Digital Health Interventions for Informal Family Caregivers of People With First-Episode Psychosis: Systematic Review on User Experience and Effectiveness

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 caregivers 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, for example, by reducing stress and improving caregiver quality of life. Objective: This study aimed to systematically identify studieson digital health interventions for informal family caregivers of people with FEP and to describe and synthesize the available literature on user experience, as well as the effectiveness of such digital applications on the clinical outcomes, consisting of (1) perceived caregiver stress, (2) expressed emotion, and (3) parental self-efficacy. Methods: A systematic search was carried out across 4 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 fora person with FEP between 15 years and 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 7 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, videoconferences, and mHealth-were well accepted and perceived as relevant, easy to use, and helpful by informal family FEP caregivers. Psychoeducational content was rated as the 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, for some interventions reviewed, specialized in-person family care outperformed the digital intervention and partially led to better results in perceived caregiver stress and parental self-efficacy. Therefore, while digital interventions present a promising approach to alleviate the burden of care and improve informal family FEP caregiver outcomes, more studies with well-powered experimental designs are needed to further investigate the effectiveness of such applications in this population.