JMIR Publications

ABSTRACT

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 is to conduct user-centered design and testing of an mHealth intervention to support early psychosis caregivers.

Methods:

We conducted a multi-phase user-centered development process including a qualitative needs assessment, prototyping, and a one-week field trial.

Results:

The study’s first phase aimed to develop Bolster design objectives through a qualitative needs assessment and prototyping. Participants (N = 21 caregivers to youth and young adults at risk for psychosis) identified psychoeducation, communication coaching, a guide to seeking services, and support for coping as areas to address. Live prototype interaction sessions with this same group resulted in multiple design objectives, including ensuring messages from the platform were “actionable” and tailored to the caregiver experience, delivering messages in multiple modalities (e.g., video and text) and eliminating a messaging-style interface. An initial version of Bolster was developed featuring: (1) lessons introducing key caregiving topics, (2) interactive modules to practice self-care or communication skills, (3) an “action plan” set of guides for common caregiving challenges, (4) links to resources and treatment listings, and (5) the ability to track changes in the affected relative’s symptoms over time. In a one-week field trial, participants were given access to Bolster for one week and completed baseline and post-test clinical assessments as well as feedback on system usability. In a one-week field trial (Phase 2), participants used Bolster most (65.9%) days they had access, and for long periods (26.64 minutes [SD = 13.61] per use day). Ten of 11 (90.9%) caregivers 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 (d = .55-.68), distress (d = 1.77), and expressed emotion (d = .52).

Conclusions:

This study is the first to our knowledge to design an mHealth intervention specifically for early psychosis caregivers. Preliminary data suggest Bolster is usable, acceptable, and promising to impact 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.