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Children with facial morphoea managing everyday life: a qualitative study
E Stasiulis1,2, B Gladstone3, K Boydell1,3,4
1Child and Youth Mental Health Research Unit, The Hospital for Sick Children, Toronto, ON, Canada.
The British Journal of Dermatology
|February 17, 2018
Summary
Children with facial morphoea experience significant stress due to the condition
Area of Science:
- Dermatology
- Psychology
- Sociology
Background:
- Facial morphoea is a chronic, disfiguring inflammatory skin condition.
- It often presents in childhood and adolescence.
- It can impact quality of life.
Purpose of the Study:
- To explore the lived experiences of children with facial morphoea.
- To examine the psychosocial impact of the condition.
- To understand coping strategies used by children and families.
Main Methods:
- Qualitative, social constructionist approach.
- Focus groups, in-depth interviews, and drawing activities.
- Interpretive thematic analysis of data from 10 children and 13 parents.
Main Results:
- Children and parents reported stress related to lack of knowledge and perceived differences.
- Self-perception was influenced by lesion visibility, life transitions, and social reactions (bullying, questioning).
- Management strategies included normalizing the experience, hiding signs, creating explanations, and peer connection.
Conclusions:
- Understanding patient perspectives is crucial for improving quality of life.
- Healthcare providers can support families with resources for anxiety, bullying, and education.
- Peer support opportunities are beneficial for children with facial morphoea.
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