侵襲的人工呼吸器を装着した筋萎縮性側索硬化症患者の病い経験―ライフ・ライン・メソッドを用いた心理的状態のたどる過程と関連要因

The Illness Experience of Amyotrophic Lateral Sclerosis(ALS) Patients under Tracheostomy Invasive Positive Pressure Ventilation(TPPV): Using the Life-Line Method to Study Changes in Psychological State and Related Factors

要旨

　目的：侵襲的人工呼吸器を装着した筋委縮性側索硬化症患者の病い経験について，ライフ・ライン・メソッドを用いて心理的状態のたどる過程と関連要因を明らかにすること．

　方法：50名の患者を対象に質問票調査と半構造化面接調査を行った．

　結果：心理的状態は発症後共通して悪化するが，その後は回復に転ずる者と悪化・低迷し続ける者とに分かれ，回復に転じた者の中には一部再び悪化する者も見られた．心理的状態を悪化させる要因と回復させる要因は，【身体症状・身体障害】を主軸とし，【侵襲的人工呼吸器装着・決断】【病気・診療】【先行き】【対人関係】【役割遂行】【経済面】【生活面】の8領域からなる一部対照的内容のそれぞれ計17個のカテゴリーが抽出された．悪化要因が除去・軽減され回復要因が新たに創出・増強されながら心理的状態は回復に向かっていた．新たに回復要因が創出されても悪化要因の増強が大きい場合は回復が阻害された．

　結論：発症後，複数の苦悩により病いとともに生きる人生・生活が崩壊するが，人的・物的・社会的環境との遭遇や対処経験を経ながら人生・生活を再構築していく過程が示された．患者への具体的支援策を提示した．

Abstract

　Purpose: We used the life-line methodology to elucidate the illness experience studying psychological changes and related factors in ALS patients under TPPV.

　Methods: Fifty ALS patients under TPPV participated through questionnaires followed by semistructured interviews.

　Results: The psychological state of all participants deteriorated after onset, but this state persisted in some while others experienced subsequent improvements. Of these, some participants experienced a second deterioration of their psychological state. Positive and negative factors influencing psychological state were grouped into seventeen categories in eight areas, some of which were in opposition to each other. These consisted of the primary area of "physical symptoms and disabilities," as well as "use of TPPV and associated decisions," "illness and medical care," "life prospects," "personal relationships," "role performance," "economic issues," and "lifestyle issues." Participants who were able to eliminate or mitigate negative factors while increasing positive factors experienced improvements in their psychological state, while those with significantly increasing negative factors were unable to make improvements even in the presence of new positive factors.

　Conclusion: All participants experienced major life breakdowns according to multiple factors following onset. However, some exhibited the process of life-reconstruction as they navigated physical, medical, and social environments. These results suggest concrete measures toward improving quality of life for ALS patients.