がんのこどもと死別した母親が質的研究に参加することの利益と負担に関する倫理的考察

The Benefits and Burdens of Participation in Qualitative Research to Bereaved Mothers of Children Who Died of Cancer

要旨

　目的：がんのこどもと死別した母親が質的研究に参加する利益と負担を記述し，倫理的配慮を考察することを目的とした．

　方法：こどもと死別した母親12名を対象とし，研究過程での対象者とのやりとりの記述，面接終了後に実施した質問紙調査結果をデータとし，研究参加の負担と利益の観点から分析した．

　結果：研究参加による負担は，面接前の不安や溢れ出るわが子への思い，説明書の言葉への敏感な反応があり，面接前からケアとしての配慮を必要とした．一方，全員が研究参加はよい経験だったと評価し【心の内にしまっていた記憶の蓋をあけるきかっけ】，【改めて，死別したこどもに思いを馳せる時間】，【語ることによる生きる力の高まり】などの利益が抽出された．

　結論：遺族研究は，適切な倫理的配慮により，対象に利益をもたらすケアとしての意味をもつ．研究者は臨床的センシティビティを高め，誠実に柔軟に対応することが倫理的な研究実践である．

　Objective: This study investigated the benefits and burdens of participation in qualitative research experienced by bereaved mothers whose children died of cancer. The study also considered the ethical considerations of including these subjects.

　Methods: Data from 12 bereaved mothers, descriptions of the interactions between the researcher and the participants during interviews throughout the research process, and responses to a questionnaire administered after the interviews were completed, were analyzed in terms of the benefits and burdens of participating in the study.

　Results: The burdens of research participation included pre-interview anxiety, overwhelming feelings related to their children, and sensitive reactions to words within the research statements. Therefore, participants required compassionate care prior to the interview. However, all participants rated their participation in the study as a positive experience. Benefits of the study included "an opportunity to lift the lid on memories held in the heart," "an opportunity to think about the bereaved child again," and "increased strength to live gained through the telling of the story."

　Conclusion: Bereavement research is meant to be a form of care that, with appropriate ethical considerations, can bring many benefits to the vulnerable participants. In practice, ethical researchers should increase their clinical sensitivities, work with utmost integrity, and be flexible.