Bringing Visibility to Pediatric Sickle Cell Disease: A Needs Assessment to Inform Camp Programming

Sickle cell disease is a genetic hemoglobinopathy resulting in chronic and daily pain, risk of serious sequelae, and altered activities of daily living. Resources dedicated to helping individuals with sickle cell disease are lacking, especially compared to other chronic diseases. Children with sickle cell disease experience school absence, fractured peer relationships, frequent healthcare visits, stigma, and feelings of isolation. Additionally, chronic pain decreases developmentally important play and physical activity in these children. The purpose of this Doctor of Nursing Practice (DNP) project is to conduct a needs assessment to inform sickle cell disease family camp programming in southern Arizona. Once a camp experience can be safely implemented, the effects of a camp experience on knowledge, empowerment, and disease management in children with sickle cell disease will be investigated. Research specific to camps for children suffering from sickle cell disease is lacking, however ample evidence suggests the benefit of disease specific camps. Medical specialty camps provide an opportunity for children and families to normalize their condition, participate in activities, and form peer relationships in an environment that safely accommodates their unique needs. This has led to the initiation of an evidence-based project to develop a needs assessment for families affected by sickle cell disease and community partners to inform camp activity development guided by Bandura’s theory of self-efficacy and the Centers for Disease Control and Prevention (CDC) Framework for Program Evaluation.