Mothers' experience over death of their children with severe motor and intellectual disabilities and having lived at home and social concerns about those mothers.

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  • 在宅で生活する重症心身障害児（者）の死をめぐる母親の体験と社会的課題
  • ザイタク デ セイカツ スル ジュウショウ シンシン ショウガイジ(モノ)ノ シ オ メグル ハハオヤ ノ タイケン ト シャカイテキ カダイ

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Abstract

This study aimed to clarify mothers' experience and the social concerns over death of their children with severe motor and intellectual disabilities (SMID) who having lived at home, and to discuss how to support such families. The date obtained from interviews with six mothers having lost their children more than three years before were qualitatively and inductively analyzed. This study was approved by the ethics committee of the institution one author belonged to. As a result, the following five categories were extracted: <ambivalent feelings and fear about child's death>, <feelings of isolation and loneliness>, <transition from long-term lifestyle concentrating on child's care and nursing>, <work loss and job hunting activities> and <wish to do something for the society for being supported and self-actualization>. The children with SMID in this study had managed to live at home together with their families for five years or more under home-based medical care and other support. The experiences over the children's death uncovered by the mothers in this study were found to support the process of mothers' grief care reported by the previous research. The important finding of the study was the fact that some mothers had social problems after their children's death, as indicated by the category of <work loss and job hunting activities>. In some cases, the mothers got anxious about financial difficulty and started job hunting activities for family finances and savings for old age. There are few studies relating to work loss of mothers having children with SMID. In future, the economical aspect should also be considered when discussing the support for families caring the children with SMID at home.

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