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

Belton, Sarahjane; Kruske, Sue; Pulver, Lisa Jackson; Sherwood, Juanita; Tune, Kylie; Carapetis, Jonathan R.; Vaughan, Geraldine; Peek, Michael; McLintock, Claire; Sullivan, Elizabeth A.

doi:10.1111/ajo.12744

Cited by 23 publications

(45 citation statements)

References 20 publications

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“…Papers that called for improved clinician training in primary health settings to support cardiac disease detection/referral were mostly (5/6) published since 2014. Gaps in awareness among primary health care nurses (and women) were associated with delayed referrals and consistent with other studies that found women received contradictory advice and limited education . Language‐appropriate health education that promoted a shared understanding was largely absent for Aboriginal women with RHD …”

Section: Resultssupporting

confidence: 81%

“…The most common types of study design were cohort (19) and case series (20), with two qualitative studies, one cross‐sectional and one longitudinal screening study . There was considerable heterogeneity in the methodologies, levels of evidence, and reporting measures of these predominantly retrospective studies.…”

Section: Resultsmentioning

confidence: 99%

“…All studies were conducted in tertiary care settings with access to cardiac (or dedicated obstetric‐cardiac) care, as well as primary health settings and regional centers . Maternal mortality ranged from 0% (16/42) to 37% .…”

Section: Resultsmentioning

confidence: 99%

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Standardizing clinical care measures of rheumatic heart disease in pregnancy: A qualitative synthesis

Vaughan

Dawson

Peek

et al. 2019

Birth

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Background Rheumatic heart disease (RHD) is a preventable cardiac condition that escalates risk in pregnancy. Models of care informed by evidence‐based clinical guidelines are essential to optimal health outcomes. There are no published reviews that systematically explore approaches to care provision for pregnant women with RHD and examine reported measures. The review objective was to improve understanding of how attributes of care for these women are reported and how they align with guidelines. Methods A search of 13 databases was supported by hand‐searching. Papers that met inclusion criteria were appraised using CASP/JBI checklists. A content analysis of extracted data from the findings sections of included papers was undertaken, informed by attributes of quality care identified previously from existing guidelines. Results The 43 included studies were predominantly conducted in tertiary care centers of low‐income and middle‐income countries. Cardiac guidelines were referred to in 25 of 43 studies. Poorer outcomes were associated with higher risk scores (detailed in 36 of 41 quantitative studies). Indicators associated with increased risk include anticoagulation during pregnancy (28 of 41 reported) and late booking (gestation documented in 15 of 41 studies). Limited access to cardiac interventions was discussed (19 of 43) in the context of poorer outcomes. Conversely, early assessment and access to regular multidisciplinary care were emphasized in promoting optimal outcomes for women and their babies. Conclusions Despite often complex care requirements in challenging environments, pregnancy provides an opportunity to strengthen health system responses and address whole‐of‐life health for women with RHD. A standard set of core indicators is proposed to more accurately benchmark care pathways, outcomes, and burden.

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Section: Resultssupporting

confidence: 81%

Section: Resultsmentioning

confidence: 99%

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Standardizing clinical care measures of rheumatic heart disease in pregnancy: A qualitative synthesis

Vaughan

Dawson

Peek

et al. 2019

Birth

Self Cite

View full text Add to dashboard Cite

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“…Moreover, the lack of understanding and trust for Aboriginal women often results in service disengagement and non‐attendance to antenatal clinics, consequently increasing the risk of missed RHD diagnosis or severity . There is increasing evidence to suggest that maternity services that incorporate Birthing on Country principles, such as Aboriginal mothers and babies partnership models, have earlier and increased engagement along with improved maternal and perinatal outcomes . Appropriate preconception care provides opportunities to optimise cardiac status prior to pregnancy and offer medical and/or surgical intervention when appropriate, thus reducing morbidity and mortality.…”

Section: Discussionmentioning

confidence: 99%

Rheumatic heart disease in pregnancy: Profile of women admitted to a Western Australian tertiary obstetric hospital

Ongzalima

Greenland

Vaughan

et al. 2019

Aust NZ J Obst Gynaeco

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This retrospective study assessed maternal and perinatal outcomes for women with rheumatic heart disease (RHD) admitted to the largest tertiary obstetric hospital in Western Australia from 2009 to 2016. Of 54 women identified, 75.9% were Indigenous, 59.3% lived in rural areas and 40.7% had severe RHD. Heart failure developed in 10% who gave birth. Indigenous women were younger, had higher gravidity (P = 0.0305), were more likely to receive secondary prophylaxis (P = 0.0041) and have sub-optimal antenatal clinic attendance (P = 0.0078). There were no maternal deaths and two perinatal deaths (4.0%), reflecting vigilance in the obstetric management of women with RHD in Western Australia.

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“…This represents one of the highest burdens of RHD in the world. The consequences of ARF and RHD are enormous, significantly impacting, including shortening, the lives of Aboriginal and Torres Strait Islander children, adolescents, young adults, individuals, families and communities in Australia [8][9][10].…”

Section: Introductionmentioning

confidence: 99%

Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease

Haynes,

Mitchell,

Enkel

et al. 2020

IJERPH

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In Australia, Aboriginal children almost entirely bear the burden of acute rheumatic fever (ARF) which often leads to rheumatic heart disease (RHD), a significant marker of inequity in Indigenous and non-Indigenous health experiences. Efforts to eradicate RHD have been unsuccessful partly due to lack of attention to voices, opinions and understandings of the people behind the statistics. This systematic review presents a critical, interpretive analysis of publications that include lived experiences of RHD. The review approach was strengths-based, informed by privileging Indigenous knowledges, perspectives and experiences, and drawing on Postcolonialism and Critical Race Theory. Fifteen publications were analysed. Nine themes were organised into three domains which interact synergistically: sociological, disease specific and health service factors. A secondary sociolinguistic analysis of quotes within the publications articulated the combined impact of these factors as ‘collective trauma’. Paucity of qualitative literature and a strong biomedical focus in the dominant narratives regarding RHD limited the findings from the reviewed publications. Noteworthy omissions included: experiences of children/adolescents; evidence of Indigenous priorities and perspectives for healthcare; discussions of power; recognition of the centrality of Indigenous knowledges and strengths; and lack of critical reflection on impacts of a dominant biomedical approach to healthcare. Privileging a biomedical approach alone is to continue colonising Indigenous healthcare.

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

Cited by 23 publications

References 20 publications

Standardizing clinical care measures of rheumatic heart disease in pregnancy: A qualitative synthesis

Standardizing clinical care measures of rheumatic heart disease in pregnancy: A qualitative synthesis

Rheumatic heart disease in pregnancy: Profile of women admitted to a Western Australian tertiary obstetric hospital

Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease

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