A community-based program to reduce acute rheumatic fever and rheumatic heart disease in northern Australia.

BACKGROUND: In Australia's north, Aboriginal peoples live with world-high rates of rheumatic heart disease (RHD) and its precursor, acute rheumatic fever (ARF); driven by social and environmental determinants of health. We undertook a program of work to strengthen RHD primordial and primary prevention using a model addressing six domains: housing and environmental support, community awareness and empowerment, health literacy, health and education service integration, health navigation and health provider education. Our aim is to determine how the model was experienced by study participants. METHODS: This is a two-year, outreach-to-household, pragmatic intervention implemented by Aboriginal Community Workers in three remote communities. The qualitative component was shaped by Participatory Action Research. Yarning sessions and semi-structured interviews were conducted with 14 individuals affected by, or working with, ARF/RHD. 31 project field reports were collated. We conducted a hybrid inductive-deductive thematic analysis guided by critical theory. RESULTS: Aboriginal Community Workers were best placed to support two of the six domains: housing and environmental health support and health navigation. This was due to trusting relationships between ACWs and families and the authority attributed to ACWs through the project. ACWs improved health literacy and supported awareness and empowerment; but this was limited by disease complexities. Consequently, ACWs requested more training to address knowledge gaps and improve knowledge transfer to families. ACWs did not have skills to provide health professionals with education or ensure health and education services participated in ARF/RHD. Where knowledge gain among participant family members was apparent, motivation or structural capability to implement behaviour change was lacking in some domains, even though the model was intended to support structural changes through care navigation and housing fixes. CONCLUSIONS: This is the first multi-site effort in northern Australia to strengthen primordial and primary prevention of RHD. Community-led programs are central to the overarching strategy to eliminate RHD. Future implementation should support culturally safe relationships which build the social capital required to address social determinants of health and enable holistic ways to support sustainable individual and community-level actions. Government and services must collaborate with communities to address systemic, structural issues limiting the capacity of Aboriginal peoples to eliminate RHD.

Using community-led development to build health communication about rheumatic heart disease in Aboriginal children: a developmental evaluation.

OBJECTIVE: A high prevalence of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) among Aboriginal children in northern Australia is coupled with low understanding among families. This has negative impacts on children's health, limits opportunities for prevention and suggests that better health communication is needed. METHODS: During an RHD echocardiography screening project, Aboriginal teachers in a remote community school created lessons to teach children about RHD in their home languages, drawing on principles of community-led development. Access to community-level RHD data, previously unknown to teachers and families, was a catalyst for this innovative work. Careful, iterative discussions among speakers of four Aboriginal languages ensured a culturally coherent narrative and accompanying teaching resources. RESULTS: The evaluation demonstrated the importance of collective work, local Indigenous Knowledge and metaphors. As a result of the lessons, some children showed new responses and attitudes to skin infections and their RHD treatment. Language teachers used natural social networks to disseminate new information. A community interagency collaboration working to prevent RHD commenced. Conclusions and implications for public health: Action to address high rates of RHD must include effective health communication strategies that value Indigenous Knowledge, language and culture, collaborative leadership and respect for Indigenous data sovereignty.

Decolonizing Indigenous health: Generating a productive dialogue to eliminate Rheumatic Heart Disease in Australia.

In common with colonized Indigenous people worldwide, many Australian Aboriginal people experience inequitable health outcomes. While the commitment and advocacy of researchers and health practitioners has resulted in many notable improvements in policy and practice, systemic and structural impediments continue to restrain widespread gains in addressing Indigenous health injustices. We take Rheumatic Heart Disease (RHD), a potent marker of extreme health inequity, as a case study, and critically examine RHD practitioners' perspectives regarding the factors that need to be addressed to improve RHD prevention and care. This study is an important explanatory component of a broader study to inform new clinical practices, and health system strategies and policies to reduce RHD. A decolonising, critical medical anthropology (CMA) analysis of findings from 22 RHD practitioner in-depth interviews conducted in May 2016 revealed both practitioners' perceptions of health system shortcomings and a sense of hopelessness and powerlessness to transform existing health system inequities, the negative impacts of which were subsequently confirmed in a separate study of RHD patients' lived realities. We reveal how biomedical dominance, normalized deficit discourses and systemic racism influence the current policy and practice landscape, narrowing the intercultural space for productive dialogue and reinforcing the conditions that cause disease. To counter biomedical approaches that contribute to existing health inequities in health care, we recommend localized, strength-based, community-led research projects focused on actions that use critical decolonizing social science approaches to achieve system change. We demonstrate the importance of integrating biological and social sciences approaches in research, education/training, and practice to: 1) be guided by Indigenous strengths, knowledges and worldview, and 2) adopt a critical reflexive stance to examine systems, structures and practices. Such an approach facilitates productive cross-cultural dialogue and social transformation; providing direction and hope to practitioners, enhancing their knowledge, skills and capacity and improving Aboriginal health outcomes.

Ending rheumatic heart disease in Australia: the evidence for a new approach.

■The RHD Endgame Strategy: the blueprint to eliminate rheumatic heart disease in Australia by 2031 (the Endgame Strategy) is the blueprint to eliminate rheumatic heart disease (RHD) in Australia by 2031. Aboriginal and Torres Strait Islander people live with one of the highest per capita burdens of RHD in the world. ■The Endgame Strategy synthesises information compiled across the 5-year lifespan of the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE). Data and results from priority research projects across several disciplines of research complemented literature reviews, systematic reviews and narrative reviews. Further, the experiences of those working in acute rheumatic fever (ARF) and RHD control and those living with RHD to provide the technical evidence for eliminating RHD in Australia were included. ■The lived experience of RHD is a critical factor in health outcomes. All future strategies to address ARF and RHD must prioritise Aboriginal and Torres Strait Islander people's knowledge, perspectives and experiences and develop co-designed approaches to RHD elimination. The environmental, economic, social and political context of RHD in Australia is inexorably linked to ending the disease. ■Statistical modelling undertaken in 2019 looked at the economic and health impacts of implementing an indicative strategy to eliminate RHD by 2031. Beginning in 2019, the strategy would include: reducing household crowding, improving hygiene infrastructure, strengthening primary health care and improving secondary prophylaxis. It was estimated that the strategy would prevent 663 deaths and save the health care system $188 million. ■The Endgame Strategy provides the evidence for a new approach to RHD elimination. It proposes an implementation framework of five priority action areas. These focus on strategies to prevent new cases of ARF and RHD early in the causal pathway from Streptococcus pyogenes exposure to ARF, and strategies that address the critical systems and structural changes needed to support a comprehensive RHD elimination strategy.

Hyperendemic rheumatic heart disease in a remote Australian town identified by echocardiographic screening.

OBJECTIVES: Using echocardiographic screening, to estimate the prevalence of rheumatic heart disease (RHD) in a remote Northern Territory town. DESIGN: Prospective, cross-sectional echocardiographic screening study; results compared with data from the NT rheumatic heart disease register. SETTING, PARTICIPANTS: People aged 5-20 years living in Maningrida, West Arnhem Land (population, 2610, including 2366 Indigenous Australians), March 2018 and November 2018. INTERVENTION: Echocardiographic screening for RHD by an expert cardiologist or cardiac sonographer. MAIN OUTCOME MEASURES: Definite or borderline RHD, based on World Heart Federation criteria; history of acute rheumatic fever (ARF), based on Australian guidelines for diagnosing ARF. RESULTS: The screening participation rate was 72%. The median age of the 613 participants was 11 years (interquartile range, 8-14 years); 298 (49%) were girls or women, and 592 (97%) were Aboriginal Australians. Definite RHD was detected in 32 screened participants (5.2%), including 20 not previously diagnosed with RHD; in five new cases, RHD was classified as severe, and three of the participants involved required cardiac surgery. Borderline RHD was diagnosed in 17 participants (2.8%). According to NT RHD register data at the end of the study period, 88 of 849 people in Maningrida and the surrounding homelands aged 5-20 years (10%) were receiving secondary prophylaxis following diagnoses of definite RHD or definite or probable ARF. CONCLUSION: Passive case finding for ARF and RHD is inadequate in some remote Australian communities with a very high burden of RHD, placing children and young people with undetected RHD at great risk of poor health outcomes. Active case finding by regular echocardiographic screening is required in such areas.

Community-based participatory action research on rheumatic heart disease in an Australian Aboriginal homeland: Evaluation of the 'On track watch' project.

Strategies to date have been ineffective in reducing high rates of rheumatic heart disease (RHD) in Australian Aboriginal people; a disease caused by streptococcal infections. A remote Aboriginal community initiated a collaboration to work towards elimination of RHD. Based in 'both-way learning' (reciprocal knowledge co-creation), the aim of this study was to co-design, implement and evaluate community-based participatory action research (CBPAR) to achieve this vision. Activities related to understanding and addressing RHD social determinants were delivered through an accredited course adapted to meet learner and project needs. Theory-driven evaluation linking CBPAR to empowerment was applied. Data collection comprised focus groups, interviews, observation, and co-development and use of measurement tools such as surveys. Data analysis utilised process indicators from national guidelines for Aboriginal health research, and outcome indicators derived from the Wallerstein framework. Findings include the importance of valuing traditional knowledges and ways of learning such as locally-meaningful metaphors to explore unfamiliar concepts; empowerment through critical thinking and community ownership of knowledge about RHD and research; providing practical guidance in implementing empowering and decolonising principles / theories. Lessons learned are applicable to next stages of the RHD elimination strategy which must include scale-up of community leadership in research agenda-setting and implementation.

"That Heart Sickness": Young Aboriginal People's Understanding of Rheumatic Fever.

High rates of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia predominate in young Aboriginal people highlighting underlying racial and equity issues.  This article focuses on the perceptions of the disease among young Aboriginal people living in remote Australia. Participant understanding was constrained by clinicians' use of language rooted in biomedicine and delivered through English, a second language for all participants. Clinicians' communicative competency is a social determinant of Aboriginal health. We recommend that the use of Aboriginal languages be prioritized in health services caring for Aboriginal people and that biomedical dominance in the services be relinquished.

Transition to adult care for Aboriginal children with rheumatic fever: a review informed by a focussed ethnography in northern Australia.

Aboriginal children in northern Australia have high rates of rheumatic fever and rheumatic heart disease, which are chronic conditions because of the need for long-term treatment and monitoring. This article critically reviews the literature on transition to adult care for children with chronic conditions and considers applicability to the care of these children. The review was merged with findings from a focussed ethnography conducted in four remote Aboriginal communities with young people who have these conditions. Transition care aims to support adolescents on a healthcare trajectory to facilitate best long-term health and personal outcomes. Characteristics of the two medical conditions, the children and their local health services in northern Australia were generalised and merged with principles from the transition care literature, including policies governing transition clinics in urban locations. In this setting, the challenge is to transition Aboriginal children safely through to adulthood without rheumatic heart damage rather than to a separate health service on reaching adulthood. Recommended tailoring of transition care involves engaging and valuing local navigators who can address language and cultural barriers to provide a sustainable alternative to transition coordinators in mainstream programs. This has potential to improve care without further burdening overstretched clinical resources.

Aboriginal children and penicillin injections for rheumatic fever: how much of a problem is injection pain?

OBJECTIVE: To explore young Aboriginal people's and clinicians' experiences of injection pain for the 10 years of penicillin injections children are prescribed to prevent rheumatic fever recurrences. METHODS: Aboriginal children on the penicillin regimen and clinicians were purposively recruited from four remote sites in Australia. Semi-structured interviews and participant observations were conducted. Views were synthesised and thematically analysed. RESULTS: A total of 29 Aboriginal children and 59 clinicians were interviewed. Sixteen participants appeared to become accustomed to the injection pain, eight did not find pain an issue, and five found injection pain difficult. A further five believed the injections made them unwell. Patients expressed varying abilities to negotiate with clinicians about the use of pain reduction measures. Clinicians revealed good knowledge of pain reduction measures, but offered them inconsistently. All clinicians found administering the injections distressing. CONCLUSION: Repeated painful procedures in children necessitate well-planned and child-focused care. Current practices are not in line with guidance from the Royal Australasian College of Physicians about effects of repeated painful procedures on children. Initiating the long-term injection regimen for rheumatic fever is a special event requiring expert input. A newly reported finding of a subset of young people feeling unwell after receiving the injection requires further investigation. Implications for public health: Improvement of local and jurisdictional guidelines on use of pain reduction measures for children who have been prescribed repeated painful injections for rheumatic fever is needed.