Healthcare for children depend on medical technology and parental quality of life in Japan.

BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary caregivers of children with medical complexity (CMC), identified using an existing registry of raising CMC aged 1-20 years and receiving reimbursements for their home-based medical care at a children's hospital. We used an exploratory cross-sectional study design and sent questionnaires to 286 parents. To clarify the characteristics of CMT and families, we compared two groups on demographics of children's and families', service utilization and parental HRQOL. The participants were categorized into the CMT and children with chronic conditions (CCC) groups, based on whether they required ventilator, suctioning, or tube feeding; had tracheostomy, or gastrostomy; or had central line or clean intermittent catheterization. RESULTS: Of the 95 children selected, 31 were CMT. The participants' characteristics, service utilization, and the parents' HRQOL were compared between the two groups. Compared to CCC, CMT were more likely to be younger, more unstable, more demanding of their caregiver's time, caused greater reductions in their caregiver's sleep time, caused heavier caregiver burden, had higher rates of unexpected hospital admissions and emergency visits, required greater care coordination, and exhibited a higher health service utilization. Parents of CMT were found to have poor mental and physical health in HRQOL. CONCLUSIONS: Improving the outcomes of parents caring for CMT requires high quality healthcare services, especially respite care for the parents, and care coordination.

Care coordination for children with medical complexity in Japan: Caregivers' perspectives.

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.

Quality of life and associated factors in siblings of children with severe motor and intellectual disabilities: A cross-sectional study.

This study examined quality of life and its associated factors in siblings of children with severe motor and intellectual disabilities in Japan. The participants were 789 siblings of children with a disability and their primary caregivers. We used the Kinder Lebensqualität Fragebogen questionnaire to assess the quality of life of siblings. The mean age of the siblings was 12.21 ± 3.07 years, and the mean quality of life score was 69.63 ± 12.55 points, which is higher than that of the general population of children of the same age. It was revealed that the following factors contributed to higher quality of life scores: a closer relationship with the child with a disability, younger age, the primary caregiver's lower care burden, later birth order of siblings (i.e., younger siblings), higher family empowerment, and female gender of siblings. The relationship with the child with a disability had the strongest influence on siblings' quality of life. Our study suggests the need for nursing interventions that focus on the whole family to enhance siblings' quality of life.

Hospital-based care utilization of children with medical complexity in Japan.

BACKGROUND: Few studies have investigated the hospital-based care utilization of children with medical complexity (CMC) in Japan. This study examined the frequency and differences in hospital-based care utilization for CMC according to the level of medical complexity (moderate and severe). METHODS: Medical records of three pediatric tertiary hospitals in one prefecture were examined in 2014. We examined the number of outpatient visits and of admissions to the hospital for CMC in the 5 years after the introduction of home medical care. RESULTS: Of 92 CMC, 55 had medical complexity that was moderate (CMC-moderate) and 37 had medical complexity that was severe (CMC-severe). The number of CMC who had medical care introduced at home had increased year by year, especially that of CMC <2 years old; the number of older CMC (i.e. 7-17 years old) had also increased in 2010-2014. The median total outpatient visits was 20 (IQR, 13-29 visits) for CMC-moderate and 20 (IQR, 17-26 visits) for CMC-severe in the first year. CMC-severe had significantly longer length of admissions in the 5 years than CMC-moderate. The number of total visits and admissions during the subsequent 4 years (from the second to the fifth year) was slightly decreased compared with the first year, but this was not significantly different. CONCLUSIONS: CMC had high utilization of hospital-based care, and consistently utilized hospital-based care in the 5 years after the introduction of home medical care. Further study is needed to examine both hospital-based and home/community-based services use.

Child deaths with persistent neglected experiences from medico-legal documents in Japan.

BACKGROUND: Few studies have examined the actual conditions of fatal neglect in Japan. The aims of this study were to investigate persistent neglect among child fatalities using medico-legal documents, and to describe the characteristics of the socio-familial background and biological data. METHODS: The current study analyzed the documents of all postmortem external examinations and autopsies in children <2 years old carried out in one prefecture in Japan from 2006 to 2011. After examining 59 autopsy cases using modified the Maltreatment Classification System, we identified six children who experienced persistent neglect as study samples. RESULTS: Three children were found in unsanitary rooms and one was left alone inside a car. In two cases, age of mother at delivery was <21 years old. Three victims had 1 year older sibling. With regard to history of use of health services, three mothers missed some prenatal care visits, and two refused to receive neonatal home visits. With regard to biological data the average weight Z score of six children was -2.22 after being adjusted to average weight for age (in months) and sex. Three children had acute or chronic undernutrition. Three victims had thymic involution considered as being due to chronic child maltreatment. CONCLUSIONS: The present collaboration between public health and legal medicine has enabled investigation of the background and biological impact of experiences of persistent neglect. A multidisciplinary system of evaluating child death is needed to identify preventable factors in order to intervene in the case of neglected children in a timely manner.

Mothers' Experiences of Care Coordination for Children with Disabilities: A Qualitative Study.

Few studies have investigated the care coordination for children with disabilities and their families in Japan. Care coordination enhances the quality of care for these children and their families. This study explores mothers' experiences of coordinated care provided to their children with disabilities and their families. We used a qualitative descriptive approach, conducting semi-structured interviews with 11 Japanese mothers/primary caregivers of children with disabilities to describe their experiences. Four main themes were identified: shared decision-making with key workers, receiving an assessment of the entire family, timely access to coordinated health care services, and a reduced psychological burden and empowerment of mothers. Our findings suggest that care coordination has multiple beneficial effects on children with disabilities and their families, including improving the outcomes. Further research should examine how high-quality care coordination can be provided for such children and their families.

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

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).

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

BACKGROUND: Families 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 intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan. METHOD: The program consists 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 is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group. DISCUSSION: The 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. TRIAL REGISTRATION: The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021.

[The current situation regarding guarantees of legal rights to social welfare and nursing care in Japan: based on an analysis of adjudications spanning the period 1960 to 2005].

PURPOSE: To clarify whether people who need social care are legally guaranteed a "right to receive nursing-care services" as a living right in Japan. METHOD: Using the database "Judicial Information System on CD-ROM" and journals which cover judicial precedents, such as "Supreme Court Reports" and "Judicial Reports", we searched for adjudications from 1960 to 2005 with 'living rights' as key words. The complete content of these adjudications was ascertained by reference to the journals. We then assessed whether a "right to receive nursing-care services" was specifically discussed in each of the adjudications by determining how the courts interpreted Article 25 of the Constitution in the verdicts and whether or not there was specific discussion of legal rights in each case. RESULTS: Of 210 adjudications extracted from the database, 23 (11.0%) specifically discussed the right to some sort of social security. No specific reference was made in the remaining 187 decisions (89.0%), and plaintiffs' claims were rejected. Whereas the "right to nursing care" was specifically discussed in no decisions before 1992, it was discussed in 4 decisions (40.0%) from 1993 onwards, resulting in plaintiffs' demands being partly granted. The content of the decisions covered issues that included anxiety about future nursing care, the practice of nursing homes of placing several elderly people in one room, ill-defined standards and low pay for home nursing-care workers, provision of nursing-care services based on the assumption that nursing care would be provided by family members, and self-determination and independence of the severely handicapped. CONCLUSION: A "right to receive nursing-care services" has not been fully guaranteed in the legal sense. However, such a right, included as a living right, is a primary right with a constitutional basis. Although this right has been specifically discussed in only a minority of adjudications, there has been a recent tendency for more emphasis. Both elderly and handicapped persons, as well as caregivers, need to raise their consciousness about "right to receive nursing-care services" as a human right. It is necessary to assess the use of services and the quality of nursing care in understanding actual needs. The development and operation of a legal system which guarantees the rights of the elderly and handicapped is absolutely imperative.

Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities.

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.

Factors associated with employment of mothers caring for children with intellectual disabilities.

OBJECTIVES: This study investigated employment, financial, and health issues of Japanese mothers with school-aged 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, college-level 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.