Children with facial morphoea managing everyday life: a qualitative study

E. Stasiulis, B. Gladstone, K. Boydell, C. O'Brien, E. Pope, R. M. Laxer

This study explores the everyday experiences of children with facial morphea by examining the psychosocial impact of living with facial morphea 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 morphea 8-17 years of age and 13 parents. Interpretive thematic analysis was utilized to examine the data. Children and parents reported on the stress of living with facial morphea, which was related to the lack of knowledge about facial morphea 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 reactions of others, (e.g. intrusive questioning and bullying). Medication routines and side effects, such as weight gain added to participants' stress. To manage the impact of facial morphea, 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 morphea from the perspectives of children and parents is important for devising ways to support children with facial morphea to achieve a better quality of life. Health care providers can help families access resources to manage anxiety, deal with bullying and construct adequate explanations of facial morphea, as well as providing opportunities for peer support. This article is protected by copyright. All rights reserved.