The Cellie Coping Kit for Sickle Cell Disease: Initial acceptability and feasibility.

Area of Science:

• Pediatric Hematology
• Psychosocial Support
• Chronic Illness Management

Background:

• Sickle Cell Disease (SCD) imposes significant physical and psychosocial burdens on children and families.
• Home-based management of SCD can limit access to crucial medical and psychosocial support services.
• Children with SCD often have limited adaptive coping strategies for managing their condition.

Purpose of the Study:

• To adapt and assess the acceptability and feasibility of the Cellie Coping Kit intervention for children with SCD.
• To provide a novel coping tool to address unmet psychosocial needs in pediatric SCD patients.
• To evaluate the usability of a coping kit comprising a toy, cards, and a caregiver book.

Main Methods:

• A mixed-methods approach involving baseline and follow-up assessments.
• Fifteen children with SCD (ages 6-14) and their caregivers participated.
• Intervention involved a four-week independent use of the adapted Cellie Coping Kit after a brief introduction.

Main Results:

• The Cellie Coping Kit intervention demonstrated strong overall acceptability among participants.
• Families reported learning new information and skills from the kit.
• Identified challenges included the child's living situation and demanding schedules.

Conclusions:

• The Cellie Coping Kit is a promising resource for supporting children with SCD and their families.
• Further research is warranted to explore the impact of the kit on behavioral changes and health outcomes.
• The intervention addresses a critical need for accessible coping strategies in pediatric SCD care.