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

Abstract

BackgroundThe 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.ObjectiveThis study aimed to determine the program's effectiveness in promoting family empowerment.MethodsWe 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.ResultsThere 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.ConclusionsThe developed intervention program promotes family empowerment in families of CWD.Clinical Trial RegistrationThis 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).

The Efficacy of Internet-Based Interventions in Family-Centered Empowerment Among Children with Chronic Diseases: A Mixed-Methods Systematic Review

“…Only one study provided information about the parents’ highest level of education, with the majority having a high level of education, totalling 14 individuals. 30 In contrast, the other two had a low level of education. Overall, these three studies described FE interventions that adopted online-based models.…”

“… During the study period, is the intervention/exposure administered as intended? Score (Percentage) Wakimizu et al (2022) 30 Y Y Y N Y 4/5 (80%) Pecoraro et al (2021) 31 Y Y Y N Y 4/5 (80%) Quantitative randomized controlled trials Is randomization appropriately performed? Are the groups comparable at baseline?…”

“…The total sample of this study consisted of 199 children and 210 parents, with the population in this study including children aged 0–21 years with obesity (n=1), physical, intellectual, or developmental disabilities (n=1), chronic kidney disease (CKD) (n=1), and life-limiting illness (LLI) (such us cerebral palsy, intractable epilepsy, metabolic and genetic disorders) (n=1). Only one study provided information about the parents’ age, occupation, and highest education level, 30 with the majority of parents aged 20–59 years, most having vocational and bachelor’s degrees (47 individuals), 20 working part-time, and 16 being homemakers. Overall, the majority were non-randomized 65.24%, carried out in Europe 73.80%, interventions implemented at home 84.76%, and 100% online-based intervention models.…”

“…Additionally, video tutorials were provided on exercise types tailored to the age and physical characteristics of the children. Anthropometry BMI Increase significantly (+1.2 kg/m2) Bioelectrical impedance anal Fat Free Mass Increase significantly (+3.8 Kg) Measuring tape WC Waist Circumference does not change both groups Wakimizu et al (2022) 30 Group-based online intervention program Five month One month Every Sunday The Japanese version of FES This activity consists of 5 sessions. Session 1 (Understanding the child’s situation), Session 2 (Reflecting on the child’s and family’s situation and desires), Session 3 (Setting goals for the family and child), Session 4 (Reflecting on the activities undertaken to achieve the goals), Session 5 (small Focus Group Discussion - FGD).…”

“…Our combined findings from six studies reveal that online-based interventions in FE positively impact the total FES scores across all empowerment domains. 30–35 This study categorizes the findings according to the theme of the results, which are knowledge, availability of resources and saving time, connectedness and communication, and family management and self-confidence.…”