Using Parental Experiences with Sickle Cell Disease Screening and Diagnosis to Guide Health Science Education: A systematic review and integrative qualitative meta-synthesis

Abstract

Sickle cell disease (SCD) is a chronic, lifelong, often debilitating, inherited disorder that can affect every organ system. Affected individuals often experience repetitive pain crises, multiple hospitalizations and a diminished quality of life. Many people at risk for SCD are unaware of their sickle cell carrier status and surprisingly health care providers’ knowledge of SCD is limited. Research literature focuses mainly on management of clinical manifestations of the disease. This systematic review and integrative qualitative meta-synthesis aims to capture parents’ perspectives on the screening process and diagnosis of SCD or sickle cell trait (SCT). Information generated by this review will be helpful in contributing to the development or enhancement of guidelines and protocols in SCD and SCT management for health care providers and health care educators.