神経難病とともに生きる長期療養者の病体験：苦悩に対する緩和的ケア

Experiences of Individuals Living with Neuromuscular Illness in Long Course：Palliative Care for Their Psychological Distress

要旨

　本研究は, 神経難病の長期療養者の発症から病状・生活障害が重度にいたるまでの病体験を明らかにし, 神経難病とともに生きる療養者の苦悩を緩和するための支援方法を検討することを目的に, 発症から10年以上経過した在宅神経難病療養者・家族9組を対象に, 半構成的面接を行い質的帰納的に分析した. 結果, 療養者の苦悩は6領域12カテゴリが抽出された. 身体症状・生活障害領域は【症状のわずらわしさ】【生活障害による苦痛】【自分で自分のことができない苦痛】の3つから構成され, これらから他の苦悩が派生していた. 一方, 療養者の支えとして【症状のコントロール】【保持されている身体機能への感謝】をはじめ, 苦悩の領域と対比する10カテゴリが抽出された. 療養者の心的状態は, これら苦悩の重さと支えとの間で揺れ動くシーソー関係にあることが明らかになった. 療養者のかかえる苦悩の緩和的支援として, 1)身体面の苦痛や障害への優先的な働きかけ, 2)患者の思いに寄り添ったケア提供, 3)苦悩を支えに転換, および支えを発見・支持する関わりが示唆された．

Abstract

　Progress in medical technology and treatment has led to individuals with progressive neuromuscular illnesses surviving for longer periods of time. These patients may experience various distresses. In order to facilitate palliative care for them, the purpose of this study was to identify the experiences of in-home care patients living with progressive neuromuscular illnesses during long course. Data were obtained from semi-structured interviews with nine sets of patients and their families. A qualitative induction analysis was applied to extract domains and categories of their illness experiences.

　Six domains with twelve categories of psychological distress of the patients were identified. The domain《somatic symptoms and difficulties in their daily lives》seemed to lead to the other categories of psychological distresses. The following ten categories were extracted as reflecting the mental support of the patients: [symptoms management], [gratefulness toward being able to perform some physical functions], [renewed spirits in facing up to their illness], [achieving their roles within their families], [hope], [sense of relief derived from medical services], [gratitude for the thoughtfulness of their families], [gratitude for the consideration of others], [religious beliefs] and [unconquerable personality]. It became evident that the psychological state of the patients fluctuates between the weight of distress and the mental support that they feel. This study suggests that nurses should precede direct approaches towards resolving somatic symptoms and difficulties in their daily lives. Then we should work together with patients and their family to find mental support, and to transform psychological distress into mental support as means of palliative care.