Oslo University Hospital, Oslo, Norway.
University of the West of England, Bristol, Bristol, United Kingdom.
Qual Health Res. 2022 Jan;32(1):3-15. doi: 10.1177/10497323211039205. Epub 2021 Oct 1.
To investigate parents' reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: "Managing emotions: A dynamic process," "Through another lens: External reminders of difference," and "Awareness of difference: Approaching the child." Findings suggest that although parents learned to accept and love their child's visible difference, external factors such as appearance-altering surgery and other people's reactions activated difficult emotions in parents. Parents struggled to decipher whether and when to raise appearance-related issues with their child, and how this could be done without distressing the child. Anticipatory guidance that facilitates positive appearance-focused conversations both within and outside the home seems to be needed. Parenting skills could also be strengthened by preparing parents for social reactions to the child's visible difference, and their child's changed appearance following surgery.
为了探究父母对于孩子外貌改变的感受和经历,我们对 33 位有先天颅面畸形孩子的家长进行了访谈,并运用归纳主题分析的方法对访谈内容进行了分析。研究得出了三个主题:“情绪管理:一个动态的过程”、“从另一个角度看:外部差异的提醒”以及“意识到差异:接近孩子”。研究结果表明,尽管父母学会了接受并爱自己孩子的外在差异,但外貌改变手术和其他人的反应等外部因素会激活父母的复杂情绪。父母努力揣摩何时以及如何与孩子谈论与外貌相关的问题,而又不使孩子感到困扰。需要提供前瞻性指导,以促进家庭内外积极的关注外貌的对话。通过为父母做好准备,使其能够应对孩子的外在差异以及手术后孩子外貌的改变,也可以增强父母养育子女的技能。