1. Children with Facial Morphea Managing Everyday Life: A Qualitative Study
Elaine Stasiulis1,2, Brenda Gladstone2, PhD, Katherine Boydell1,2,3, Christine O’Brien4, Elena Pope2,5, Ronald M. Laxer2,6
1Child and Youth Mental Health Research Unit, The Hospital for Sick Children, Toronto, Ontario; 2University of Toronto, Toronto, Ontario; 3Black Dog Institute, New South Wales; 4Divisions of Rheumatology and Department of Rehabilitation Services, 5General Pediatrics, Section of Dermatology, Department of Pediatrics, 6Rheumatology, Departments of Pediatrics and Medicine, The Hospital for Sick Children, Toronto, Ontario
British Journal of Dermatology. DOI: /bjd.16449

2. Elaine Stasiulis, Lead Author

3. Introduction What’s already known?
Facial morphea is a chronic inflammatory skin disorder that can be disfiguring, typically presenting in childhood and adolescence.
Existing research using quantitative measures indicate that children with facial morphea have a mild to moderate impairment in quality of life.

4. Objective
To explore the psychosocial implications of facial morphea on pediatric patients from the perspectives of children with facial morphea and their parents.

5. Methods
We used a qualitative methodological approach guided by social constructionism – a meta theory that emphasizes how culture shapes inter-subjective interpretations of the experience (e.g. living with and managing facial morphea).
Children attending the specialized Morphea Clinic and their parents were invited to participate in the study.
Sampling approach was purposive with maximum variation to include both genders, range of ages, diagnosed with facial morphea for at least six months.

6. Methods
Focus groups, in-depth individual interviews and drawing activities were conducted with children with facial morphea and parents of children with facial morphea.
Participants were asked how living with facial morphea affected their everyday life in the context of school, social activities and family life.
Participants were asked to complete a drawing that represented what it was like to live with facial morphea and then to explain what their drawing meant, generating reflective discussions and added insights.

7. Methods Data were examined using interpretive thematic analysis.
Analytic and procedural rigor aided verification of findings by employing strategies of peer debriefing, thick description, persistent observation and prolonged engagement.

8. Results
Ten children ages 8 to 17 years (7 females and 3 males) participated in the study (N=3 focus group; N=7 individual interviews).
Thirteen parents of children with facial morphea participated in the study (N=4 focus group; N=9 individual interviews).
Two main themes identified: 1)Impact of living with facial morphea and 2) Managing the impact of living with facial morphea.

9. Results – Impact of Living with Facial Morphea
Children and parents experienced stress related to the degree children perceived themselves as being different, which was linked to:
Experiencing transitions: reaching puberty and changing social environments (“looking matters a lot”, transitioning from elementary to middle and high school)
Troubling social interactions: intrusive questions and bullying (name-calling and “rude” or “pestering” questions)
Treatment as disrupting and worse than the illness (extreme nausea, weight gain)

10. Results – Managing the Impact of Living with Facial Morphea
Children and parents devised strategies to normalize the experience:
Managing self-presentation: Hiding and disguising (minimizing the physical signs via make-up, hairstyle, positioning their bodies
Managing information: Constructing explanations (avoiding stigma with simple answers such as “it’s a bruise”)
Feeling gratitude: Connections with “similar others” (making comparisons with others with worse illnesses and those who were similar to them)

11. Drawing by Young Person (age 15 years)

12. Discussion (1)
Contrary to previous studies, children experienced a range of psychosocial effects which had to be managed.
Consistent with studies on psychosocial effects on children with other visible skin diseases, participants experienced intrusive questions, perceived stigmatization, feelings of being different and bullying.

13. Discussion (2)
Rarity, uncertainty and lack of information brought added challenges to children with facial morphea heightening feelings of being stigmatized and different from others.
Adverse impact that treatment has on children (anxiety about the medication’s long-term effects, emotional distress of weight gain) can negatively impact quality of life and must be considered when developing treatment plans.

14. Discussion (3)
Children’s imagination and resourcefulness in managing impressions attests to the social competence they can develop due to illness experience.
However strategies of self-presentation (disguising) and self- protection (downward social comparisons) are short-term coping strategies that may impede long-term self-acceptance.

15. Discussion
By understanding the challenges that children with facial morphea face, healthcare providers can help children achieve improved quality of life by:
Helping them learn how to respond to intrusive queries
Providing access to resources to help with bullying
Attending to the anxiety associated with illness uncertainty and medical treatment

16. Conclusions What does this study add?
This is the first study to use qualitative methods to explore in- depth the impact of facial morphea on the lives of children and their parents.
Children with facial morphea experience significant psychosocial challenges including perceptions of being different, with negative reactions from others, such as intrusive questioning and bullying.
Management strategies entail normalizing the experience of having facial morphea.
Treatment effects can be as distressing as the illness itself.

17. Dr. Ronald Laxer, Principle Investigator

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