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

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.

Standardizing clinical care measures of rheumatic heart disease in pregnancy: A qualitative synthesis

“…Papers that called for improved clinician training in primary health settings to support cardiac disease detection/referral were mostly (5/6) published since 2014. Gaps in awareness among primary health care nurses (and women) were associated with delayed referrals and consistent with other studies that found women received contradictory advice and limited education . Language‐appropriate health education that promoted a shared understanding was largely absent for Aboriginal women with RHD …”

“…The most common types of study design were cohort (19) and case series (20), with two qualitative studies, one cross‐sectional and one longitudinal screening study . There was considerable heterogeneity in the methodologies, levels of evidence, and reporting measures of these predominantly retrospective studies.…”

“…All studies were conducted in tertiary care settings with access to cardiac (or dedicated obstetric‐cardiac) care, as well as primary health settings and regional centers . Maternal mortality ranged from 0% (16/42) to 37% .…”

“…Medical management (such as beta‐blockers, digoxin, and/or diuretics) and percutaneous balloon mitral valvuloplasty (hereafter valvuloplasty) in refractory cases of mitral stenosis generally improved outcomes where reported. However, studies emphasized the challenges of providing optimal care in resource‐challenged environments, including appropriate clinician skills, access to medication, valvuloplasty and surgery, health system shortcomings, and sociocultural factors, with one (where 37% of women with rheumatic valvular disease died) noting that valvuloplasty facilities were simply unavailable at their tertiary center . The multicountry study found a greater number of valvular interventions in high‐income countries despite more women in low‐income settings having severe mitral stenosis …”

“…Emerging themes in a qualitative study of women's experiences with RHD included misconceptions about side effects of contraceptives; lack of agency in reproductive decision‐making; and stigma related to financial and perceived reproductive limitations …”