Objectives Family caregivers raising children with severe motor and intellectual disabilities (SMID) experience the enormous burden of care. The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families. The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan. Methods We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools. We assessed the main outcomes using the Family Empowerment Scale (FES). We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment. Results In total, 1362 primary caregivers were included in our study. Our results show that factors contributing to high FES scores are higher age of the primary caregiver, higher education, greater recognition of regional support, lower childcare burden, higher utilization of home visit services, higher usage of a childcare institution, higher household income, and stronger family bonding. Conclusion Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education, low household income, high childcare burden, and fragile bonding with the family. Second, they should encourage such families to use regional support resources for childcare. That is, policy makers should consider ways to promote home visits and institutional services for the care of children with SMID, aiming especially for the provision of well-coordinated care and services.

Objectives: This study investigated employment, financial, and health issues of Japanese mothers with schoolaged children with disabilities, and factors associated with participants' employment. Methods: A survey was conducted with 243 Japanese mothers with children aged 6 to 18 years old enrolled in a Special Education Needs School for intellectually disabled children. The mothers' employment, income, health, and time spent caregiving were compared with those of other Japanese mothers using population data. Multiple logistic regression analysis was conducted to identify factors associated with the mothers' employment status. Results: Participants showed a lower employment rate (49%) compared with the average rate (71%) among Japanese mothers with children aged between 6 and 18 years old who lived in the same region. Over half (57%) of unemployed mothers expressed a desire to work. About 62% of mothers belonged to a lower income group, compared to 33% of Japanese families rearing children. The mothers' single-parent status, good health, collegelevel education, use of childcare services, and children's age were positively associated with paid employment. In particular, mothers' good health was strongly associated with their paid employment. Conclusion: Mothers caring for children with disabilities showed lower workforce participation and lower income than other Japanese mothers. The majority of unemployed mothers showed a desire for paid employment. Further maternal health care and social support are needed to support these mothers' workforce participation.

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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).

Background Little is known about the provision of care coordination to children with medical complexity (CMC) and their families in Japan. The aim of this study was to describe provision of care coordination and explore the factors associated with quality of care coordination for Japanese CMC and their families. Methods We used an exploratory cross‐sectional study design. Participants were recruited at a children's hospital located in one prefecture, Japan. Primary caregivers raising children aged between <1 and 20 years and receiving reimbursements for their home‐based medical care at a children's hospital were eligible to participants in this study. The study examined the relationship between parents' ratings of care coordination as ‘adequate,’ ‘inadequate’ or ‘not received’ and characteristics of children, parents, and families. Results Ninety‐nine parents caring for CMC were included in the analysis. Of those, 22.2% reported their child had a care coordinator. Caregivers were divided into three groups depending on the quality of care coordination: Group 1 reported adequate care coordination; Group 2 reported inadequate care coordination; and Group 3 had no need for care coordination. We compared the socio‐demographics of children, parents and families, their service use and the health‐related quality of life (HR‐QOL) and caregiver burden scores of parents across the three groups. The parents' free time, access to timely care for children and service satisfaction were positively associated with adequate care coordination for CMC and their families. Conclusions Providing adequate care coordination for CMC and their families is essential for access to timely services and more positive psychological health of parents. High quality care coordination for CMC and their families is urgently needed in Japan.