The Role of Child Life Specialists in Transitioning Patients With Sickle Cell Disease From Pediatric Care to Adult Management

Abstract

The transitional period when adolescents and young adults (AYA) no longer see pediatric specialists or pediatricians and transfer their care to adult health care providers is important for all but can be especially complex for AYAs with sickle cell disease (SCD). Disease-specific education, patient and family resources, and psychosocial care are important during the transitional period from adolescence to adulthood. Certified Child Life Specialists (CCLSs) are trained to provide developmentally appropriate preparation and education, psychosocial support, encouragement of emotional expression, and the opportunity to form trusting relationships with the medical care team (Romito et al., 2021). CCLSs work with the multidisciplinary team (e.g., doctor, social worker, nurse, other medical professionals) to provide care during the transition period. The findings from this study identified categories of child life interventions during the first three transition visits for patients with SCD. Introduction of self and services, educational assessment, completion of an "All About Me" form, and rapport building were child life interventions present during Transition Visit 1. Patient education, family planning, provision of handouts, and educational assessment were child life interventions present for Transition Visit 2. Discussion and review of pain plan, education related to non-pharmacological pain management, deep breathing demonstration, and guided imagery demonstration were child life interventions present during Transition Visit 3. The findings from this study can provide implications for CCLSs working with patients who have SCD and face complex challenges associated with disease management and transitional care, and support the importance of child life documentation in the electronic medical record (EMR).