Suzanne Belton1, Sue Kruske2, Lisa Jackson Pulver3, Juanita Sherwood4, Kylie Tune5, Jonathan Carapetis6, Geraldine Vaughan7, Michael Peek8, Claire McLintock9, Elizabeth Sullivan10. 1. Rheumatic Heart Disease Menzies School of Health Research, Global & Tropical Health, Darwin, Northern Territory, Australia. 2. Maternal and Child Health Institute for Urban Indigenous Health, University of Queensland, Brisbane, Queensland, Australia. 3. Pro-Vice Chancellor Engagement and Aboriginal & Torres Strait Islander Leadership, Western Sydney University, Sydney, NSW, Australia. 4. National Centre for Cultural Competence, The University of Sydney, Sydney, NSW, Australia. 5. Rheumatic Heart Disease Australia, Menzies School of Health Research, Darwin, Northern Territory, Australia. 6. Telethon Kids Institute, Perth, WA, Australia. 7. Australasian Maternity Outcomes Surveillance System (AMOSS), Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia. 8. Australian National University and The Canberra Hospital, Canberra, ACT, Australia. 9. National Women's Health Auckland City Hospital, Auckland, New Zealand. 10. Faculty of Health, University of Technology Sydney, Ultimo, Sydney, NSW, Australia.
Abstract
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.
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.
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