Child and Youth Mental Health Research Unit, The Hospital for Sick Children, Toronto, ON, Canada.
Institute of Medical Science, Toronto, ON, Canada.
Br J Dermatol. 2018 Aug;179(2):353-361. doi: 10.1111/bjd.16449. Epub 2018 Jun 7.
Facial morphoea is a chronic inflammatory skin disorder, typically presenting in childhood and adolescence, which can be disfiguring, and which has been suggested to cause mild-to-moderate impairment in quality of life.
To explore the everyday experiences of children with facial morphoea by examining the psychosocial impact of living with facial morphoea and how children and their families manage its impact.
We used a qualitative, social constructionist approach involving focus groups, in-depth interviews and drawing activities with 10 children with facial morphoea aged 8-17 years and 13 parents. Interpretive thematic analysis was utilized to examine the data.
Children and parents reported on the stress of living with facial morphoea, which was related to the lack of knowledge about facial morphoea and the extent to which they perceived themselves as different from others. Self-perceptions were based on the visibility of the lesion, different phases of life transitions and the reactions of others (e.g. intrusive questioning and bullying). Medication routines, and side-effects such as weight gain, added to the stress experienced by the participants. To manage the impact of facial morphoea, children and their parents used strategies to normalize the experience by hiding physical signs of the illness, constructing explanations about what 'it' is, and by connecting with their peers.
Understanding what it is like to live with facial morphoea from the perspectives of children and parents is important for devising ways to help children with the disorder achieve a better quality of life. Healthcare providers can help families access resources to manage anxiety, deal with bullying and construct adequate explanations of facial morphoea, in addition to providing opportunities for peer support.
面部硬皮病是一种慢性炎症性皮肤疾病，通常在儿童和青少年时期发病，可能导致毁容，并已被认为会导致轻度至中度生活质量受损。
通过研究患有面部硬皮病儿童的生活经历，探讨他们所面临的心理社会影响，以及他们自身和家庭如何应对其影响。
我们采用定性、社会建构主义方法，对 10 名 8-17 岁患有面部硬皮病的儿童和 13 名家长进行了焦点小组、深入访谈和绘画活动。采用解释性主题分析方法对数据进行了分析。
儿童和家长报告了患有面部硬皮病带来的压力，这与对该病的认识不足以及他们认为自己与他人有何不同有关。自我认知基于病变的可见性、生活过渡的不同阶段以及他人的反应（例如，侵入性的询问和欺凌）。药物治疗常规以及体重增加等副作用也增加了参与者所经历的压力。为了应对面部硬皮病的影响，儿童和家长使用了一些策略来使患病经历正常化，例如隐藏疾病的身体迹象、构建关于疾病的解释，以及与同龄人建立联系。
从儿童和家长的角度了解患有面部硬皮病的生活体验，对于设计帮助患病儿童提高生活质量的方法非常重要。医疗保健提供者可以帮助家庭获得资源来管理焦虑、应对欺凌，并对面部硬皮病进行适当的解释，此外还可以为同伴支持提供机会。
