Lafrenaye Sylvie, Dumas Marc, Gosselin Émilie, Duhamel André, Bourgault Patricia
Department of Pediatrics, University of Sherbrooke, Sherbrooke.
Center for Clinical Research of the Sherbrooke University Hospital, Sherbrooke.
Qual Res Med Healthc. 2021 Oct 5;5(2):9174. doi: 10.4081/qrmh.2021.9174.
Parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. Our objective was to understand why those parents' interactions with the medical world were so different, ranging from hostile to collaborative, with the themes of identity, spirituality and serenity. A grounded theory design based on the narrative identity framework was used to interview sixteen parents. Three categories emerged: i) Parents in the category delegate all their power to God or medicine and are the most suffering parents as they do not author their life; ii) Parents in the category make every decision on their own causing much anxiety, and they become rebarbative to the medical world; iii) Parents in the category take advice from others, while remaining the authors of their stories and are the most serene parents. Understanding and recognizing these categories can have a major impact on communication with those families.
患有危及生命的疾病的孩子的父母会纠结于一些艰难的生存问题。我们的目标是理解为什么这些父母与医疗界的互动如此不同，从充满敌意到合作，涉及身份认同、灵性和宁静等主题。基于叙事身份框架的扎根理论设计被用于采访16位父母。出现了三类情况：一）处于第一类的父母将所有权力委托给上帝或医学，是最痛苦的父母，因为他们无法主宰自己的生活；二）处于第二类的父母自己做出每一个决定，导致很多焦虑，并且他们对医疗界变得反感；三）处于第三类的父母听取他人的建议，同时仍然是自己故事的作者，是最宁静的父母。理解和认识这些类别会对与那些家庭的沟通产生重大影响。
