Altitudes adaptation and development: Content analysis of experiences and preferences for a digital intervention to support early psychosis caregivers in the United States

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Abstract
Purpose: Family involvement in Coordinated Specialty Care (CSC) can enhance engagement and improve outcomes for young people with First Episode Psychosis (FEP). Digital interventions can circumvent many of the access and resource barriers that prevent families from engaging. The purpose of the current study was to better understand the experiences and challenges faced by caregivers who support a young person with FEP in the United States, and to use this information to guide the adaptation and further development of a digital intervention to support caregiver health and well-being. Methods: Participants engaged in interviews and focus groups centered on their experiences supporting an adult child with FEP, connecting their relative to CSC, and their preferences for a digital intervention to support caregivers. This study used content analysis to develop themes and subthemes across interview and focus group data. Results: Eight participants participated in the interviews and focus groups. Our findings support prior research indicating caregivers of young people with psychosis need evidence-based information about psychosis and assistance in managing systemic, social, and intrapersonal challenges. Participants advocated for a program with multimedia that could be accessed anywhere and anytime, facilitated connections with other caregivers, and emphasized messages of hope and recovery. Conclusion: Interventions aiming to promote mental health and well-being for FEP caregivers in the United States should incorporate evidence-based information about psychosis specific to caregivers and their relative's recovery stage, guidance for navigating the healthcare system and privacy laws, and actionable skills related to illness management, effective communication, and self-care.
Funding Information
  • North Carolina Department of Health and Human Services (CFDA #93.958)

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