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 they 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 using the Cellie Coping Kit. Fifteen children with SCD (ages 6–14) and their caregivers participated in a baseline assessment including semistructured 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 4 weeks before completing a follow-up assessment. Results indicated strong intervention acceptability overall. Although 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 affects behavioral change and improved health outcomes.