Chronic pain lived experience of pediatric sickle cell disease: A qualitative study.

OBJECTIVE: This study aimed to describe the child- and parent-centered lived experience of chronic sickle cell pain and its management among children and adolescents living with sickle cell disease (SCD). A secondary aim was to examine culturally relevant treatment preferences to inform clinically meaningful end points for nonpharmacological behavioral treatments and identify facilitators and barriers to behavioral treatments to enhance the feasibility and acceptability of future chronic sickle cell pain treatment programs. METHOD: Participants were 14 dyads of children and adolescents with SCD and their parents. A qualitative, participatory approach was used to conduct individual semistructured interviews with iterative refinement of the interview guide, coding, and analysis throughout. RESULTS: Child and parent experiences described three overarching themes: (a) the experience of chronic sickle cell pain and its management, including the negative impact and increased stress from frequent school absences, hospitalizations, peer socialization, and changes in autonomy with age; (b) the impact on parent and family functioning, including parenting stress, needing community support, protecting each other from impacts of pain, and parents feeling guilt for the genetics of SCD; and (c) preferences for treatment and interventions, including expertise and trust in treating providers and skill acquisition to support living a full, valued life. CONCLUSIONS: Children with chronic SCD pain and their caregivers conceptualize children's pain experiences as complex, dynamic, and shaped by the surrounding context. Adapting interventions to address the unique individual and family experiences and needs may enhance behavioral pain interventions, treatment engagement, and optimize the health of children with chronic SCD pain. (PsycInfo Database Record (c) 2025 APA, all rights reserved).