Children with facial morphoea managing everyday life: a qualitative study3. (7th June 2018)

• Record Type: Journal Article
• Authors: Stasiulis, E.; Gladstone, B.; Boydell, K.; O'Brien, C.; Pope, E.; Laxer, R. M.
• Is Part Of: British journal of dermatology. Volume 179:Number 2(2018)
• Page Start: 353
• Page End: 361
• Publication Date: 2018-06-07
• Subjects: Dermatology -- Periodicals; Skin -- Diseases -- Periodicals; 616.5
• DOI: 10.1111/bjd.16449
• Languages: English
• ISSNs: 0007-0963

Abstract

Summary: Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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. Abstract : What's already known about this topic? Facial morphoea is a chronic inflammatory skin disorder that can be disfiguring, typically presenting in childhood and adolescence. Existing research using quantitative measures indicates that children with facial morphoea experience a mild‐to‐moderate impairment in quality of life. What does this study add? This is the first study to use qualitative methods to explore in depth the impact of facial morphoea on the lives of children and their parents. Children with facial morphoea experience significant psychosocial challenges, including perceptions of being different and negative reactions from others, such as intrusive questioning and bullying. Management strategies entail normalizing the experience of having facial morphoea. Treatment effects can be as distressing as the illness itself. What are the clinical implications of this work? Clinicians can support children with facial morphoea and their parents by helping them to construct explanations in response to intrusive questioning, providing access to resources for managing anxiety and bullying, and connecting children to peer support. The potential adverse impact of treatment needs to be considered when developing treatment plans. Linked Comment: Montgomery. Br J Dermatol 2018;179 :245–246 . Plain language summary available online Respond to this article