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

<div><p>Background</p><p>Rheumatic 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.</p><p>Methods</p><p>We 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.</p><p>Results</p><p>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 (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.</p><p>Conclusions</p><p>To 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.</p></div

Reproduction as a balanced risk.

<p>Schematic depicting focus group theme of external and internal factors driving or inhibiting reproductive intent in women of childbearing age in Uganda.</p

Sociodemographic characteristics of focus group participants (n = 25).

<p>Sociodemographic characteristics of focus group participants (n = 25).</p

Sociodemographic characteristics of questionnaire participants (n = 50).

<p>Sociodemographic characteristics of questionnaire participants (n = 50).</p

Focus group themes–selected exemplar quotations.

<p>Focus group themes–selected exemplar quotations.</p

Focus group themes.

<p>List of the major themes and sub-themes encountered in the focus groups.</p

Opportunities for improvement.

<p>List of sub-themes encountered in the focus groups detailing opportunities for improvement in the current RHD healthcare system.</p

Questionnaire results.

<p>Questionnaire results.</p

The distribution of subclinical atherosclerosis across the Framingham risk score categories (n = 181).

<p>Note: 5 of the participants had missing variables for FRS score hence not included.</p><p>CIMT: Carotid intima media thickness, CI: Confidence interval</p

Characteristics of HIV infected adults attending two large ambulatory HIV clinics in Uganda.

<p>CIMT: Carotid Intima Media Thickness, IQR: Inter quartile range, WHO: World Health Organization, ART: Anti-Retroviral Therapy, NSAID: Non-Steroid Anti Inflammatory Drugs e.g. Ibuprofen, HDL: High Density Lipoprotein, LDL: Low Density Lipoprotein, TC-HDL: Total Cholesterol- High Density Lipoprotein ratio, hsCRP: high sensitivity C-reactive protein, ESR: Erythrocyte sedimentation rate</p><p>*Three patients were taking Dapsone as prophylaxis for opportunistic infections</p