ターミナル期にある小児がんの子どもを抱える家族の体験 : 緩和ケアに立脚した看護援助指針の作成に向けた看護師に対する面接調査

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  • EXPERIENCES OF FAMILIES OF CHILDREN WITH CANCER AT TERMINAL STAGE: INTERVIEWS TO NURSES FOR DEVELOPMENT OF PALLIATIVE NURSING GUIDELINES
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  • Original Article

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本研究の目的は,ターミナル期にある小児がんの子どもを抱える家族の体験とその影響要因を明確にし,看護援助指針の枠組みを考察することであった。小児関連病棟/緩和ケア病棟看護師,訪問着護師計13名に,ターミナル期にある小児がんの子どもと家族1事例の想起に基づく半構造的面接を実施し,以下の結論を得た。1.家族の体験として【局面1 子どもの疾患・病状の受容と今後の治療の方向性の決定】【局面2 治療,看取りの場の移行】【局面3 子どもと家族の希望実現への志向と奮闘努力】【局面4 子どもの身体状態の増悪と身体的苦痛の増強】【局面5 子どもの死期の接近】の5局面が抽出され,その形相は多様であった。また,家族の体験としての【局面4 子どもの身体状態の増悪と身体的苦痛の増強】は,他の局面と混在することが多かった。2. 家族の体験の状況的影響要因は『子どもと家族が希望を実現できたか否かとその内容』『希望実現の時期』であり,これらの基幹となる影響要因は『症状コントロール状況』であった。また,家族の体験には『家族の準備性』も影響していた。3.家族の体験の形相に応じた個別的・系統的看護援助を展開することが重要であり,子どもと家族の希望実現を支える看護援助,子どもの症状マネジメントを促進する看護援助,家族の準備性の向上を促す看護援助が,緩和ケアを必要とする小児がんの子どもと家族に対する看護援助指針の主要な枠組みの構成要素として位置づけられた。

The purpose of this study is to explore the experiences of families of children with cancer at terminal stage and the effect of those experiences on families, and to develop a framework for palliative nursing guidelines for Japanese children with cancer and their families. Qualitative data was collected from thirteen nurses who practiced in pediatric units, palliative care units, and nursing homes or clinics. Participants were asked to remember one child with terminal stage cancer and their families, and semi-structured interview for 1-2 hours was conducted. The following results were obtained: 1) Five significant situations of families experiences: [1] Acceptance of diagnoses or disease conditions and decision-making on a course of treatment; [2] Change of treatment location; [3] Increased passion to realize the hopes of both child and family and effort to strive to meet those hopes; [4] Negative changes in child's physical conditions and distresses; [5] Imminent death of the child. Combinations of each situation were diverse, and almost all combinations contained situation [4]. 2) Indirect effects on families' experiences included "whether hopes of both child and family are realized", and/or "a period of fulfilling their hopes". "The child's physical symptom control" was a central effect. "The readiness of the family" also affected the families' experiences with childhood cancer. 3) These findings suggest that it is necessary to have nursing interventions that provide individual and systematic involvement according to the circumstances of families' experiences. Frameworks of palliative nursing guide-lines for children with cancer and their families need to address the fulfillment of the hopes of child and family, an increase readiness of the family, and the improvement of symptom management for the child with cancer.

source:Journal of Chiba Academy of Nursing Science

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