Growing beyond sickle cell disease: A metasynthesis of children, adolescents, and young adult experiences living with sickle cell disease

Abstract

Children, adolescents, and young adults living with sickle cell disease (SCD) often experience an unpredictable and complex disease course. Although there is a growing literature on the lived experience of patients with SCD, qualitative syntheses are lacking. Therefore, a qualitative metasynthesis was conducted to inform care and potential interventions. Noblit and Hare's phases of metaethnographic research were used to guide the synthesis of qualitative data. Data extracted from the identified studies were directly compared through reciprocal translation. The 12 studies that met inclusion criteria for the meta‐synthesis included 177 participants ranging in age from 6 to 35 years old from six different countries. The authors identified three key metaphors: Ubiquitous Intrusion, Coping to Learn: Learning to Cope, and Part of the Whole. The metaphors were elucidated by three essential concepts that underlie the experience of children, adolescents, and young adults living with SCD: (1) recognition of SCD implications, (2) identifying ways to balance responsibilities, and (3) positioning oneself to thrive with SCD. The metaphors and essential concepts support the global theme of “Growing Beyond SCD.” The metasynthesis revealed the shared complexity of living with SCD among children, adolescents, and young adults from diverse cultures in which the yearning for a normal life drove learning to adapt and manage SCD with their support network. The key metaphors may be used to guide development of nursing interventions designed to promote self‐acceptance, coping, and adaptation skills among children, adolescents, and young adults that will help them to flourish while managing SCD as a chronic condition.