Using Research: Educational Resources for Rheumatic Heart Disease in Women

Abstract

Background: A study of Aboriginal women's journeys with Rheumatic Heart Disease (RHD) in Australia found that women and their families rarely had a deep understanding of the cause or implications of their disease. Despite contact with health staff, often since childhood, participants lacked understanding of the severity of their illness and its implications for childbearing. Several information/educational initiatives were developed to improve health literacy and have informed other strategies. Methods: Content review related to an evidence-base of selected educational resources developed for and by women with RHD, health services and researchers since 2015. Results: Three resources were selected for review. The first, an information flier on RHD in pregnancy for health professionals, was co-designed by Australasian Maternity Outcomes Surveillance System (AMOSS) researchers, midwives and Aboriginal health practitioners. The second, ‘Sharing a heartbeat’ is a two-part video in multiple Aboriginal languages, which explores fertility, pregnancy and family for Indigenous women with RHD. It was written and directed by Aboriginal women in partnership with researchers. The third is a flipchart with brief text and corresponding illustrations, that guides interaction between health providers and women with RHD in primary health low/middle-income settings. It was developed by Reach, a global RHD technical assistance organisation, building on the AMOSS resource. Discussion: A shared understanding of RHD is essential to improve knowledge and decision-making about the disease and its impact for women's health. The resources described show how research can learn from and inform a collaborative approach to health literacy at both local and global levels.