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.

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.

Roles and Hopes of Family Members Living with SMID Children in Japan

The number of children with Severe Motor and Intellectual Disabilities (SMID) receiving medical treatment/recovering at home is rising yearly. Although benefits of this care are emphasized, the stress and duties of family members in the household are extremely great, especially because Japan is becoming a society of nuclear families. In this study, we described the lifestyles of nuclear families providing in-home medical care for children with SMID, focusing on family members’ roles. Roles of mothers, fathers, and siblings of children with SMID were summarized from semi-structured inter-views. As a result, for “the roles of each family member living with a child with SMID”, mothers had five roles, fathers seven, and siblings five. For “the hopes of each family member living with a child with SMID”, parents desired the whole family collaboration in care for children with SMID, and as caregivers, parents’ common thoughts included wanting siblings in order to help care for the child with SMID and wanting siblings to treasure their own lives. Siblings wanted their mother to have some time for rest and expected their fathers to have two main roles. They also expected their grandparents and other siblings to fulfill roles.