臥床生活以前のパーキンソン病療養者の配偶者が体験する困難

Difficulties Experienced by Spouses Caring for Their Partners with Parkinson's Disease before They Become Bedridden

要旨

目的：臥床生活以前のパーキンソン病療養者の配偶者（以下，配偶者）が体験する困難を明らかにすることである．

方法：10名の配偶者に半構造化面接を行い，質的記述的に分析した．

結果：配偶者は，【捉えどころのない難病に動揺し】ながらも，【揺れ動く症状と向き合おうと努めて】いった．そして，【夫婦で培ってきた歴史があるから今の生活を大切にしたい】と願うが，やがて【捉えきれない症状に翻弄されて】いった．また，【一足先に老いていくかのような療養者との生活を心配して】おり，【症状に翻弄される夫婦を誰かに支えて欲しい】と願っていた．

結論：本研究の配偶者は，変動する運動症状の他，発症早期より出現する非運動症状にも翻弄されていた．そのため，発症早期より専門職の役割を伝え，症状を捉えた配偶者の工夫や努力を評価し，捉えにくい症状ゆえ生じやすい夫婦の齟齬に気づいて関わることの必要性が示唆された．

Objective: This study aimed to identify the difficulties experienced by spouses caring their partners with Parkinson's disease (PD), focusing on the period before they became bedridden.

Methods: We conducted semi-structured interviews with 10 spouses caring for their partners with PD. Data were analyzed qualitatively and subjected to descriptive analysis.

Results: The spouses were “facing an intractable and perplexing disease”, however they were “challenged to care for fluctuating symptoms”. Furthermore, they “wished to cherish their present life supported by the couple's history together”. At the same time, the spouses were “deeply suffering from the elusive symptom”, and they were “distressed by the great disparity in aging due to spouses' disease.” Therefore, they “desired someone who could support them with deep understanding of the elusive symptoms”.

Conclusion: Spouses in this study were affected by fluctuating motor symptoms, and non-motor symptoms emerging in the early stages. Therefore, it is highly recommended that care is offered to a) emphasize the professionals support in the early stages, b) evaluate patients and spouses ideas and efforts at understanding the symptoms, and c) consider that fluctuating symptoms cause miscommunication between the couple.