Why do children with sickle cell disease need support?
- Sickle cell disease is a life-long disease with many challenges. As part of care for sickle cell disease, education about SCD and the management of complications is recommended.
- Many children with sickle cell disease have limited coping strategies for dealing with the disease and complications of the disease.
- To help children learn more strategies for dealing with sickle cell disease, we created the Cellie Coping Kit.
What does the Cellie Coping Kit for Sickle Cell Disease include?
- Cellie toy
- A book for caregivers
- 40 coping cards for children & a Cellie card box
- A Cellie back pack
What research has been completed with the Cellie Kit for Sickle Cell Disease?
Our initial research results suggest that families find the kit helpful, engaging, and educational. Children and parents report learning more about sickle cell disease and how to manage its challenges.
Cellie for Sickle Cell Disease Research References
- Marsac, M.L., Hildenbrand, A.K., Klingbeil, O., Jones, A., Mehta, N., Alderfer, M.A. & Barakat, L.P. Adapting the Cellie Coping Kit for children with sickle cell disease. Poster at the Annual Convention of the American Psychology Association, Honolulu, Hawaii, August 2013.
- Klingbeil, O., Hildenbrand, A.K., Alderfer, M.A., Kassam-Adams, N., Smith-Whitley, K., Barakat, L.P., Marsac, M.L. Coping Influence of the Cellie Coping Kit for Sickle Cell Disease. Poster presented at the Society of Pediatric Psychology Annual Conference, Philadelphia, PA, March 2014.
- Hildenbrand, A.K., Klingbeil, O., Alderfer, M.A., Smith-Whitley, K., Barakat, L.P., Marsac, M.L. A novel coping tool for children with cancer and sickle cell disease: The Cellie Coping Kit. Poster presented at the 35th Annual Meeting & Scientific Sessions of the Society of Behavioral Medicine, Philadelphia, PA, April 2014.
- 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.
Tell us what you think!
- We love to hear feedback about how you use the Kit or new ideas that you have!
- Complete our survey at https://tiu.research.chop.edu/redcap/redcap/surveys/?s=RFTcW3 or contact us at firstname.lastname@example.org.
- You can also follow us on facebook: https://www.facebook.com/celliecopingkit