interviews typically lasted one hour and were audiotaped and transcribed. Example questions about engagement were: 1) What brought you to this clinic? 2) What messages did you receive from others about attending this clinic? Applying a grounded theory approach (Charmaz, 2006), two analysts used open coding (with some sensitizing concepts) and constant comparison on a subset of interviews (N=5). Additional transcripts were analyzed developing a codebook, adding and modifying codes as needed. Analysts utilized consensus to deal with discrepancies. The remaining cases were analyzed and discussed by three analysts. All data was coded using ATLAS.ti.    

Findings: The sample (mean age 24, 60% male, 40% female, 42% White, 25% Bi-Racial, 16.5% Black, 16.5% Hispanic) revealed that almost all of the participants had health insurance, and more than half were employed or in school. Participants were referred to the COPE clinic primarily from formal supports (e.g. psychologist), informal support (e.g. parents), and/or self-referrals (e.g. online search). A majority of the participants felt very engaged with the COPE clinic (e.g. “therapy helps me feel better”, “services tailored for me”, “ask the right questions”, “safety net”).  Barriers to engagement included access to services (e.g. transportation), the temporary nature of the clinic (e.g. clinical services for only 2 years), and feeling misunderstood (e.g. “they don’t know where I am coming from”). While some participants reported supportive messages from others about engaging with services, others reported receiving negative messages. Other themes that emerged were self-efficacy, awareness, and insight into the need for treatment. Finally, public stigma was apparent in many interviews. Some participants reported that they felt less inclined to disclose to others the reason they were receiving services from the COPE clinic because of stigma.  

Conclusions and Implications: Understanding what keeps young people engaged with services can inform interventions to raise the low rates of service engagement. Further, the findings from this study can educate social work professionals as to areas where they need to focus their engagement work. This will ensure that these young people are connected with specialty services that facilitate improvement in their mental health and functioning.