1. Educational Needs of Children with Scleroderma and their Parents Hannah Bloom, MOTS Nicole Nighbert, MOTS Janet L. Poole, PhD., OTR/L, Professor, Department of Pediatrics, School of Medicine Cindy Mendelson, PhD., RN, Associate Professor, College of Nursing Funding Provided by Signature Program in Child Health Research

2. Purpose of Study Although rare in children, scleroderma is a rheumatic disease that greatly affects function and daily life for the child. Due to the low prevalence of jSSc and linear scleroderma (morphea), there are no educational programs and limited educational materials available for these children and their parents. The purpose of this study is to determine the psycho-educational needs of children with jSSc and morphea and their parents.  To determine what information children with jSSc and morphea, and their parents, perceive they need to manage their disease.  To determine what delivery format would be of interest to children with jSSc and morphea and their parents.  To determine who should be the target audience for psycho-educational interventions for children with jSSc and morphea. Photo: www.scleroderma.org/medical/juvenile.shtm

3. Methods Four focus groups were completed for this study.  Focus group questions:  When you (or your child) were first diagnosed with jSSc or linear scleroderma, what was the key information that you felt you needed?  What have you learned that you wish had been explained to you when you were diagnosed?  A self-management program is being planned. What content would you like included? What format (internet, interactive game, written materials, in person, etc) do you think would work best?  Who do you think a self-management program should target?  If you or your child is 16 years or older, what content should be included to transition from pediatric to adult health care services?  What are the most common questions your friends and classmates ask you?  What information would you like to share with your friends and classmates?

4. Preliminary Themes Collected ThemeExample Statement Lack of Disease Information Child: “I needed to know what was happening to my body.” Parent: “I wanted to know what our treatment options were?” Uncertainty of the Future Child: “How will this affect my life?” Parent: “What does the future hold for her?” Self-Advocacy; taking care of yourself Child: “Have your doctors talk to you and not your mom.” Parent: “How do I teach my child how to care for herself and be responsible for herself?” Being DifferentChild: “A lot of people at my school think I have been burned.” Parent: “How do we talk about being different?”

5. Preliminary Themes Collected Need for research and Policy Child: “We need more research.” Parent: “There’s a bill in Congress and the Senate appropriating funds for scleroderma research.” I want more resources Child: “We were in total shock, when we got home my mom started researching it on the internet.” Parent: “I think written materials are always good in that you can put them aside and grab them again when you need them, but for my daughter something interactive online might be more effective.” Am I the only one? Child: “I remember thinking I was the only one.” Parent: “It would have been good to talk to other parents and kids to find out what kinds of treatments they have had.”

6. Summary and Conclusions One overarching theme - children and parents felt that there is insufficient information, research, and resources available. Once diagnosed, many children and their parents struggle to find significant and helpful information on the disease. Participants recommended the delivery model be interactive and age- specific. Participants stated preferences for internet based, face-to-face, and pamphlet size written materials as possible components of the delivery format for a self-management program. Next steps conduct additional focus groups and develop a self- management program.