在宅侵襲的人工呼吸療法を行う筋萎縮性側索硬化症患者が現在抱える困難と要望の内容と意味―前向きに生きる力Hopeとの関連から

Current Difficulties, Desires and Their Meanings in Ventilator-dependent Amyotrophic Lateral Sclerosis Patients Living at Home in Japan：The Relationship with Hope as an Indicator of a Will to Live

要旨

　目的：在宅侵襲的人工呼吸療法を行う筋萎縮性側索硬化症患者が現在抱える困難と要望の内容を把握し，前向きに生きる力Hopeとの関連からこれらの意味づけを行うこと．

　方法：面接調査の結果をもとに作成した質問紙を用いた無記名配票調査を実施し，121ケースを分析対象とした．HopeレベルはHerth Hope Index尺度を用いた．

　結果：現在抱える困難は幅広く，精神的・霊的苦悩，身体的苦痛および社会的困難に関するものであった．8割以上の患者が抱えかつ低いHopeと関連をもつ具体的困難は，意思表出困難，家族の介護負担や周囲の人への重荷意識などの精神的・霊的苦悩に関する内容が多くを占め，身体的苦痛に関する内容は同一体勢による倦怠感であった．すべての患者から何らかの要望が表出され，8割以上の患者が，自宅での生活の継続，治療法の確立，家族の介護負担の軽減といった，高いHopeとは関連しない生活の基盤づくりを要望した．

　結論：患者支援は，多くの患者が抱える困難と要望への支援に加えて，Hopeを維持・回復するという観点からも，Hopeとの関連をもつ困難の軽減・除去および要望の実現を目指すことが重要かつ効果的であること示唆された．

Abstract

　Purpose: To investigate the current difficulties, desires and their meanings in amyotrophic lateral sclerosis patients who depend on tracheostomy invasive positive pressure ventilation at home. Difficulties, desires and meanings were assessed in relationship to hope as an indicator of a will to live.

　Method: We performed interview surveys, then used the results to craft a questionnaire that was mailed to potential respondents. We obtained valid responses from 121 anonymous subjects for the written survey. The level of hope was assessed using the Herth Hope Index (HHI), which measures desire to live and meaningfulness of life.

　Results: Most patients suffered multiple kinds of daily emotional/spiritual, physical and social difficulties. Eighty percent of patients suffered frustration due to: difficulty communicating, fear that both family's burden of care and surrounding's burden, and physical pain due to remaining in the same physical position for prolonged periods of time all of which correlated with lower levels of hope. All patients described desires in some form. Eighty percent of patients described desires to: live at home, have a cure for ALS and decrease the burden of care on their families. These factors didn't correlate with higher levels of hope.

　Conclusion: These results show that care should focus on coping difficulties and desires, not only which most patients describe, but also which correlated with the levels of hope. This double-pronged approach has the potential to help these patients living at home maintain or recover a life-sustaining sense of hope.