Technology & Industry

Evidence brief: “Heartbreak and Frustration’’ experiences of healthcare providers caring for pregnant women with sickle cell disease in Uganda

A sourced PLOS One study, published 2026-08-07. Read the researchers’ findings, methods and context, with links to connected African health evidence.

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Published in PLOS One on 2026-08-07, this study is presented as an attributed evidence briefing. The excerpts below are the original researchers’ words, reproduced under their Creative Commons Attribution licence. Health Signal has selected the abstract and, where needed, opening background paragraphs; the complete methods, results, limitations and references remain in the linked paper.

Original authors: Jackline Akello, Annettee Nakimuli, Grace Ndeezi, Musa Sekikubo, Ian Munabi, Ruth Namazzi, Deogratias Munube, David Mukunya, Francis Pebalo, Kenneth Mugabe, Savio Mwaka, Sarah Kiguli, Joseph Rujumba

Source: PLOS One • DOI 10.1371/journal.pone.0355018

Read the complete primary study ↗ · Creative Commons Attribution licence

From the researchers

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.

Introduction

Sickle Cell Disease (SCD) is a hereditary blood disorder characterised by the production of abnormal haemoglobin, leading to the deformation of red blood cells into a sickle shape. This condition presents significant health challenges, especially during pregnancy, when physiological changes can exacerbate complications associated with SCD. Globally, SCD affects approximately 5% of the population, with the highest prevalence found in sub-Saharan Africa, India, and the Middle East [1]. The World Health Organisation (WHO) has recognised the need for improved healthcare strategies for SCD management, particularly in regions where the disease is endemic [2]. The Lancet Haematology Commission has made specific recommendations aimed at enhancing care for individuals with SCD, emphasising the importance of integrating disease management into primary healthcare systems [3]. These recommendations underscore the necessity of a multidisciplinary approach that includes healthcare providers, social support systems, and patient education to mitigate the risks associated with SCD, particularly during pregnancy.

Pregnancy in women with SCD presents significant risks, including heightened rates of maternal morbidity and mortality, preterm birth, and fetal complications [4]. The physiological changes that occur during pregnancy, such as increased blood volume and alterations in blood viscosity, can trigger Vaso-occlusive crises and other complications related to SCD. Therefore, it is essential to understand the unique challenges faced by healthcare providers in managing SCD during pregnancy and the implications of these challenges on maternal and fetal outcomes.

Reading this evidence

Use the full paper to check the study design, participant selection, comparator and outcome definitions before drawing a practical conclusion. An association does not by itself show cause and effect. A reported performance measure needs its denominator and uncertainty. A finding from a particular facility, sample or time period should retain that scope when it is discussed elsewhere.

This briefing makes the source accessible within the wider technology & industry desk. It does not assess an individual patient or certify a product. When considering relevance to another health system, examine the original authors’ account of context and limitations, then seek local implementation evidence. The related reporting below provides other studies to read alongside this one; it is a topic connection, rather than a claim that their results are directly comparable.

© 2026 Jackline Akello, Annettee Nakimuli, Grace Ndeezi, Musa Sekikubo, Ian Munabi, Ruth Namazzi, Deogratias Munube, David Mukunya, Francis Pebalo, Kenneth Mugabe, Savio Mwaka, Sarah Kiguli, Joseph Rujumba. Excerpts reproduced under CC BY. Selection, formatting and contextual notes by Health Signal. The researchers are the authors of the source study, not members of Health Signal’s staff.

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Health Signal Editorial Desk

Health Signal’s publication desk curates source-based health analysis and attributed research briefings. Study authors and originating institutions are credited within each article. Preparation used AI assistance; source and licence checks do not constitute independent replication or clinical endorsement.

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