Children with facial morphoea managing everyday life

Summary Facial morphea is a rare chronic inflammatory skin disorder that occurs on the face and can be disfiguring. It typically appears in childhood and adolescence and may have a significant impact on self‐esteem, psychosocial outcomes and quality of life. The few studies examining quality of life in children with morphea reported mild to moderate impact. However, these studies included small numbers of facial morphea cases and used questionnaires that cannot describe the complex experience of living with this visible skin disorder. This study used qualitative methods and a social constructionism approach to understand how facial morphea affects the everyday lives of children and their parents. The study was located in Canada and ten children with facial morphea, aged 8–17 years, and 13 parents took part in individual or group interviews and were asked to create a drawing about what it was like to live with facial morphea. Findings indicated that living with facial morphea was stressful. Stress was related to children's perceptions of being different, which was linked to life transitions, reactions of others (e.g. intrusive questioning and bullying) and treatment effects (e.g. weight gain). Managing the impact of facial morphea involved hiding its physical signs, constructing explanations about what “it” is and connecting with peers. Clinicians can support children with facial morphea achieve a better quality of life by helping them learn how to respond to intrusive queries, developing opportunities for peer support and attending to the anxiety associated with illness uncertainty and medical treatment.