Continuity of Care, Structural Inequities and Neonatal Outcomes among Pregnant Women with Sickle Cell Disease in Uganda: A Mixed-Methods Study.

Abstract

Pregnancy among women with sickle cell disease (SCD) is high-risk and shaped by clinical vulnerability and systemic barriers. We examined how continuity of care, equity, and social support influence neonatal outcomes and reproductive experiences among women with SCD in Uganda. We conducted a convergent mixed-methods study among 140 enrolled pregnant women with SCD, of whom 135 completed follow-up and were included in the final analysis. Quantitative data included measures of continuity of care (antenatal attendance, follow-up adherence, ease of access), equity indicators (education, employment, marital status, partner support), and clinical vulnerability (haemoglobin, Vaso-occlusive crises). Logistic regression and generalized structural equation modelling assessed associations and mediation. Qualitative data from 34 in-depth interviews and 5 focus group discussions with women and healthcare providers were analysed thematically and integrated with quantitative findings. Continuity of care was strongly protective against adverse fetal or neonatal outcomes (AOR 0.48, 95% CI 0.27-0.87). Adequate antenatal attendance, ease of access, and consistent follow-up adherence were individually protective. Clinical severity, particularly at least three Vaso-occlusive crises, substantially increased risk (AOR 6.33, 95% CI 1.18-33.96). Education, employment, and marital status were not significantly associated with outcomes. Partner support was associated with higher continuity scores (β 0.65, 95% CI 0.13-1.16). Qualitative findings converged with quantitative results, revealing threats to reproductive autonomy, stigma and social abandonment, structural health system barriers (costs, referrals, shortages), and provider moral distress. These systemic constraints undermined care continuity and compounded clinical risk. Continuity of care is a critical protective factor for neonatal outcomes among women with SCD, while socio-demographic advantage alone does not confer protection. Policies should prioritize strengthening care continuity, enhancing social support, and addressing structural health system inequities to improve outcomes in this high-risk population.