Bridging the gap between science and indigenous cosmologies: Rheumatic Heart Disease Champions4Change

Keywords: acute rheumatic fever, culturally appropriate care, indigenous health, peer support, rheumatic heart disease.

Group A Streptococcus can result in post-infectious sequelae including acute rheumatic fever (ARF), and rheumatic heart disease (RHD). The link between streptococcal pharyngitis and impetigo, and the diverse manifestations of ARF – chorea, sore joints and damaged heart valves – can be very challenging to explain and understand. This is compounded in Australia’s high-risk settings (remote areas, poor housing and infrastructure) where there might be language barriers and diverse cultural knowledges relating to illness causation and germ theory. Breaking down these complexities for communities is a critical part of disease prevention, empowerment and health literacy.

The Champions4Change program is an Australia-wide network of community members affected by acute rheumatic fever (ARF) or rheumatic heart disease (RHD), established in 2018 by Rheumatic Heart Disease Australia. Champions are people with ARF or RHD, or someone caring for them. Champions share personal stories and insights, and inspire others whose lives are affected by ARF/RHD. The name was chosen to describe who champions are and what they represent: ‘Champions4Change – sharing, caring and inspiring’. Champions4Change is the first program of its kind in Australia. It aims to privilege and promote the voices of its Champions, acknowledge and respect Aboriginal cosmologies (world views), support Champions in their lives and work, and put culture, country and community at the centre of responses to RHD.

Chronic disease peer support programs have demonstrated a wide range of benefits including high levels of satisfaction by participants, increased health knowledge, improved social support and social connectedness, emotional wellbeing and reductions in patient care time required by health professionals.^1–3 Within Australia, Aboriginal community and family support programs have been implemented across diverse care settings and health conditions including cancer, diabetes, asthma, child and maternal health and drug and alcohol and sexual health.^4–7

Among Aboriginal people in the Northern Territory, where language diversity is amongst the highest in the world, there is a real need to provide accessible information and more support for ARF and RHD.^8,9 In Uganda, a RHD peer-support program showed improved health-related quality of life scores improving social connectedness.¹⁰

In Australia a small, pilot peer group of young Aboriginal people from the Darwin area brought participants closer, feeling supported by each other.¹¹

Conventional health promotion messages sometimes assume that information is enough to modify behaviour. There is now considerable evidence demonstrating that health promotion in Aboriginal contexts is most effective when based on principles of self-determination including co-design and community-focused actions. Moving beyond standard principles of health promotion, Champions4Change draws on cultural cosmologies – that is, an appreciation of diverse Aboriginal world views and understanding of the functions of the universe – to provide a strengths-based approach. This supports and activates existing strengths, and develops abilities and critical thinking skills to facilitate action for change and a greater sense of control.¹²

Improving access to information, support and self-management capacity are important in improving the lived experience of ARF and RHD.¹³ In a study promoting delivery of penicillin for secondary prevention of ARF, positive community engagement was recognised as a key required strategy to achieve success.⁸

Champions have the potential to play a critical role in closing the gap in health care for Aboriginal and Torres Strait Islander peoples with ARF or RHD. The Champions share and translate the meaning of health from an Aboriginal perspective into ways that allow service providers to understand what it is like to be living with ARF or RHD. This two-way learning drawing on ‘lived experience’ both empowers the community and benefits the health service, providing critical insights for healthcare providers into the everyday realities of ARF/RHD.

Our approach with Champions4Change is to look beyond the biomedical model to the cultural, political and environmental factors that underpin these medical conditions.

The Champions developed a model, ‘Keeping Our Campfires Burning’ (Fig. 1), to describe the vision and implementation of the program. They wanted a clear message about staying strong in culture and feeling connected, to look after themselves, their families and communities. The model has seven elements representing the whole, in keeping minds and bodies connected and strong. We are all connected to the fire like embers rising from the fire. These elements keep our fires alive and burning.

Fig. 1.  Keeping our Campfires Burning model.

To work effectively with Aboriginal and Torres Strait Islander communities, acknowledgement and understanding of the unique cultures of First Nations peoples is needed. As some of the oldest living cultures on this planet, the richness, diversity and complexities of our cultures needs to be appreciated in a respectful and competent way. It is also necessary to acknowledge the impacts that colonisation has had, and continues to have, on the health and wellbeing of Aboriginal and Torres Strait Islander peoples.¹⁴

Champions4Change draw on their cultural knowledge to bring a richer understanding of what it truly means to be living with ARF and RHD. Champions, comprising culturally diverse Australian First Nations community members, draw strength from their own complex social structures which define roles and responsibilities to keep communities functioning safely. These roles include passing on and sharing knowledge, a process at the heart of traditional Aboriginal culture based on the kinship system.

Despite recent advances in the biomedical treatment of RHD, the associated health benefits at a population and community level have not been fully realised for Aboriginal and Torres Strait Islander peoples. Devastating health outcomes still occur in young people. Many of the barriers to better health sit outside the biomedical domain, driven by cultural, political and environmental factors. These challenges – the legacies of colonisation – require a shift in public health and research imperatives to generate healthy societies.¹⁵

There is significant power in the ability of personal stories to create understanding and change minds. For many years data showing high morbidity and mortality associated with ARF and RHD were presented in the medical literature and at conferences. The figures roll off the tongue like a mantra. The Champions provide an opportunity to put a face to the statistics, telling first-hand the stories of being diagnosed with and living with ARF or RHD: stories about caring for a young child with the condition; the challenges of interacting with the healthcare system; critical insights that healthcare providers, policy makers and politicians need to hear. In a clinical environment, patients lack empowerment or opportunity to provide their story as they are rushed through a list of questions about signs and symptoms and whether they are adhering to treatment. Champions4Change provide an avenue to redress the balance. They are regularly invited to address health conferences at which moving experiences of the devastating impacts of these conditions are shared.

Chief among their efforts, Champions make sure that culture, language and understandings shape local health messaging. This is critical, for example, in places like Maningrida in the NT, one of the most linguistically diverse communities in the world, with 15 languages spoken and a high burden of RHD. Acknowledging the achievements of Champions in developing innovative multi-lingual education and awareness programs, Champions4Change was featured as an ‘Aboriginal and Torres Strait Islander-led transformation’ in the 2022 Close the Gap report.¹⁶

Champions4Change identified the need for culturally appropriate resources they can use within their communities. We developed, co-designed and attracted seed funding for a project currently underway called The Dillybag Project. The resources being developed, in English and selected Aboriginal languages, will help fill the gap in essential information about ARF and RHD. Content is fully designed for and by the communities living with, and at risk of ARF and RHD. Educational workshops will support the use of resources in communities for the Champions. The Dillybag project is designed to:

1. Improve awareness and knowledge of what causes ARF and RHD and how to prevent ARF and RHD reflecting best practice care.

2. Improve confidence and capability of individuals and communities to make informed decision about their care.

3. Produce resources to improve community and health professional education and training.

4. Be the foundation of a health promotion campaign.

Champion Anne-Marie from Barunga worked with a leading national children’s entertainer, Justine Clarke, and school children in her community, to create a music video called ‘Boom Boom’ (https://www.youtube.com/watch?v=X7HqzJafAr8). The video contains RHD prevention messages and was made in partnership with Skinnyfish music, END RHD, Menzies School of Health Research and Bupa Foundation. It has been shared widely on social and mainstream, receiving positive local feedback.¹⁷

The Lúrra RHD project arose during a medical research project in which community echocardiographic screening of children was being conducted in Maningrida and surrounding homelands.¹⁸ Recognising the need for local language resources, a set of lessons on RHD for school students was developed by the school’s Language and Culture Team, an experienced community health educator, and locally based Champions4Change, to create a curriculum of lessons on core RHD primary health messages in local languages. The units cover body systems such as the circulatory and immune systems, and germ theory of disease. Key primary and environmental health care messages are embedded throughout.

In Australia, RHD is a First Nations health issue. Solutions must be informed by First Nations peoples. Champions4Change provides a unique mechanism to bridge the divide between community needs and knowledge, and Western medical approaches to ARF and RHD prevention and management. Two-way learning that informs health services and empowers community members is a crucial part of the journey towards RHD elimination. Programs such as Champions4Change have been shown, both internationally and nationally, to assist hard to reach communities with complex social and cultural needs. Achievements of Champions4Change to date highlight the unique role community members with lived experiences of RHD can play. Sustained funding to continue and expand our work is a priority.

Data sharing is not applicable as no new data were generated or analysed during this study.

This research did not recieve funding.

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.