Background/Purpose:

Scleroderma is a rare disease, especially in childhood.  Skin changes can be physically disfiguring which can lead to lowered self-esteem, especially during the adolescent years when physical appearance is emphasized. No psycho-educational programs exist to help children and their families cope with disease management, prognosis and psychosocial issues.  A qualitative interview study was conducted to determine the appropriate content, delivery methods and targeted audience to be included in a psycho- educational program for children with scleroderma and their parents

Methods: Participants were recruited through the Scleroderma Foundation (SF) website and at the annual conference. Participants completed consent and assent forms, a demographic questionnaire and the Childhood Health Assessment Questionnaire (CHAQ). Parents and children then participated in either focus groups (FG) or interviews. Two in person FG were convened at the SF annual conference; one with children and one with their parents, similarly two online FG were conducted, with children and parents who were unable to interview in person. Five child/parent interviews were also conducted: one in person and four via telephone. The telephone, in person, and FG interviews were audio recorded and transcribed. The documents from the online FG were downloaded for analysis.

Interview and FG questions centered on key information needed at time of diagnosis, desired content, format and target audience for a self-management program, managing questions from peers, and desired content on transition for pediatric to adult services. Data analysis was directed at identifying common themes. Key interview questions served as the initial organizing framework for data analysis Participants’ responses to these questions were coded for key themes independently by the analysts and then reviewed for agreement. Differences were resolved by returning to the transcripts to reexamine the data jointly and discussing the data and  themes until consensus was achieved.

Results: Eleven dyads (6 with jSSc, 5 with JLS) were included in the study. The majority of the children were female (90.9 %); all were White non-Hispanic. Mean age of the children was 14.5 years, their mothers was 46.5 years, the mean CHAQ disability score was 0.41.  Analysis of the data revealed 8 themes: Lack of Scleroderma Information, Uncertain Future, Need for Internet Resources, Isolation, Disease Management, Health Professional Face to Face Time, Helping Explain to My Peers, and Self-Advocacy.

Conclusion: This is the first study to assess the educational needs of children with scleroderma and their parents. The psychosocial themes that emerged from this study are consistent with the low CHAQ disability scores and reflect children are affected psychologically and socially.  Patient education for children with chronic diseases is valuable in helping the child and family cope with disease management, prognosis and psychosocial issues.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-qualitative-study-of-the-educational-needs-of-children-with-scleroderma-and-their-parents/