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

Rie Wakimizu,Hiroshi Fujioka,Keiko Yamaguchi

doi:10.4236/health.2016.89083

Abstract

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.

Highlights

In Japan, to support children with Severe Motor And Intellectual Disabilities (SMID) and their families, sinceHow to cite this paper: Wakimizu, R., Yamaguchi, K. and Fujioka, H. (2016) Roles and Hopes of Family Members Living with Severe Motor and Intellectual Disabilities (SMID) Children in Japan
How to cite this paper: Wakimizu, R., Yamaguchi, K. and Fujioka, H. (2016) Roles and Hopes of Family Members Living with SMID Children in Japan
Benefits like “they are able to live with their families” and “they do not have to commute to the hospital”, are emphasized, complaints such as “we have to wake up in the middle of the night for his/her care”, “we cannot go on vacation”, and “we cannot pay attention to other siblings” were heard, revealing great mental and physical burdens on household members [5]

Summary

Introduction

In Japan, to support children with Severe Motor And Intellectual Disabilities (SMID) and their families, sinceHow to cite this paper: Wakimizu, R., Yamaguchi, K. and Fujioka, H. (2016) Roles and Hopes of Family Members Living with SMID Children in Japan. In Japan, to support children with Severe Motor And Intellectual Disabilities (SMID) and their families, since. (2016) Roles and Hopes of Family Members Living with SMID Children in Japan. Of the approximately 40,000 children with SMID in Japan, about 70% live at home [3]. Japan has been transforming into a society of nuclear families [8], and the same can be said for families that have children with SMID at home. In this environment, what kind of care are nuclear families in Japan giving their children with SMID? What kind of care are nuclear families in Japan giving their children with SMID? What kind of lifestyles are they themselves leading? What does cooperation and role division within families look like?

Methods

Results

Discussion

Conclusion