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What are the decision-making needs for young adults with early psychosis receiving coordinated specialty care?

Results from a qualitative study suggest that decision support needs to be extended beyond medication-related decisions for young adults with early psychosis receiving coordinated specialty care (CSC). The study identifies ways in which decision-making can be supported in order to overcome decision-making barriers and suggests that patients within a CSC program can help and support each other in ways that CSC providers cannot.  

CSC programs can successfully improve outcomes in young adults with early psychosis in the US. However, many young adults fail to benefit from these services due to high rates of service disengagement during the first several months of treatment. Although decision support interventions can be effective for increasing engagement, few interventions are available for adults in CSC programs, and those that are tend to focus on medication-related decisions.

many young adults fail to benefit from these services due to high rates of service disengagement during the first several months of treatment

A qualitative study was designed to identify the treatment decision-making needs of young adults during the first 6 months of a CSC program. Patients were grouped according to their level of service engagement (i.e. below average, average, above average) and interviewed using a qualitative interview guide based on the Ottawa Decision Support Framework. Data have so far been analyzed for the first 3 participants enrolled in the study (2 average engagers and 1 below-average engager).

Patients felt the most difficult decisions related to treatment goals and whether to participate in specific aspects of the CSC program

Decision points

Patients felt the most difficult decisions related to treatment goals (how to use the CSC program to reach goals, whether to ask for help with work/school goals, and whether to pursue employment or education first). Other difficult decisions included whether to participate in specific aspects of the CSC program (i.e. whether to participate in a multi-family group, whether to start therapy, and whether to participate in CSC program social activities), treatment-related decisions (whether to start, switch or stop medications), and whether to stay in the CSC program.

Barriers to decision-making

Barriers to decision-making included poor therapist availability, anxiety about what the program has to offer, ambivalence about time investment, personal identity issues, environmental issues (bad weather), not feeling well, feeling pressure to make decisions, lack of motivation, feeling indecisive, and feeling conflicted about two valued options.

Strategies to overcome decision-making barriers

Decision-making facilitators include discussion of preferences, provision of resources, establishing a back-up plan, emotional support, hearing about other personal experiences, social comparison (comparing individual patients to other patients in the CSC program), friendships within the CSC group, provision of logistical information (information about events etc.), time alone to reflect, consistent encouragement, instrumental support (e.g. driving the patient to and from appointments), and exploring options, benefits, and risks.

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