Rheumatic heart disease in pregnancy : gaps and facilitators of care

University of Technology Sydney. Faculty of Health. 𝗕𝗮𝗰𝗸𝗴𝗿𝗼𝘂𝗻𝗱 In the twenty-first century, rheumatic heart disease (RHD) persists in low- and middle-income countries as well as vulnerable populations in high-income countries, particularly Indigenous peoples. RHD in pregnancy (RHD-P) is associated with an increased burden of maternal mortality and morbidity, poorer perinatal outcomes, and compromised care pathways. There is inadequate knowledge regarding models of care for women with RHD-P. This research identifies and examines gaps and facilitators of optimal care for women with RHD-P with a focus on Australian health services. 𝗠𝗲𝘁𝗵𝗼𝗱𝘀 The mixed methods research employed a transformative parallel design lens, providing a mechanism with which to address the political and social complexities of research in the RHD-P arena and in turn establishing a framework for change. The study comprises three elements. The first involved a systematic review and qualitative synthesis of the peer-reviewed literature, that explored approaches to care provision for women with RHD-P and examine reported measures. It applied content analysis to examine models of care and clinical care reporting measures. The second element entailed a descriptive qualitative study that explored 19 health professionals’ perspectives of care pathways for women with RHD-P. The semi-structured interviews were analysed thematically. The final study conducted a process evaluation of the implementation of a population-based study of RHD-P in Australia. It examined the operationalising of the research project, and evaluated strategies developed to strengthen reporting and improve awareness of the impact of RHD during pregnancy among health services. 𝗙𝗶𝗻𝗱𝗶𝗻𝗴𝘀 The studies identified gaps related to health systems, health workforces and health information that impacted on effective models of care. The systematic review found that key reporting measures in studies that refer to RHD-P were poorly recorded. The qualitative study of health professionals’ perspectives of RHD-P identified a constellation of factors that challenged the provision of cohesive women-centred health care. Themes 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, informed decision-making, and the inclusion of family and community members. The process evaluation of the population level study of RHD-P exemplified several of the themes arising from the previous two studies. Effective reporting was negatively impacted by a lack of diagnostic certainty; incompatible health information systems and varying clinical awareness among health professionals. 𝗗𝗶𝘀𝗰𝘂𝘀𝘀𝗶𝗼𝗻 This research found that, despite often complex care requirements, pregnancy for women with RHD provides a unique opportunity to strengthen health system responses, improve care pathways, address whole of life health and ultimately reduce the burden of RHD for women. To respond effectively, structural and cultural changes are required to improve health system agility and capability. This includes enhanced investment in education and capacity building – particularly in maternal health – to support a better informed and skilled workforce; and improved information systems and reporting of core indicators to more accurately benchmark care pathways, outcomes and burden of RHD-P. 𝗖𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 Central to the provision of informed, respectful collaborative care for women with RHD is timely diagnosis, access to health services and continuity of care. The research recommendations based on study findings aim to better achieve these goals and, in doing so, ensure the needs of vulnerable women with RHD are better met.