Physical activity among adolescents and young adults living with chronic pain and sickle cell disease: a qualitative examination

Abstract Objectives Chronic pain among youth with sickle cell disease (SCD) is associated with significant functional disability. Physical activity is recommended for pediatric chronic pain and is safe, feasible, and beneficial for individuals with SCD, yet uptake is limited. This study describes the adolescent- and caregiver-centered lived experience of physical activity within the context of SCD and chronic pain to inform intervention targets. Methods Adolescents aged 12–18 years with any SCD genotype and medium or greater risk of chronic pain (Pediatric Pain Screening Tool) were recruited across two sites for an intervention development study. Semi-structured interviews elicited perspectives related to physical activity and its role in pain management. A deductive-inductive approach was used with the Fear Avoidance Model as an analytic framework. Results Adolescents (n = 12; 15.1 ± 1.5 years) were Black/African American, even sex distribution, with 92% Medicaid-covered. Caregivers (n = 12; 39.4 ± 5.8 years) were Black/African American, and 100% were mothers/stepmothers. Physical activity facilitators included structured social activities and older age. Barriers included triggering or worsening pain and safety concerns expressed by caregivers and adults. Caregivers emphasized that adolescents developing self-awareness helps them modify physical activity to prevent pain. Benefits of physical activity to manage pain included minimizing stiffness and pain exacerbation and sustained pain reduction. Conclusions Physical activity to manage chronic SCD pain may require individualization and adaptation to address patient and caregiver concerns. Future intervention targets need to address unique facilitators and barriers, minimize challenges, and promote benefits of physical activity for chronic SCD pain.