ハンチントン病患者の血縁者が遺伝のリスクを知りながら生きる体験

Experience of Relatives of Patients with Huntington's Disease

要旨

　目的：本研究は，ハンチントン病患者の血縁者がもつ遺伝に関する体験を明らかにし，看護職の役割を検討するための基礎資料とすることを目的とした．

　方法：半構造化面接法を用いてデータ収集し，質的記述的研究にて分析した．

　結果：研究参加者は10名，年齢は平均53.6歳（SD＝±28.5）であった．分析の結果，7つのカテゴリーと39のサブカテゴリーを抽出した．研究参加者は，【発症者への違和感】を持ち，【漠然と気づく家系の病気】を感じていた．【発症者の人格の変化による生活への支障】が生じ，【遺伝家系であることに囚われ（る）】，【自分が発症した時を脅え（る）】，【遺伝について伝えることを躊躇（する）】していた．さらに，【発症者自身やその家族が孤立（する）】していた者もいた．

　結論：ハンチントン病患者の第一度近親者は，漠然と家系の病気を気づき，遺伝について囚われ，自分が発症することに脅えながら，発症者とともに過ごしていた．

　Objectives: The objectives of this study were to explore the experience of relatives of patients with Huntington's disease and to develop a foundation for discussing nursing professional's roles in the care of patients with this disease.

　Methods: Data collected through semi-structured interviews were analyzed by a qualitative descriptive approach.

　Results: Participants (mean age = 53.6; SD = ±28.5) were 10 first-degree blood relatives of patients with Huntington's disease. Results of our analysis generated 7 categories and 39 subcategories describing participants' experience about their families and the disease. Many appeared to have a “sense of alienation toward affected individuals” and only a “vague awareness of their kin's disease,” given the existence of family members with similar symptoms. They also often reported they felt “constrained by their hereditary status,” and were “hesitant to tell others about their family history.” In addition, participants who spent time with patients often “imagined themselves contracting the disease,” and reported that “changes in their relative's personality interferred with their lives.” Also participants felt that “patients and their families stood alone from the communities”.

　Conclusion: These first-degree relatives of patients with Huntington's disease appeared to have complicated feelings toward their own hereditary disease status as well as that of other family members and the affected relative.