"Heartbreak and Frustration'' experiences of healthcare providers caring for pregnant women with sickle cell disease in Uganda.

Abstract

Sickle Cell Disease (SCD) is a hereditary hemoglobinopathy that poses significant risks during pregnancy, leading to increased maternal complications such as Vaso-occlusive crises, acute chest syndrome, preeclampsia, preterm labor, and perinatal complications such as preterm births, low birthweights and mortality. The complexities surrounding the management of SCD extend beyond the clinical symptoms and require a comprehensive understanding of the social, emotional, and systemic factors that influence patient outcomes. While existing research has largely focused on the epidemiology and clinical outcomes of SCD in pregnancy, little is known about the perspectives of frontline healthcare providers in resource-limited settings. To explore the experiences of healthcare providers in managing pregnant women with sickle cell disease. A qualitative approach with phenomenological research design was employed, utilizing in-depth interviews and Focus Group Discussions (FGDs) to gather insights from healthcare providers at a regional and national referral hospital. Participants included obstetricians, midwives, and general practitioners working in maternity departments. Inductive thematic analysis was conducted to identify key themes and patterns. The study identified several themes based on various health system building blocks and the different levels of the Behavioural Ecological Framework. Individual-level themes included knowledge gaps and awareness, fear and anxiety related to managing a pregnant woman with SCD, and emotional and psychological distress. Community-level influences consisted of religious beliefs, cultural beliefs, as well as myths and misconceptions. At the health systems level, key themes encompassed diagnostic challenges, shortages of critical supplies, lack of management guidelines, and the absence of multidisciplinary and specialized services. A multidisciplinary approach that integrates clinical expertise, patient education, and healthcare system reforms is essential for improving maternal and neonatal health in pregnant women with SCD.