TITLE:
Roles and Hopes of Family Members Living with SMID Children in Japan
AUTHORS:
Rie Wakimizu, Keiko Yamaguchi, Hiroshi Fujioka
KEYWORDS:
Children with Severe Motor and Intellectual Disabilities (SMID), Family Life, Interfamilial Roles, Family Empowerment, Japan
JOURNAL NAME:
Health,
Vol.8 No.9,
June
8,
2016
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.