Using research: Educational resources for rheumatic heart disease in women

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

Yarning about ‘that heart problem’: RHD in pregnancy

This is a case study drawn from the experiences of two women who participated in the study. ‘Sylvia’ is a pseudonym to represent the shared lived experiences of some Aboriginal NT women with RHD during their pregnancy

Rheumatic heart disease in pregnancy: Strategies and lessons learnt implementing a population-based study in Australia

Background The global burden of rheumatic heart disease (RHD) is two-to-four times higher in women, with escalated risk in pregnancy. In Australia, RHD is found predominantly among Aboriginal and Torres Strait Islander peoples. Methods This paper reviews processes developed to identify pregnant Australian women with RHD during a two-year population-based study using the Australasian Maternity Outcomes Surveillance System (AMOSS). It evaluates strategies developed to enhance reporting and discusses implications for patient care and public health. Results AMOSS maternity coordinators across 262 Australian sites reported cases. An extended network across cardiac, Aboriginal and primary health care strengthened surveillance and awareness. The network notified 495 potential cases, of which 192 were confirmed. Seventy-eight percent were Aboriginal and/or Torres Strait Islander women, with a prevalence of 22 per 1,000 in the Northern Territory. Discussion Effective surveillance was challenged by a lack of diagnostic certainty; incompatible health information systems and varying clinical awareness among health professionals. Optimal outcomes for pregnant women with RHD demand timely diagnosis and access to collaborative care. Conclusion The strategies employed by our study highlight gaps in reporting processes and the opportunity pregnancy provides for diagnosis and re/engagement with health services to support better continuity of care and promote improved outcomes

Rheumatic heart disease in pregnancy: How can health services adapt to the needs of Indigenous women? A qualitative study

Objectives: To study rheumatic heart disease health literacy and its impact on pregnancy, and to identify how health services could more effectively meet the needs of pregnant women with rheumatic heart disease. Materials and methods: Researchers observed and interviewed a small number of Aboriginal women and their families during pregnancy, childbirth and postpartum as they interacted with the health system. An Aboriginal Yarning method of relationship building over time, participant observations and interviews with Aboriginal women were used in the study. The settings were urban, island and remote communities across the Northern Territory. Women were followed interstate if they were transferred during pregnancy. The participants were pregnant women and their families. We relied on participants’ abilities to tell their own experiences so that researchers could interpret their understanding and perspective of rheumatic heart disease. Results: Aboriginal women and their families rarely had rheumatic heart disease explained appropriately by health staff and therefore lacked understanding of the severity of their illness and its implications for childbearing. Health directives in written and spoken English with assumed biomedical knowledge were confusing and of limited use when delivered without interpreters or culturally appropriate health supports. Conclusions: Despite previous studies documenting poor communication and culturally inadequate care, health systems did not meet the needs of pregnant Aboriginal women with rheumatic heart disease. Language‐appropriate health education that promotes a shared understanding should be relevant to the gender, life‐stage and social context of women with rheumatic heart disease