The study of cognizance, emotion, and experience in the hospital for parents of Trisomy 18

本調査は、1)18トリソミーの子どもの親の18トリソミーに関する説明内容に対する認識と、18トリソミーと知った時の感情と行動、2)子どもが入院している間親はどのような辛い体験をし、何によって支えられていたのか、3)これらの体験を通して親はどのような医療を望んでいるのかを明らかにすることを目的とした。調査対象は18トリソミーの会会員の70組の親であり41組から返答があった(回収率58.6%)、調査方法は半構成的質問紙とし、分析方法は内容分析とした。調査時点の子どもの生活状況は、41人中28人(68.3%)が死亡で最も多く、調査時点の子どもの生存期間は、23人(56.1%)が1ヶ月以上1年未満で最も多かった。18トリソミーの子どもの親は、18トリソミーについて、、と認識していた。そして説明の後は、、という行動を示した。入院中の辛かった体験は、、、、、、、だった。また親を支えた体験は、、、、、だった。親が望む18トリソミーに関する医療ケアとは、最悪の予測だけでなく、残された可能性や希望も説明すること、子どもに関する詳細な説明をした上で、説明Purposes of this qualitative study were to clarify the cognizance and emotion of parents when they knew that their child was trisomy 18, the bitter and supportive experiences for parents while their child was in hospital, and what parental expectations were for medical care. Subject population was 41 members(58.6%) made up of 70 parent(s) who had a child with trisomy 18. The cognizance of parents when they knew that their child wa trisomy 18 were: chromosome abnormality, disability, and short-lived. The responses of parents after they knew about their child were: self-reproach and to deny themselves, isolation and observing their peers, and groping for their way of life as parents. Bitter experinces while their child was in the hospital were: seeing the pitiful sight of their child, feeling incomplete as parents, facing up to the reality of their child's disability and death, poor and imperfect medical service, hopeful look of other children and mothers, looks and comments from their surroundings, life without a husband, and nobody talks about their experience. Supportive experiences for parents during their child's hospital stay were: child's living life to the full, release from isolation and sharing experiences, being a parent for their child, positive and kind aspects of their surroundings, affectionate care, and the patient's siblings. Parents were impatient for medical care to describe not only the worst possibility, but also, any hopeful possibilities. Additionally, parents needed care and follow-up after talking about their child's severe condition