Motivations of women in Uganda living with rheumatic heart disease: A mixed methods study of experiences in stigma, childbearing, anticoagulation, and contraception.

Andrew Y Chang,Emmy Okello,Christopher T Longenecker,Juliet Nabbaale,Haddy Nalubwama,Allison R Webel,Isaac Ssinabulya,Susan Marie Graham

doi:10.1371/journal.pone.0194030

Abstract

BackgroundRheumatic heart disease (RHD) is a leading cause of premature mortality in low- and middle-income countries (LMICs). Women of reproductive age are a unique and vulnerable group of RHD patients, due to increased risk of cardiovascular complications and death during pregnancy. Yet, less than 5% of women of childbearing age with RHD in LMICs use contraceptives, and one in five pregnant women with RHD take warfarin despite known teratogenicity. It is unclear whether this suboptimal contraception and anticoagulant use during pregnancy is due to lack of health system resources, limited health literacy, or social pressure to bear children.MethodsWe conducted a mixed methods study of 75 women living with RHD in Uganda. Questionnaires were administered to 50 patients. Transcripts from three focus groups with 25 participants were analyzed using qualitative description methodology.ResultsSeveral themes emerged from the focus groups, including pregnancy as a calculated risk; misconceptions about side-effects of contraceptives and anticoagulation; reproductive decision-making control by male partners, in-laws, or physicians; abandonment of patients by male partners; and considerable stigma against heart disease patients for both their reproductive and financial limitations (often worse than that directed against HIV patients). All questionnaire respondents were told by physicians that their hearts were not strong enough to support a pregnancy. Only 14% used contraception while taking warfarin. All participants felt that society would look poorly on a woman who cannot have children due to a heart condition.ConclusionsTo our knowledge, this is the first qualitative study of female RHD patients and their attitudes toward cardiovascular disorders and reproduction. Our results suggest that health programs targeting heart disease in LMICs must pay special attention to the needs of women of childbearing age. There are opportunities for improved family/societal education programs and community engagement, leading to better outcomes and patient empowerment.

Highlights

Rheumatic heart disease (RHD) is one of the leading causes of premature morbidity and mortality in low- and middle-income countries (LMICs)
Several themes emerged from the focus groups, including pregnancy as a calculated risk; misconceptions about side-effects of contraceptives and anticoagulation; reproductive decision-making control by male partners, in-laws, or physicians; abandonment of patients by male partners; and considerable stigma against heart disease patients for both their reproductive and financial limitations
Mixed methods study of women in Uganda living with rheumatic heart disease to publish, or preparation of the manuscript

Summary

Introduction

Rheumatic heart disease (RHD) is one of the leading causes of premature morbidity and mortality in low- and middle-income countries (LMICs). Oral anticoagulant medications such as warfarin reduce the risk of stroke and thromboembolic events in patients with atrial fibrillation or mechanical heart valve replacement, but predispose those taking them to significant bleeding events [3]. Management of these therapies is more difficult in resource-poor settings, where close monitoring and regular follow up may be a challenge. Rheumatic heart disease (RHD) is a leading cause of premature mortality in low- and middle-income countries (LMICs). It is unclear whether this suboptimal contraception and anticoagulant use during pregnancy is due to lack of health system resources, limited health literacy, or social pressure to bear children

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Results

Conclusion