JMIR Publications

ABSTRACT

Background:

First-episode psychosis (FEP) imposes a substantial burden not only on the individual affected but also on their families. Given that FEP usually occurs during adolescence, families overtake a big part of informal care. Early family interventions, especially psychoeducation, are crucial for informal family carers to best support the recovery of their loved one with FEP and to reduce the risk of a psychotic relapse as much as possible, but also to avoid chronic stress within the family due to the burden of care. Digital health interventions offer the possibility to access help quicker, use less resources and improve informal family caregiver outcomes, e.g., by reducing stress and improving carer quality of life.

Objective:

This review aimed to systematically identify studies on digital health interventions for informal family caregivers of people with FEP and to describe and synthetize the available literature on user experience, as well as the effectiveness of such digital applications on the following clinical outcomes: perceived caregiver stress, expressed emotion, and parental self-efficacy.

Methods:

A systematic search was carried out across four electronic databases. In addition, reference lists of relevant studies were hand-searched. This review aimed to include only primary studies on informal family caregivers, who had to care for a person with FEP between 15-40 years of age and a diagnosis of FEP with onset of observed symptoms within the past 5 years. All types of digital interventions were included. This systematic review is aligned with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) 2020 guidelines.

Results:

The search identified seven studies that reported on user experience or effectiveness of digital health interventions on perceived caregiver stress, expressed emotion, and parental self-efficacy, including 377 informal family FEP caregivers across trials. Digital health interventions – web-based, video conferences, and mHealth – were well accepted and perceived as relevant, easy to use, and helpful by informal family FEP caregivers. Psychoeducational content was rated as most important across studies. Perceived caregiver stress, expressed emotion, and parental self-efficacy improved in all studies that reported on these clinical outcomes.

Conclusions:

The results of this review suggest that digital health interventions aimed at informal family caregivers of individuals with FEP can improve relevant clinical outcomes, with participants reporting a positive user experience. However, traditional in-person care partially led to better results in perceived caregiver stress and parental self-efficacy than the digital intervention. Therefore, while digital interventions present a promising approach to alleviate the burden of care and improve informal family FEP caregiver outcomes, more studies with powered experimental designs are needed to further investigate the effectiveness of such applications in this population. Clinical Trial: Not applicable.