Geraldine Vaughan

Introduction: Rheumatic heart disease (RHD) is the acquired autoimmune heart valve damage resulting from untreated infection with the Streptococcus pyogenes bacterium, which affects people experiencing socioeconomic disadvantage globally. This study measured RHD‐associated major adverse cardiovascular events (MACE) and the increased risk associated with pregnancy among women diagnosed with RHD. Material and Methods: Population‐level analysis of all births to women with RHD in four Australian jurisdictions was conducted, which covered 71% of the total population and 88% of the Aboriginal and Torres Strait Islander population (a group who experience some of the highest RHD rates reported globally). A retrospective cohort study using linked RHD register and midwives, hospital, and death data collections was designed. Females with at least one birth record aged 12–44 years, whose first RHD diagnosis occurred prior to 20 weeks' gestation and age < 35 years, were identified during 2002–2017. Survival methods (incorporating mixed effects and time‐varying covariates) estimated proportions and hazard ratios. Probability of hospitalization for new RHD‐associated MACE was measured for pulmonary hypertension secondary to left heart disease, heart failure, valvular surgery, stroke, infective endocarditis, atrial fibrillation, acute pulmonary edema, cardiomyopathy, and/or death. Results: We identified 558 pregnancies in women with uncomplicated RHD (345 women) and 88 pregnancies in women with complicated RHD (60 women). During pregnancy, 4.5% of women with uncomplicated RHD and 31.8% of women with complicated RHD experienced new RHD‐associated MACE. Risk of RHD‐associated MACE was three‐ to six‐fold higher during periods of pregnancy (compared with non‐pregnancy) and did not differ by RHD stage. Conclusions: After 20 weeks of gestation, women with RHD experienced RHD‐associated MACE outcomes at frequencies that were contingent upon RHD stage at 20 weeks of gestation. Awareness of RHD status before 20 weeks of gestation, especially in regions where RHD is endemic, is critical for ensuring women's cardiovascular health in pregnancy and beyond.

Objectives: Pacific Australia Labour Mobility (PALM) scheme workers (hereafter referred to as PALM participants) are integral to Australia's economic landscape, contributing predominantly to agriculture and meatworks sectors. Many PALM participants come from regions with high burdens of blood‐borne viruses (BBVs) such as hepatitis B virus (HBV), yet there is a lack of understanding of their Australian health experiences. This study explores the lived experiences of PALM participants, focusing on healthcare interactions and challenges faced in addressing health issues, particularly HBV and other BBVs. Methods: Eighteen semi‐structured interviews with agricultural PALM participants from four Pacific Island countries were conducted and analysed thematically through an equity lens. Results: A complex interplay of factors impacting health and healthcare system navigation was described, revealing challenges beyond HBV and other BBVs. Three overlapping themes are explored: (i) access issues, (ii) awareness and understanding; and (iii) ‘battling the system’. Conclusion: PALM participants have significant unmet healthcare needs, with public health and economic implications. Greater political will is required to prioritise equitable healthcare for this population. So What?: This study highlights required changes to inform effective policies and interventions that promote health equity and improve health outcomes for PALM participants from Pacific Island countries and Timor Leste, particularly in relation to HBV and other BBVs.

Objective To measure cardiovascular outcomes and risk associated with pregnancy among women diagnosed with rheumatic heart disease (RHD) prior to 20 weeks’ gestation. Design Retrospective cohort study using linked RHD register, midwives, hospital and death records. Setting Population-level analysis of all births to women with RHD in four Australian jurisdictions (covering 71% total / 88% Indigenous population). Sample Females aged 12-44 years with first RHD diagnosis prior to age 35 years with at least one birth record, 2002-2017. Methods Survival methods (incorporating mixed effects and time-varying covariates) estimated proportions and Hazard Ratios. Main Outcome Measures Probability of hospitalisation for new Cardiovascular complications including pulmonary hypertension secondary to left heart disease, heart failure, valvular surgery, stroke, infective endocarditis, atrial fibrillation, acute pulmonary oedema, cardiomyopathy and/or death. Results We identified 558 pregnancies in women with uncomplicated RHD (345 women) and 88 pregnancies in women with complicated RHD (60 women). During pregnancy 4.5% of women with uncomplicated RHD and 31.8% of women with complicated RHD experienced new cardiovascular complications. Cardiovascular complication risk was 3 to 6-fold higher during pregnancy than non-pregnancy and did not differ by RHD stage. Conclusions Women with RHD experienced heightened cardiovascular complication risks during pregnancy in alignment with RHD stage at 20 weeks gestation.

Objective: Rheumatic heart disease (RHD) persists in low-middle-income countries and in high-income countries where there are health inequities. RHD in pregnancy (RHD-P) is associated with poorer maternal and perinatal outcomes. Our study examines health care perspectives of models of care for women with RHD-P. Design: Descriptive qualitative study exploring health professionals’ perspectives of care pathways for women with RHD-P. Setting: Australia Population: Nineteen participants from maternal health and other clinical and non-clinical domains related to RHD-P. Methods: Thematic analysis of semi-structured interviews. Results: A constellation of factors challenged the provision of cohesive women-centred care, related to health systems, workforces and culture. 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 and informed decision-making. Conclusions: Pregnancy for women with RHD provides an opportunity to strengthen health system responses, improve care pathways and address whole-of-life health. To respond effectively, structural and cultural changes are required including enhanced investment in education and capacity building – particularly in maternal health – to support a better informed and skilled workforce. Aboriginal Mothers and Babies programs provide useful exemplars to guide respectful effective models of care for women with RHD, with relevance for non-Indigenous women in high-risk RHD communities. For key goals to be met in the context of RHD, maternal health must be better integrated into RHD strategies and RHD better addressed in maternal health.

Background. The issue of identity has been widely explored among migrant populations in western countries in the context of cultural integrations and acculturations. However, there is less evidence on identity as a determinant of health and social wellbeing. This study reports on identity as a determinant of health among the South Sudanese community who arrived as refugees through an Australian humanitarian program in the early 2000s. Methods. A qualitative study was undertaken, underpinned by a phenomenological framework that characterised the lived experiences of adult South Sudanese in Sydney, Australia. Semistructured in-depth interviews explored how 26 participants identified themselves in Australia, including changes in their experiences over time, their social and general life situation in Australia, and how they felt perceived in Australia. Data were audio-recorded using a digital voice recorder, transcribed verbatim, coded, and categorised into themes using interpretive thematic analysis. Results. Participants described a multiplicity of interconnected domains that governed the negotiating and making sense of identity, in turn mediated by other interwoven personal and structural factors that shaped experience and perception. Expressions of hope, pride, and achievement were threaded through several of the interviews, particularly in relation to their children. There were also frustrations related to employment challenges and discrimination that limited identity ownership. Conclusions. The evolving and often conflicting factors identified by participants can shape their sense of belonging, integration, and social and mental wellbeing. A deeper, more nuanced understanding of bicultural identity within a strengths-based framework is needed, with improved partnerships and services to support and strengthen South Sudanese community integration, belonging, and acculturation in Australia.

Background: Respectful maternity care encompasses the right to continuity of care and dignified support for women during the reproductive period, enabling informed choice. However, the evidence is limited in the context of South Asia region where maternal, perinatal and newborn mortality is still a critical challenge to health systems. Evidence is required to better understand the context of respectful maternity care to inform directions for appropriate policy and practice. Objective: The objective of this scoping review was to explore facilitators and barriers of respectful maternity care practice in South Asia. Design: CINAHL, EMBASE, PubMed, Medline, SCOPUS and Cochrane databases were used to identify related studies. Data were systematically synthesized and analysed thematically. Findings: There was considerable heterogeneity in the 61 included studies from seven South Asian countries, with most of the research conducted in Nepal and India. While the experience of abuse and neglect was common, 10 critical themes emerged related to neglected choices and compromised quality of care (particularly where there were health inequities) in the context of institutional care experiences; and the imperative for improved investment in training and significant policy and legislative change to enforce equitable and respectful maternity care practice. Conclusions and Implications for Practice: Evidence about respectful maternity care in South Asia indicates that women accessing professional and facility-based services experienced high levels of disrespect, abuse and maltreatment. Women from vulnerable, socially disadvantaged and economically poor backgrounds were more likely to experience higher level abuse and receive poor quality of care. There is an urgent need for a well-resourced, sustained commitment to mandate and support the provision of respectful and equitable maternity care practice in South Asia.

RHD in pregnancy (RHD-P) is associated with an increased burden of maternal and perinatal morbidity and mortality. A sequellae of rheumatic fever resulting in heart valve damage if untreated, RHD is twice as common in women. In providing an historical overview, this commentary provides context for prevention and treatment in the 21 st century.

Background: The majority of the current South Sudanese population in Australia arrived as refugees in the early 2000s, facing challenges related to dislocation, navigating a new culture while honouring their own own. Much of the research on the South Sudanese experience has been conducted in the early years after arrival, with resettlement stressors likely to influence narratives of identity as new immigrants.This study aimed to understand the lived experiences of identity among South Sudanese who are long-term residents of Australia after fleeing their birth country, migration, and re-building their lives.Methods: The qualitative study was underpinned by a phenomenological framework that characterised the experiences of study participants. Purposive and snowball sampling was used to recruit Sydney-residing adults who arrived in Australia through its humanitarian refugee program 10 or more years ago and were born in South Sudan. Semi-structured interviews explored how participants identified themselves in Australia, changes in their experiences over time, their social and general life situation in Australia, and perceptions (self and other) of South Sudanese people in Australia.Results: The 26 participants from refugee backgrounds all had similar experiences of dislocation, most arriving in Australia 10-19 years ago with family members. Most participants were in employment and had attained (sometimes multiple) educational qualifications.Participants described a multiplicity of interconnected domains that governed the negotiating and making sense of identity. Three key themes were identified: mutable identities - dependent on context; Identity in relation to children; and the influence of limited opportunities. These themes were mediated by other interwoven personal and structural factors that shaped experience and perception. Expressions of hope, pride and achievement were threaded through several of the interviews, particularly in relation to their children. There was also frustration related to employment challenges and discrimination that limited identity reconstruction.Conclusions: Our exploration of long-term lived experiences for South Sudanese migrants highlights the evolving and often conflicting factors that shape domains of integration and identity construction. The deeper, more nuanced understandings of bicultural identity within a strengths-based framework calls for better partnerships and services to support strengthened community and acculturalisation.

Rheumatic heart disease (RHD) persists in low-middle-income countries and in high-income countries where there are health inequities. RHD in pregnancy (RHD-P) is associated with poorer maternal and perinatal outcomes. Our study examines models of care for women with RHD-P from the perspectives of health care providers. A descriptive qualitative study exploring Australian health professionals’ perspectives of care pathways for women with RHD-P. Thematic analysis of semi-structured interviews with nineteen participants from maternal health and other clinical and non-clinical domains related to RHD-P. A constellation of factors challenged the provision of integrated women-centred care, related to health systems, workforces and culture. Themes that impacted on the provision of quality woman-centred care 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 and informed decision-making. Pregnancy for women with RHD provides an opportunity to strengthen health system responses, improve care pathways and address whole-of-life health. To respond effectively, structural and cultural changes are required including enhanced investment in education and capacity building – particularly in maternal health – to support a better informed and skilled workforce. Aboriginal Mothers and Babies programs provide useful exemplars to guide respectful effective models of care for women with RHD, with relevance for non-Indigenous women in high-risk RHD communities. For key goals to be met in the context of RHD, maternal health must be better integrated into RHD strategies and RHD better addressed in maternal health.