title: The Cellie Coping Kit for Sickle Cell Disease: Initial acceptability and feasibility.
abstract: Sickle Cell Disease (SCD) and its treatment can place physical and psychosocial strain on children and their families, underlining the need for behavioral and emotional support. Much of SCD is often managed at home, which may prevent children from obtaining supportive services from medical and psychosocial teams. Children with SCD report a restricted number of coping strategies specific to managing SCD and may benefit from education on adaptive coping. To address this unmet need, a coping tool for children with cancer (Cellie Cancer Coping Kit) was adapted for children with SCD. The Cellie Coping Kit for SCD (Cellie Coping Kit) includes a stuffed "Cellie" toy, coping cards for children, and a book for caregivers. This study sought to assess the acceptability and feasibility of an intervention utilizing the Cellie Coping Kit. Fifteen children with SCD (ages 6-14) and their caregivers participated in a baseline assessment including semi-structured interviews to examine SCD-related stressors and coping strategies. Next, families received a brief introduction to the Cellie Coping Kit and were provided with a kit to use independently over the next four weeks before completing a follow-up assessment. Results indicated strong intervention acceptability overall. While families reported using and learning information and skills from the Cellie Coping Kit, several challenges were identified (e.g., child's living situation, busy schedules). The Cellie Coping Kit is a promising tool to support children with SCD and their families. Future research should examine whether use of the Cellie Coping Kit impacts behavioral change and improved health outcomes.
authors: The Center for Injury Research and Prevention, The Children's Hospital of Philadelphia; Department of Psychiatry, University of Pennsylvania.
authors: Meghan L
authors: ML
authors: Marsac
authors: Department of Psychology, Drexel University; The Center for Injury Research and Prevention, The Children's Hospital of Philadelphia.
authors: Olivia G
authors: OG
authors: Klingbeil
authors: Department of Psychology, Drexel University; The Center for Injury Research and Prevention, The Children's Hospital of Philadelphia.
authors: Aimee K
authors: AK
authors: Hildenbrand
authors: Center for Healthcare Delivery Science, Nemours/Alfred I. duPont Hospital for Children.
authors: Melissa A
authors: MA
authors: Alderfer
authors: The Center for Injury Research and Prevention, The Children's Hospital of Philadelphia; Department of Pediatrics, University of Pennsylvania.
authors: Nancy
authors: N
authors: Kassam-Adams
authors: The Sickle Cell Center of The Children's Hospital of Philadelphia.
authors: Kim
authors: K
authors: Smith-Whitley
authors: Division of Oncology, The Children's Hospital of Philadelphia; Department of Pediatrics, University of Pennsylvania.
authors: Lamia P
authors: LP
authors: Barakat
keywords: coping; coping tool; family intervention; sickle cell disease