Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home

Rie Wakimizu; Akemi Matsuzawa; Hiroshi Fujioka; Kaori Nishigaki; Iori Sato; Seigo Suzuki; Naoko Iwata

doi:10.3389/fped.2022.929146

Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home

Front Pediatr. 2022 Oct 24:10:929146. doi: 10.3389/fped.2022.929146. eCollection 2022.

Authors

Rie Wakimizu¹, Akemi Matsuzawa², Hiroshi Fujioka³, Kaori Nishigaki⁴, Iori Sato⁵, Seigo Suzuki⁶, Naoko Iwata⁷

Affiliations

¹ Department of Child Health and Development Nursing, Division of Health Innovation and Nursing, Faculty of Medicine, University of Tsukuba, Tsukuba-city, Japan.
² Department of Comprehensive Development Nursing, Graduate School of Health Sciences and Faculty of Medicine, Hokkaido University, Sapporo, Japan.
³ Department of Nursing, Faculty of Health Sciences, Ibaraki Prefectural University of Health Sciences, Ibaraki, Japan.
⁴ Department of Child Health Nursing, Graduate School of Nursing Sciences, St. Luke's International University, Tokyo, Japan.
⁵ Department of Family Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
⁶ Department of Pediatric Nursing, Faculty of Medicine, Tokyo Medical University, Tokyo, Japan.
⁷ Tsukuba University Hospital, Medical Liaison and Patient Support Services Center, Ibaraki, Japan.

Abstract

Background: The empowerment of families raising children with disabilities (CWD) is crucial in maintaining their health. We developed an evidence-based, family empowerment intervention program focusing on social resource utilization and reducing care burden.

Objective: This study aimed to determine the program's effectiveness in promoting family empowerment.

Methods: We compared an intervention group that started the online intervention program a week after initial evaluation and a group that received delayed intervention (waitlist-controlled group) at three time points: initial (T1), post-course (T2), and follow-up (T3). The required sample size was 52.

Results: There were 60 participants who applied to the program. One participant dropped out due to scheduling issues, and the others were assigned to either the intervention group (n = 29) or the waitlist-controlled group (n = 30). Those who responded to the baseline questionnaire (T1: 26 from the intervention group; 29 from the waitlist-controlled group) comprised the final sample. Among them, 20 members of the intervention group and 20 of the waitlist-controlled group attended all four sessions (completion rates of 77% and 69%, respectively). The attendance rate for sessions 1-4 was 94%, 89%, 81%, and 83%, respectively. The participant numbers in each session ranged from 5 to 18 per month. The baseline outcome score did not differ between the groups. The primary outcome, family empowerment, measured using the family empowerment scale (FES), was significantly higher at T2 for the intervention group than in the waitlist-controlled group and was sustained in the sensitivity analysis. The intervention group's FES, in the family relationships (FA) and relationships with service systems (SS) subdomains, increased significantly, unlike involvement with the community (SP). The intervention group experienced lower care burden and higher self-compassion, especially in the isolation and over-identification items of the self-compassion scale-short form (SCS-SF). The intervention group's FES (total, FA, SS) and SCS-SF (total, common humanity, isolation) changed significantly between T1 and T2, and all, except common humanity, were sustained up to T3; this group's FES (SP) and SCS (negative score, over-identification) changed significantly between T1 and T3. The waitlist-controlled group's FES (total, FA) and SCS (total) changed significantly and were sustained between T2 and T3.

Conclusions: The developed intervention program promotes family empowerment in families of CWD.

Clinical trial registration: This study is registered as a clinical trial in the UMIN Clinical Trials Registry (https://center6.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422, UMIN000044172).

Keywords: caregiver; children with disabilities; effectiveness verification study; family empowerment; online intervention program; quality of life; well-being.