Translating Evidence into Intervention: The Cellie Coping Kit For Sickle Cell Disease

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1 Translating Evidence into Intervention: The Cellie Coping Kit For Sickle Cell Disease Meghan L. Marsac, PhD 1,2 Olivia Klingbeil 1,4 Aimee K. Hildenbrand, BS 1,4 Melissa A. Alderfer, PhD 1,3 Kim Smith-Whitley, M.D 1 Lamia Barakat, PhD 1,2 The Children's Hospital of Philadelphia 1 University of Pennsylvania 2 Nemours/Alfred I. dupont Hospital for Children 3 Drexel University 4 1

2 Disclosure Statement I am a co-inventor of the Cellie Coping Kit. The Children s Hospital of Philadelphia and I have filed a provisional patent for the kit and may benefit financially from the kit. Revenue will be steered back into research in accordance with CHOP s non-profit status.

3 Overview Supporting children with sickle cell disease Development of the Cellie Coping Kit Evaluation of the Cellie Coping Kit Future plans

4 Sickle Cell Disease Challenges: Learning from our families Stressor Child Parent Medical Complications Treatment and side effects Disruption in daily routines and activities Emotional reactions Communication issues Social challenges Concerns about the future Pain Bedwetting Treatment pain Needle sticks Taking medication Hospital visits/stays Missing school Talking to doctors or medical team Sharing information about SCD Feeling or looking different from others Transitioning to adulthood Missing work Pain Lack of energy/fatigue Co-morbid medical conditions Treatment pain Needle sticks Taking medication Hospital visits/stays Blood Transfusions Forgetting to drink water/dehydration Missing school Feelings of uncertainty Anger Talking to doctors or medical team Feeling or looking different from others Family Transitioning to adulthood Missing work Dealing with uncertainty Hildenbrand, A. K., Barakat, L. P., Alderfer, M. A., & Marsac, M. L. Coping and coping assistance among children with sickle cell disease and their parents. Journal of Pediatric Hematology/ Oncology, online early, 2013.

5 Sickle Cell Disease Challenges: What our Families Tell Us What s hard is that sometimes my sisters get to go outside and play while I just have to stay in. Child, female, age 9 years The hardest [part of SCD] for her right now is not finding the cure. Father; child age 8 years It s hard for me because I really want to learn and go to school, but I can t because my feet hurt. Child, female, age 9 years It s frustrating and hard for him when he s in pain for a couple days and he can t get relief. Mother; child age 9 years Hildenbrand, A. K., Barakat, L. P., Alderfer, M. A., & Marsac, M. L. Coping and coping assistance among children with sickle cell disease and their parents. Journal of Pediatric Hematology/ Oncology, online early, 2013.

cognitive-behavioral therapy (CBT) Other resources Anie, K. A., & Green, J. (2012). Psychological therapies for sickle cell disease and pain.

6 How can we support our families? Very few resources Psychological interventions: Cognitive coping skills training, biofeedback, pain management skill training, cognitive-behavioral therapy (CBT) Other resources Anie, K. A., & Green, J. (2012). Psychological therapies for sickle cell disease and pain. Cochrane Database System Reviews, 2, CD Chen, E., Cole, S. W., & Kato, P. M. (2004) A review of empirically supported psychosocial interventions for pain and adherence outcomes in sickle cell disease. Journal of Pediatric Psychology, 29(3), doi: /jpepsy/jsh021.

Goals for the Cellie Coping Kit Specific to sickle cell disease and its treatment Evidence-based Low cost Available when the child needs it Ability to tailor for

7 Goals for the Cellie Coping Kit Specific to sickle cell disease and its treatment Evidence-based Low cost Available when the child needs it Ability to tailor for each family Developmentally sensitive for children Engaging to families Be able to be integrated into physical care Easy to implement without a mental health provider

8 How did we develop the Cellie Coping Kit? Used the Cellie Cancer Coping Kit as a model Research on sickle cell disease Hematology experts Feedback from families Research study Continue to collect ideas So send them if you have them! cellie@ .chop.edu

9 The Cellie Coping Kit Caregiver s Guide Coping Cards Cellie

10 Cellie 10

11 Caregiver Book Communication I don t know how much information to share with my child about sickle cell disease People do not understand my child s sickle cell disease My child needs help talking to the doctor My child becomes nervous or upset any time we talk about treatment or going to the hospital or doctor s appointments Appointments and Procedures I need ideas to help my child with needle sticks My child has difficulty with blood transfusions /aphaeresis I have a difficult time getting my child to take his/her medications My child has to stay overnight at the hospital My child gets bored at the hospital/ doctor s appointments Symptoms, Treatment, and Side Effects My child has frequent pain My child has difficulty with sickle cell-related medical complications (pneumonia, gall stones, jaundice, sores on skin, frequent infections) My child needs help with nutrition and drinking enough water My child can t sleep My child is often tired My child wets the bed Emotional Reactions My child is sad or mad when he/she thinks about having sickle cell disease My child becomes upset about missing out on activities My child worries about changing to a doctor at an adult hospital School and Friends I m not sure what to tell my child s school/teachers about my child s diagnosis and treatment My child is missing a lot of school Kids tease my child about sickle cell disease and its complications My child is restricted to staying at home or in the hospital and doesn t get to see/misses his/her friends The Whole Family Supporting everyone in my family is challenging I m worried about my other children I know I should take care of myself, but I can t make time Other Family Motto Diaphragmatic Breathing (Deep Breathing Tips) Additional Resources Acknowledgements Ongoing Cellie Research and Development

12 Coping Card Example: My classmates keep asking me what is wrong with me when I am in pain TREATMENT SIDE EFFECTS School and Friends

13 Method Participants 15 children (ages 6-14) diagnosed with sickle cell disease and 1 caregiver of each child Procedure: Semistructured interview Introduction to kit Follow up assessment Marsac, M.L., Klingbeil, O.G., Hildenbrand, A.K., Alderfer, M.A., Kassam-Adams, N., Smith-Whitley, K., & Barakat, L.P. The Cellie Coping Kit for Sickle Cell Disease: Initial acceptability and feasibility. Clinical Practice in Pediatric Psychology, in press.

14 Results: Acceptability Child N (%) Parent N (%) Likes appearance of Cellie 11 (91.7) 12 (92.3) Kit is fun to use 12 (100) 11 (91.7) Kit gives good advice/tips 11 (91.7) 12 (100) Information in kit is trustworthy 11 (91.7) 12 (100) Would recommend kit to other kids/families 8 (72.7) 13 (100) Likes appearance of Cellie 11 (91.7) 12 (92.3) Likes the tips in Coping Cards/ Caregiver Book 10 (83.3) 12 (100)

15 Results: Feasibility How do families use the Cellie Kit? At home, hospital, and other locations such as in school To normalize experiences For education To learn new ideas for coping Communicating with caregivers To promote emotional expression For general comfort & fun 15

16 Results: Feasibility What did families learn? Signs, symptoms, and progression of sickle cell disease. I learned how to just talk to (my daughter) more about sickle cell. parent I learned signs for when my sickle cell was starting. -child 16

17 Research Results Summary Comprehensive Easy to use Engaging Relevant to their experience Implement strategies with little support Learned new skills for dealing with sickle cell and treatment The Cellie Coping Kit can help disseminate evidence-based strategies at a low cost

18 Dissemination Goals Ideal: Cellie Coping Kit provided to every sickle cell patient Additional Pathway: Clinics have one Cellie Kit Goal at CHOP: Provide Cellie Coping Kits free to every patient with sickle cell disease Fundraising Partnering with foundations

19 External Dissemination Strategies Plans: Outreach to pediatric sickle cell resource websites Blogs Conference Presentations Other ideas?

20 What s for Cellie? Partner with institutions to increase distribution More research: Efficacy & Implementation Extending to other populations Injury

21 Acknowledgements Thank you to families for providing feedback! CHOP Department of Hematology Research Team Members: Chuck Adams (MSW), Renee Cecil (RN), Danielle Cole, Alyssa Jones (BS), Nancy Kassam-Adams (PhD), Kristen Kohser (MSW), Nishi Mehta (BS), and Kelsey Smith (BS)

22 Ideas? Meghan L. Marsac, PhD Cellie

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