Department of Nursing Science, University of Turku, Turku, Finland.
Xiangya School of Nursing, Central South University, Changsha, Hunan, China.
J Med Internet Res. 2021 Apr 23;23(4):e25480. doi: 10.2196/25480.
Schizophrenia is a severe mental illness that burdens both patients and caregivers.
The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course.
A convergent, parallel, mixed methods study design was used. First, caregivers' engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course.
A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, Orientation (3465 log-ins), and the lowest number of log-ins was recorded for the Daily life module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver's own well-being, relationship with the person with SSD, and experience of health care services.
The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals.
精神分裂症是一种严重的精神疾病，给患者和照顾者都带来了沉重的负担。
本研究旨在检验针对精神分裂症谱系障碍（SSDs）患者照顾者的基于网络的心理教育课程的可行性，并根据照顾者在基于网络的课程中所产生的材料来描述他们与 SSD 患者共同生活的体验。
采用了一种收敛并行混合方法设计。首先，定量评估了照顾者对课程的参与度。其次，使用定量和定性方法评估了课程反馈概述。最后，通过对照顾者在基于网络的课程中所写材料进行主题分析，对照顾 SSD 患者的体验进行了定性分析。
共有 30 名照顾者参加了这项研究和基于网络的心理教育课程。不到三分之二（18/30，60%）的人完成了课程。内容最常记录在第一模块“入门”（3465 次登录），记录最少的是“日常生活”模块（1061 次登录）。对课程的反馈各不相同；超过一半（10/17，59%）的照顾者认为内容非常好或好，大约一半（9/17，53%）认为网站布局良好，只有 6%（1/17）认为网站的可用性较差，没有人认为很差。从照顾 SSD 患者的经历报告中，形成了 3 个主题：照顾者自身的幸福感、与 SSD 患者的关系以及对医疗保健服务的体验。
针对与 SSD 患者共同生活的照顾者的基于网络的心理教育课程似乎特别适合那些作为照顾者经验较少的人。在未来，应更多地考虑规划以及与特定目标群体需求、课程内容、实际安排和日程安排相关的方面。此外，虽然照顾者可以通过不同的方式改善自身的幸福感，但他们需要来自医疗保健专业人员的定期支持和合作。
