Caring for Pregnant Women with Rheumatic Heart Disease: A Qualitative Study of Health Service Provider Perspectives

Abstract

Background: Rheumatic heart disease (RHD) persists in low-middle-income countries and in high-income countries where there are health inequities. RHD in pregnancy (RHD-P) is associated with poorer maternal and perinatal outcomes. Our study examines models of care for women with RHD-P from the perspectives of health care providers. Methods: A descriptive qualitative study exploring Australian health professionals’ perspectives of care pathways for women with RHD-P. Thematic analysis of semi-structured interviews with nineteen participants from maternal health and other clinical and non-clinical domains related to RHD-P. Results: A constellation of factors challenged the provision of integrated women-centred care, related to health systems, workforces and culture. Themes that impacted on the provision of quality woman-centred care included conduits of care – helping to break down silos of information, processes and access; ‘layers on layers’ – reflecting the complexity of care issues; and shared understandings – factors that contributed to improved understandings of disease and informed decision-making. Conclusions: Pregnancy for women with RHD provides an opportunity to strengthen health system responses, improve care pathways and address whole-of-life health. To respond effectively, structural and cultural changes are required including enhanced investment in education and capacity building – particularly in maternal health – to support a better informed and skilled workforce. Aboriginal Mothers and Babies programs provide useful exemplars to guide respectful effective models of care for women with RHD, with relevance for non-Indigenous women in high-risk RHD communities. For key goals to be met in the context of RHD, maternal health must be better integrated into RHD strategies and RHD better addressed in maternal health.

Keywords

• rheumatic heart disease
• pregnancy
• health services