心血管手術経験をもつマルファン症候群患者の体験

Experiences of Marfan Syndrome Patients with a History of Cardiovascular Surgery

要旨

目的：心臓血管手術経験をもち，疾患を抱えながら生活するマルファン症候群患者の体験を明らかにすることである．

方法：研究対象者6名に半構成的面接を実施し，質的統合法（KJ法）を用いて分析した．

結果：【突然死に対する恐怖心を見てみぬふりをしてやり過ごす】【他人とは違うというコンプレックスを仕舞い込む】【抗えない，努力のしようのない病気なので意識しないようにしている】【身近な人の死と手術経験を経て，命を大切に生きる】【結婚・子どもをもうけるかどうかの葛藤と消えない家族への呵責の念】【苦難を乗り越えて，今なら病気でも何とかなると思える】【社会の理解や医療・社会保障の整備を望む】【得た情報で不安になることもあるが，支えになる同病者との交流】のシンボルマーク8つが抽出された．

結論：内在する思いに配慮しつつ，遺伝看護の実践，セルフケア能力を高める援助，医療環境の整備の必要性が示唆された．

Objective: To uncover the experiences of Marfan syndrome patients with a history of cardiovascular surgery as they go about their lives.

Method: Six Marfan syndrome patients with a history of cardiovascular surgery participated in a semi-structured interview, and their responses were analyzed using the qualitative synthesis method (i.e. the KJ Method).

Results: Eight major symbolmarks were extracted from the interview data: “Withstanding feelings of dread about sudden death by ignoring them”, “Bottling up the inferiority complex-like thought pattern that I am different from others”, “Trying to avoid thinking about the disease, because it cannot be changed even with great effort”, “Cherishing life as a result of experiencing surgery, as well as the death of someone close to me”, “Feeling pangs of conscience towards my drive to marry/have kids and to a family who will not leave my side”, “After overcoming various hardships, being now able to believe that I can manage living with the disease”, “Hoping for society's understanding and the robust provision of medical care and social security”, “Interacting with other Marfan syndrome patients acts as support for me, even though the information I get can sometimes make me anxious”.

Conclusion: While considering the innermost emotion and thought of the patient, the importance of genetic nursing, assistance to enhance the self-care abilities, and the need for the development of a medical care environment were suggested.