Social support needs of caregivers rearing children with severe motor and intellectual disabilities at home in Japan

BackgroundIn Japan, recently, the number of children with severe motor and intellectual disabilities (SMID) is steadily increasing. Caregivers such as parents and family members are struggling with how to live with their children at home and in the community after discharge.ObjectiveThe current study aimed to explore the social support needs faced by caregivers while rearing children with SMID in order to identify effective means of social support in Japan.MethodsWe conducted a cross-sectional survey of the primary caregivers of children with SMID at home through special-needs elementary, junior high, and senior high schools nationwide, using a self-administered, anonymous questionnaire to investigate the actual social support needs of the caregivers. All statements of social support need were coded using Krippendorff content analysis.ResultsQuestionnaire returns were obtained from 1,176 families, and the descriptions of 1,173 families were included in the analysis. The results of the analysis showed that the needs of the caregivers consisted of seven categories.ConclusionsThe social support needs expressed by the caregivers are necessary findings for Japan today, both for the soft side, such as the development of local systems and regulations to support these families, and for the hard side, such as the increase and improvement of facilities and equipment

在宅重症心身障害児の家族エンパワメントに焦点を当てたケアモデルの検証

科学研究費助成事業 研究成果報告書：挑戦的萌芽研究2015-2017課題番号 : 15K1584

発達障害児の家族を対象とした包括的エンパワメントプログラムの開発と評価

科学研究費助成事業 研究成果報告書：若手研究(A)2014-2017課題番号 : 2671305

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

ObjectivesFamily 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.MethodsWe 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.ResultsIn 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.ConclusionHealthcare 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

Effects of preoperative at-home preparation on children's behavioral outcomes in Japan

AbstractIntroductionThe objective of the study is to determine the effects of at-home psychological preparation mainly on adjustment in the aspect of children's behavior in a randomized controlled trial as an exploratory and pragmatic clinical trial.MethodsThe eligible patients were randomly assigned to either of two groups that both watched a preparation video once as outpatients in a group of other patients prior to hospitalization (“standard care”); the control group later underwent surgery without any further preparation; the experimental group watched the same video repeatedly in reference to an auxiliary booklet at home with their caregivers prior to hospitalization.ResultsNo beneficial impact of at-home preparation program was determined on the children's behavioral outcomes. However, children in the experimental group showed no higher upset in OR and no more negative behavioral changes after discharge than the controls. Over 90% of the caregivers in the experimental group expressed satisfaction with at-home preparation.DiscussionThese results suggested that at-home preparation program has no impact on the patients but resulted in high satisfaction from the caregivers in the experimental group.ConclusionAt-home preparation program using video and booklet had no beneficial impact on the behavioral outcomes of children undergoing minor surgery. However, it can be highly a desired program to prepare small children and their caregivers for surgical hospitalization

Family empowerment and quality of life of parents raising children with Developmental Disabilities in 78 Japanese families

Objectives: The families of these children experience distress both at the time of diagnosis and afterward. A top priority is to understand family empowerment, family function, and family members' quality of life (QoL) and to effectively support these families in Japan. The objective of this study was to assess the actual conditions of families living with children having DDs and to explore the factors associated with family empowerment and parents' QoL. Methods: We surveyed ninety-three parents (78 mothers, 15 fathers) from 78 families which lived with children with DDs in the capital region of Japan. We assessed two main outcomes using the Japanese versions of the following instruments: Family Empowerment Scale (FES), World Health Organization Quality of Life 26 (WHOQOL26), and other six outcomes. Correlation and multiple regression analyses were conducted. Results: No medication, cooperation with child rearing, assistance from a developmental support center, solved problems related to child rearing, and higher scores in Problem Solving contributed to higher FES scores. Higher WHOQOL26 scores were related to being a full-time housewife, higher self-esteem, no developmental support, a broad emotional support network, higher scores in Problem Solving and Role Function, and lower scores in Affective Reaction and General Function. Conclusions: We revealed that family empowerment and QoL of parents rearing children with DDs in Japan were affected by various subscales of family function and other family attributes. Effective interventions for improving family empowerment and QoL should be researched in the future. Keywords: Developmental disabilities, Family empowerment, Japan, Multiple regression analysis, Quality of life, Social suppor

Development of family care practice model focused on the empowerment of the family rearing children with SMID

科学研究費助成事業 研究成果報告書：挑戦的萌芽研究2013-2014 課題番号：2567096

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. Keywords: Caregivers, Child care, Disabled children, Family empowerment, Home nursing, Intellectual disability, Japan, Social support

在宅で障害児をケアする養育者に向けた家族エンパワメントプログラムの開発と効果検証

科学研究費助成事業 研究成果報告書：基盤研究(B)2018-2021課題番号 : 18H0309