Institute of Public Health, Charité - Universitätsmedizin Berlin, Berlin, Germany.
Department of Health Care Management, Technische Universität Berlin, Berlin, Germany.
JMIR Ment Health. 2024 Nov 28;11:e63743. doi: 10.2196/63743.
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.
This study aimed to systematically identify studies on 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.
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 for a 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.
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.
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.
PROSPERO CRD42024536715; https://tinyurl.com/bdd3u7v9.
首发精神病（FEP）不仅给患者个人带来了巨大的负担，也给他们的家庭带来了巨大的负担。鉴于 FEP 通常发生在青少年时期，家庭承担了大部分非正式护理。早期的家庭干预措施，特别是心理教育，对于非正式家庭照顾者来说至关重要，因为这有助于他们最好地支持患有 FEP 的亲人康复，并尽可能降低精神病复发的风险，同时也避免因照顾负担而导致家庭长期承受慢性压力。数字健康干预措施提供了更快获得帮助、使用更少资源和改善非正式家庭照顾者结果的可能性，例如，通过减轻压力和提高照顾者的生活质量。
本研究旨在系统地确定针对 FEP 患者非正式家庭照顾者的数字健康干预措施研究，并描述和综合现有文献中关于用户体验的信息，以及此类数字应用在临床结果方面的有效性，包括（1）照顾者感知压力，（2）表达的情感，和（3）父母自我效能感。
对 4 个电子数据库进行了系统搜索。此外，还对相关研究的参考文献进行了手工搜索。本综述旨在仅纳入针对非正式家庭照顾者的原始研究，这些照顾者必须照顾年龄在 15 岁至 40 岁之间且发病症状在过去 5 年内观察到的 FEP 患者。纳入了所有类型的数字干预措施。本系统综述符合 PRISMA（系统评价和荟萃分析的首选报告项目）2020 指南。
搜索共确定了 7 项研究，这些研究报告了数字健康干预措施对照顾者感知压力、表达的情感和父母自我效能感的影响，包括 377 名接受 FEP 治疗的非正式家庭照顾者。数字健康干预措施（基于网络的、视频会议和移动健康）得到了非正式家庭 FEP 照顾者的广泛接受和认可，他们认为这些干预措施相关、易于使用且对他们有帮助。心理教育内容在所有研究中均被评为最重要的内容。所有报告这些临床结果的研究都表明，照顾者感知压力、表达的情感和父母自我效能感得到了改善。
本综述的结果表明，针对 FEP 患者非正式家庭照顾者的数字健康干预措施可以改善相关的临床结果，参与者报告了积极的用户体验。然而，对于一些经过审查的干预措施，专门的家庭护理效果优于数字干预措施，并且在照顾者感知压力和父母自我效能感方面部分导致了更好的结果。因此，虽然数字干预措施为减轻照顾负担和改善非正式家庭 FEP 照顾者的结果提供了有前途的方法，但需要更多具有强大实验设计的研究来进一步调查此类应用在该人群中的有效性。
PROSPERO CRD42024536715；https://tinyurl.com/bdd3u7v9。
