学童期の先天性心疾患児における母親の養育の様相

Aspects of Mother's Pareting of School-Age Children With Congenital Heart Disease

要旨

　目的：学童期の先天性心疾患児における母親の養育の様相を明らかにする．

　方法：在宅で養育する保護者21 名に半構造化面接を実施し，内容を分析した．

　結果：「体調面について常に不安を抱えている」，「体調管理の正解がわからない」，「体調管理をする上で自分なりの判断基準がある」，「子育ての範疇を越えた役割がある」，「子どもの世話に孤軍奮闘する」，「子どもの教育を保障する」，「自分の暗い気持ちに折り合いをつける」，「自立に向けた準備をする」，「心疾患をもつ子どもの豊かな人生を願う」，「日常の中に嬉しさを感じる」，「周囲の支援を受ける」の11 のテーマが抽出された．

　結論：子どもの医療・福祉・教育全般に渡る調整やサポートを親が一手に担い孤軍奮闘する様相が明らかとなり，包括的に支援する体制構築の必要性が示唆された．

　Aims: This study clarified the aspects of maternal care of school-age children with congenital heart disease.

　Methods: Semi-structured interviews were conducted with 21 parents providing home care for their children, and the contents were analyzed.

　Results: A total of eleven themes emerged from the interviews: "having anxiety about child's physical condition everytime," "lack of clarity regarding the proper management of the child's condition, " "having personal decision-making criteria for managing the child's condition, " "assuming roles beyond conventional parenting," "working hard alone in providing child care," "coming to compromise for own feeling," "securing child's education," "preparing for child's independence," "wishing for a fulfilling life for a child with heart disease," "feeling happiness in daily life," and "receiving support from others."

　Conclusions: The findings revealed that parents single-handedly undertake the comprehensive coordination and support across all aspects of their children's medical care, well-being, and education, and endure struggles alone. These findings underscore the necessity for a system that provides holistic support to parents raising children with congenital heart disease.