Abstract
BackgroundFamilies raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online program development and interventional study focusing on the empowerment of families raising children with disabilities who live at home in Japan.MethodThe program consisted of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study was a non-randomized, waitlist-controlled trial. It compared the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants were allocated to the early or delayed group in the order of their applications. The main outcome was family empowerment. Other outcomes are the caregiver burden, awareness of the use of social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timing of the online surveys was as follows: the initial evaluation (Time 1 [T1]) was conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) was conducted immediately (within one week) after the early group had completed all four sessions (four weeks) of the program. Follow-up evaluation (Time 3 [T3]) was conducted four weeks after the post-intervention evaluation. This timing was the same in the delayed group, but the delayed group attended the program after a four-week waiting period, compared to the early group.DiscussionThe intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program.Clinical trial registrationThe UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021. https://upload.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422