Background: Caregivers play a critical role in the treatment and recovery of youth and young adults at risk for psychosis. Caregivers often report feeling isolated, overwhelmed, and lacking in resources. Mobile health (mHealth) has the potential to provide scalable, accessible, and in-the-moment support to caregivers. To date, few if any mHealth resources have been developed specifically for this population.
Objective: The aim of this study was to conduct user-centered design and testing of an mHealth intervention to support early psychosis caregivers.
Methods: We conducted a multiphase user-centered development process to develop the Bolster mobile app. In phase 1, a total of 21 caregivers were recruited to participate in a qualitative needs assessment and respond to an initial prototype of the Bolster platform. Content analysis was used to identify key needs and design objectives, which guided the development of the Bolster mobile app. In phase 2, a total of 11 caregivers were recruited to participate in a 1-week field trial wherein they provided qualitative and quantitative feedback regarding the usability and acceptability of Bolster; in addition, they provided baseline and posttest assessments of the measures of distress, illness appraisals, and family communication.
Results: In phase 1, participants identified psychoeducation, communication coaching, a guide to seeking services, and support for coping as areas to address. Live prototype interaction sessions led to multiple design objectives, including ensuring that messages from the platform were actionable and tailored to the caregiver experience, delivering messages in multiple modalities (eg, video and text), and eliminating a messaging-style interface. These conclusions were used to develop the final version of Bolster tested in the field trial. In phase 2, of the 11 caregivers, 10 (91%) reported that they would use Bolster if they had access to it and would recommend it to another caregiver. They also reported marked changes in their appraisals of illness (Cohen d=0.55-0.68), distress (Cohen d=1.77), and expressed emotion (Cohen d=0.52).
Conclusions: To our knowledge, this study is the first to design an mHealth intervention specifically for early psychosis caregivers. Preliminary data suggest that Bolster is usable, acceptable, and promising to improve key targets and outcomes. A future fully powered clinical trial will help determine whether mHealth can reduce caregiver burdens and increase engagement in services among individuals affected by psychosis.
(©Benjamin Buck, Mary Wingerson, Erica Whiting, Jaime Snyder, Maria Monroe-DeVita, Dror Ben-Zeev. Originally published in JMIR Mental Health (https://mental.jmir.org), 30.11.2023.)