1 Introduction

Rheumatic heart disease (RHD) is valvular heart damage that can develop after acute rheumatic fever (ARF), an immune reaction to a group A streptococcal infection. Australian rural and remote residents are disproportionately affected by RHD and face challenges accessing care compared to urban residents [1, 2]. RHD-related mortality rates are declining globally; however, in Australia, preventable RHD deaths continue to occur and are particularly high among Aboriginal and Torres Strait Islander peoples (hereafter, respectfully, ‘Aboriginal’) [3-5]. Consequently, considerable Australian research in the last decade has investigated RHD acquisition and progression in Aboriginal communities [6-8] to reduce RHD-associated morbidity and mortality.

Examination of the structural drivers of ill health has emerged as a priority for RHD prevention, notably as an alternative to deficit discourse, in which behaviours of Aboriginal people are blamed for poor health outcomes [9, 10]. Guiding documents, including the Australian ARF and RHD Guidelines [11] and the RHD Endgame Strategy [12], outline recommendations to avoid RHD harms. Central to these is the importance of health system improvements, including cultural safety, embedding environmental health in primary care, and building the Aboriginal health workforce. These recommendations stem from research into the lived experiences of people with RHD, who face significant barriers to accessing best-practice RHD care [13, 14]. The impact of health system failures is highlighted in several recent publications and high-profile coronial inquiries, including the RHD Doomadgee cluster in Queensland and the death of Mr. Yeeda in Western Australia (WA) [15-17].

Guideline-recommended treatment for people with ARF or RHD is multifaceted, including ongoing frequent contact with primary and specialist healthcare providers [11]. Treatment includes regular secondary prophylaxis penicillin (BPG) injections, ongoing echocardiographic monitoring, and may also include surgery, medication, dental, and specialist pregnancy care. Jurisdictional RHD control programs have been established throughout Australia to support providers in better detecting, monitoring, and treating RHD and ARF. The WA RHD Register (hereafter ‘WA register’) was established in 2009 and is managed by the WA Country Health Service on behalf of the state [18].

Despite Australia's universal publicly funded health system and the above strategies, deaths from RHD continue to occur. The Queensland Coroner found that fractured relationships between health services, barriers to information sharing, and difficulties retaining skilled and culturally competent staff contributed to the RHD-related deaths of three young Aboriginal women in 2019 and 2020 [15]. The WA Coroner found that communication challenges between health services and limited availability of culturally safe services contributed to missed opportunities for RHD treatment in the case of the 2018 death of Mr. Yeeda [16]. These coronial inquiries add to lived experience research findings that Australian health systems tend to provide individually focused RHD care that does not incorporate the worldviews of Aboriginal patients, many of whom are children and young people, or adequately involve their families and communities in decision-making [13].

The narratives around these high-profile deaths and qualitative research regarding system failures are reflected in quantitative studies reporting higher RHD mortality rates among Aboriginal people compared to non-Aboriginal people, with substantial differences between 25 to 44-year-olds from these groups [4, 5]. However, few studies describe RHD mortality in WA specifically or examine WA's RHD service delivery context. Two WA studies examining data from the late 1990s to early 2000s found high RHD mortality among Aboriginal people but included Kimberley residents only [19, 20]. Other RHD mortality research aggregates mortality in WA with other jurisdictions and focuses on the Northern Territory where RHD prevalence is highest [4, 5, 21]. Between 2012 and 2022, age-standardised RHD-related mortality was 14.9 deaths per 100,000 person-years for Aboriginal people aged < 65 in WA, a rate 38 times higher than that in non-Aboriginal people [Table S1].

To date, quantitative studies focussed on RHD-related mortality have not integrated qualitative data or theoretical perspectives such as Critical Race Theory or Standpoint Theory, narrowing contextual understanding of the statistics reported [22]. Therefore, the aim of the present study was to integrate quantitative WA Register information regarding RHD-related deaths between 2012 and 2021 with qualitative interview data from RHD stakeholders to identify system-level opportunities for the prevention of RHD-related mortality in the WA health care setting. The specific objectives were to (i) describe clinical and demographic characteristics of RHD patients aged < 65 years from the WA Register, stratified by vital status and (ii) examine perspectives of practitioners working with RHD patients and their families regarding factors within the WA healthcare system that may contribute to or prevent RHD-related mortality.

2 Methods

3 Results

3.4 Characteristics of Deceased Group

Among the deceased group, the median age at death was 45.5 (ranging from 15 to 64 years), with four deaths in under 25-year-olds [Table 1]. Most were Aboriginal (98%) and half were female. Most (82%) had their primary healthcare provider in the Kimberley or Pilbara. The median age at RHD diagnosis was 31.5 years, and only 40% had a recorded ARF diagnosis. Almost half of the group (n = 28, 47%) had received surgery—a total of 47 RHD surgical procedures were performed, with over three quarters of these being valve replacements.

The number of deaths increased across the ten-year period, from two deaths in 2012 to 12 deaths in 2021 (Figure 1). Overall, 57% of deaths had no known cause recorded in the register, while 15% were RHD-related and 28% were not directly related to RHD. The recorded cause of death increased over the study period.

Severe RHD at the most recent echocardiogram was recorded for 73% of the deceased group, and the median time since the most recent echocardiogram was 556 days. Only 23% of those with severe RHD had an echocardiogram within six months before study exit, the guideline for patients in this category [11]. One quarter of those with severe RHD had seen a specialist in the six months before their death.

Noting small counts, Figure 2 suggests regional differences in the time since health contacts among the deceased group. For echocardiograms and specialist review, RHD patients in ‘other regional’ areas had the shortest time since the most recent contact, with over 50% seen within one year. Conversely, RHD patients in the Pilbara had the longest time since health contacts, with seven of nine people having more than two years since their most recent echocardiogram and six having more than two years since their most recent specialist review, or none recorded at all. Among Kimberley cases who died, 75% and 68% received echocardiograms or specialist reviews within the two years prior, respectively.

3.5 Qualitative Analysis

Of 24 stakeholders approached to participate, nine consented to an interview. Details of interviewees are outlined in Table 2. Seven interviewees were based in WA, and two were based in other jurisdictions but had experience working with WA RHD patients.

TABLE 2. Characteristics of interview participants, 2022–2023.

Characteristic	Participants (n)
Total	9
Women	6
Men	3
Aboriginal	3
Non-Aboriginal	6
Experiencea
Primary care	6
Specialist care	2
Care coordination	1
Patient advocacy	2
Research	3

• ^a Participants with experience across multiple sectors are included in more than one category.

Themes emergent in the interview data focus on the delivery of appropriate care to RHD patients [Figure 3]. Interviewees explained that missing secondary prophylaxis, echocardiography, or specialist review could result in unmonitored disease progression, and that access to surgical intervention and holistic follow-up care was vital for patients with severe RHD. Interviewees stressed the importance of rapid intervention for acutely unwell RHD patients. The barriers to care and drivers of appropriate care are described in detail below. Aboriginal status is identified alongside interviewee quotes below, but no further details are provided to maintain confidentiality.

3.5.1 Logistical Access Barriers

Interviewees described how health services in WA face practical constraints in reaching RHD patients.

Physical distance was a frequently cited barrier, as RHD patients residing in rural and remote areas face long and daunting journeys to travel to health services, often complicated by transport availability, additional expenses, and weather. This difficulty was highlighted by one Aboriginal interviewee who spoke about investing significant resources to get a patient to the airport, only for them to be turned away because of incorrect footwear. However, another interviewee emphasised that physical proximity alone could not facilitate access and that “some of the most disengaged clients we have live two minutes from this hospital”[non-Aboriginal].

Interviewees spoke about the importance of mobile cardiology clinics, which provide semi-regular specialist services and echocardiography to rural areas across WA, improving access for remote patients who would otherwise need to travel to Broome or Perth for these services. However, interviewees also discussed the constraints of visiting services, including their limited frequency and locations. One interviewee noted that visiting clinicians tended to “sit in the consulting room and expect people to come”[non-Aboriginal], which was not sufficient to ensure access. Several interviewees noted that the establishment of permanent cardiology services across rural WA would be preferable but perceived that this was unfeasible.

Other logistical barriers mentioned included the difficulty of contacting patients who may not have a fixed address, phone number, or internet access to organise appointments; and the challenge of providing comprehensive care to RHD patients in prison due to limited integration between health and justice medical systems.

3.5.2 Socio-Cultural Access Barriers

Interviewees outlined a range of socio-cultural barriers that RHD patients face when accessing health services, even if logistical challenges can be overcome, with Aboriginal RHD patients in particular facing complex barriers.

Several interviewees remarked that Aboriginal knowledge systems do not align with a biomedical framework. Where health providers do not have the cultural understanding or time to explain the need for ongoing RHD treatment in a meaningful way for Aboriginal patients, the value of RHD care may not be fully understood and seeking out care is not prioritised. This is exacerbated when patients are not experiencing RHD symptoms, or “if you're a young, otherwise fit person who doesn't think of yourself as someone with a chronic illness”[non-Aboriginal]. Interviewees noted that this barrier was especially prevalent among adolescents.

The importance of meeting cultural obligations and managing other complex family demands were also discussed as barriers to RHD care for Aboriginal patients/families/carers. Interviewees noted that RHD appointments were “taking people away from their own life”[non-Aboriginal], and that sorry business (funeral/bereavement obligations) and caring responsibilities often take precedence. Interviewees noted that Aboriginal RHD patients “live in varying degrees of complex life and dysfunction”[Aboriginal], and may be experiencing family violence, poverty, difficulty with school engagement, and other non-RHD health conditions simultaneously, making healthcare access challenging.

Interviewees spoke about how fear of a poor or culturally unsafe health care experience was a barrier to care. The pain associated with BPG injections can make patients reluctant to return, especially young children and their families. Surgical procedures in unfamiliar hospitals can be particularly daunting, especially where patients “believe that hospitals are a place to go to die, due to generational trauma”[non-Aboriginal]. However, routine appointments can also be traumatic if providers are not perceived to be respectful, kind and empathetic. One interviewee commented that “some nurses feel that…they're a bit better than an Aboriginal person and they growl at them, and talk to them like a child…and that makes fear”[Aboriginal].

3.5.3 Barriers to Quality of Care

Even when RHD patients overcome barriers to access a service, the care provided may be regarded as inadequate. All nine interviewees mentioned transient workforce impacts, with new or shorter-term staff frequently struggling to recognise and understand RHD, which is rarely seen in metropolitan settings. This results in missed opportunities for diagnosis and ongoing management, because “they just might not be aware of how detrimental [RHD] can be to somebody if they're left unmonitored”[Aboriginal]. Several interviewees also spoke about how racial bias could affect care, including Aboriginal patients being stereotyped as drug-seeking or alcohol-affected when they attend hospital; treatment being refused even after repeat visits; or health providers “giving up on our mob without understanding the reasons behind why they may be not showing up to an appointment”[Aboriginal].

3.5.4 Motivated Staff and Providers

While barriers are significant, interviewees spoke about how motivated staff “with a massive care factor”[Aboriginal] are working actively to overcome challenges and connect RHD patients with appropriate treatment. Building trusting relationships with RHD patients and their families was perceived as vital by interviewees, who described this as involving patients in shared decision-making about treatments; providing outreach “embedded in the community as opposed to in a health setting”[non-Aboriginal]; and being “emotionally motivated”[non-Aboriginal] to improve patient outcomes. The strength of Aboriginal community-controlled services in providing culturally safe care and maintaining strong relationships with RHD patients was highlighted.

Building strong relationships with other health services was also discussed as an important factor facilitating access to care, with interviewees describing how these relationships allowed for vital cooperation between primary and community health, hospitals, visiting clinics, and specialists.

Health practitioners described taking steps to improve their knowledge and professional expertise in RHD to improve care delivery. Interviewees with experience in primary care spoke about training in specialised techniques for BPG injections; learning about their communities to inform their approach to care; and discussed the importance of current initiatives to implement non-expert echocardiography screening services [23]. Scientific and treatment delivery advances such as a Strep A vaccine in development, virtual reality headsets to distract patients from the pain of an injection, and new technologies to improve BPG administration were raised as “game changers”[non-Aboriginal] with the potential to improve patient outcomes.

3.5.5 System Supports Needed

While the motivation, commitment, and continued energy of health staff were perceived to reduce barriers, interviewees emphasised that systemic changes are needed to ensure the sustainable provision of high-quality care.

Interviewees observed that the health system is adept at providing high-acuity care to seriously unwell RHD patients, including heart surgeries and emergency transport. However, they perceived that insufficient funding was directed to earlier intervention; “there is a huge focus on worst case scenario as opposed to that primordial prevention in our health system”[non-Aboriginal]. Interviewees consistently explained that poor housing drives RHD progression, and expressed frustration that this was not being adequately addressed; “Our government should be ashamed of themselves, thinking it's ok for people to live like that”[Aboriginal]. Surgical treatments were seen as futile in this context: “it seems stupid that you're repairing their valves and then putting them back in that environment that causes acute rheumatic fever”[Aboriginal]. Increased funding for environmental health programs was suggested by multiple interviewees as a priority for reducing poor RHD outcomes.

Several interviewees emphasised that greater empowerment of the Aboriginal health workforce in WA would improve RHD outcomes. This included increasing the scope and responsibilities of Aboriginal Liaison Officers and Aboriginal Health Workers, who “often feel like they're just transport officers”[non-Aboriginal] despite wanting to have a greater role in decision-making and care provision. One interviewee stressed that “unless they're empowered…unless people listen to them, their role is just decoration”[non-Aboriginal].

Enabling more systematic information sharing, and establishing operational responsibility for follow-up, were also suggested as vital for strengthening the health system's ability to track and treat RHD patients. Primary health staff spoke about the fragility of current systems, which largely rely on individual staff member initiative. They felt personally responsible for patient follow-up and established their own methods to do this, because “there's no real recall system…no-one is seeking [patients] out”[non-Aboriginal]. Information from the WA Register was perceived as useful, but difficult and time-intensive to access. Automated reminders, improvements to regional RHD coordination, and “a nurse that is just allocated to RHD alone”[Aboriginal] in high-burden locations were suggested to improve patient follow-up.

Interviewees noted that funding for RHD education and management programs that are community-led, and “embedded with community and cultural meaning”[Aboriginal] was essential to improve RHD outcomes and connect patients with care.

4 Discussion

Aligned with a Critical Race Theory perspective, evidence generated by this study demonstrates that weak connections between patients and health systems negatively impact best-practice healthcare, likely contributing to RHD-related mortality in WA. RHD mortality among WA Aboriginal people [Tables S1–S3] is similar to that previously reported in Australia, with high premature mortality compared to the non-Aboriginal population, even among young people [4, 5, 19, 20, 24]. Analysis of the WA register for 2012–2021 revealed 60 deaths among under 65-year-olds, 59 of whom were Aboriginal. Each of these deaths represents a person who died prematurely from a preventable disease, with profound impacts for their families and communities. Interviewees expressed that healthcare access barriers permeate the RHD landscape in WA, making it challenging for RHD patients to receive best-practice care. The story of Mr. Yeeda, who died from RHD at 19 years old, places these mortality statistics and healthcare delivery experiences in context and draws attention to the need for systemic change in WA [16].

Limited health service contacts among the deceased group were observed in the WA register analysis; this is supported by the qualitative findings regarding weak connections between health services and patients. This is consistent with previously reported associations between experiencing RHD-related complications and lack of recorded ARF in young Australians [24]. Rather than contradicting the well-evidenced link between ARF and RHD aetiology, this relationship is indicative of a population for whom opportunities for early intervention, including diagnosis and treatment of Strep A infections, ARF diagnosis, RHD monitoring, and secondary prophylaxis, have been limited or missed entirely. Barriers to accessing early intervention and healthcare are heightened for Aboriginal people with RHD, for whom practical challenges are exacerbated by ongoing impacts of colonisation, including fear and mistrust of a biomedical system that often provides care in a manner inconsistent with their values, knowledge systems and priorities [13, 14, 17]. Australian research has reported, for example, fear of child removal as a strong motivator against seeking care among Aboriginal people [13, 25]. As a condition that often affects children and for which families can feel unfairly blamed, access to RHD care may be particularly impacted by this. In this context, the value of the Aboriginal community-controlled health sector and RHD programs that are governed by and designed for Aboriginal communities is clear.

A range of intersecting challenges were identified in the qualitative analysis as potential contributors to the weak connections between patients and appropriate care, including geographical distance from health services, competing demands, and transient healthcare staff. The results demonstrate that barriers to RHD care can be experienced differently by patients based on contextual factors including age, sex, and location. Difficult access to RHD care among teenagers has been previously reported, as they struggle to prioritise care in the context of adolescence and may be lost in the transition to adult services [12-14, 26]. This was reflected in interviewee perspectives that teenagers can be reluctant to seek care and in the nine deaths observed among people aged under 34 in the quantitative analysis. While women experience higher rates of RHD than men and higher RHD mortality overall [5, 20, 21], some interviewees suggested that women were better engaged with RHD services, perhaps due to routine health contacts during pregnancy or stronger health-seeking behaviour, which is possibly reflected in the lower proportion of females in the deceased group (53%) than the prevalent group (67%). Australian RHD guidelines advise that remoteness complicates service access and contributes to poorer outcomes [11], consistent with the quantitative results in which 82% of those who died were from the Kimberley and Pilbara regions. Particularly poor health access among the deceased group from the Pilbara mirrored interviewee comments about the region's restricted availability of echocardiography and specialist services. These findings highlight the need for age, gender, and location-specific strategies to encourage access to RHD care.

Importantly, this study finds that even in the presence of significant barriers, stakeholders perceive that RHD care access can be facilitated by passionate healthcare professionals who understand their local communities. These dedicated staff are a precious resource within the WA system, likely contributing to the characteristics of the prevalent group, of whom 56% had accessed a specialist within the previous two years, despite barriers. Interviewees described being proactive in providing care to RHD patients, taking the initiative to deliver culturally relevant and age-appropriate health messages, and feeling personally responsible for ensuring that patients accessed necessary care. Systemic changes, such as those outlined below, are needed in WA to support and complement these individually motivated actions and reduce RHD mortality.

Health providers who are Aboriginal play a vital role in overcoming care barriers by building therapeutic relationships based on cultural understanding and community knowledge [25, 27]. Additionally, while trusting relationships between non-Aboriginal health providers, patients, and their families take considerable time and effort to develop, these are key facilitators of access to care [28]. Both Aboriginal and non-Aboriginal interviewees emphasised the centrality of mutual respect and strong relationships to engaging with RHD patients, mirroring findings from earlier research with RHD practitioners [17]. Healthcare providers' acknowledgement of the cultural strengths of their communities, holistic approach to health and incorporation of this into healthcare provision is a key protective factor mitigating the impact of RHD in Aboriginal communities [14]. Resourcing, ongoing training and empowerment of the Aboriginal health workforce should therefore be prioritised to ensure sustainable access to culturally safe care for WA RHD patients, as outlined in existing recommendations [12, 17, 29]. For non-Aboriginal healthcare providers, meaningful and context-specific cultural safety training that prompts critical self-reflection is needed, and has effectively shifted health professionals' attitudes and behaviours in the Northern Territory [30].

Exposure to poor RHD outcomes takes a toll on health providers, with feelings of hopelessness, frustration, and burnout resulting from systemic failures [9]. In this study, interviewees across primary and specialist care expressed emotional fatigue, especially regarding the failure of health and other government systems to improve housing and environmental conditions. Increased investment in these upstream causes has well-understood implications for the primordial prevention of RHD and other infectious and chronic conditions [12]. These results demonstrate that this investment is also important to preserve the morale and motivation of healthcare providers who care for RHD patients.

Practical changes to support healthcare staff in WA could include improved interoperability between the WA register and health provider records systems; extension of existing processes for systematic rather than reactive information sharing between providers; and allocation of operational responsibility for ongoing RHD patient follow-up within health services. Similar recommendations were made in the Australian RHD Guidelines and the RHD Endgame Strategy [11, 12]. These changes may alleviate the pressure that individual providers feel to keep track of patient information, especially in the context of a transient workforce and population.

5 Conclusion

This study combines quantitative and qualitative insights to suggest opportunities for preventing RHD-related mortality in WA. Committed WA healthcare providers endeavour to overcome barriers and connect RHD patients with appropriate care. Trusting relationships between patients, families, and providers were identified as essential for this. The stability and motivation of this workforce require support to ensure sustainable access to best-practice RHD care in WA. Necessary support includes resourcing and empowerment of the Aboriginal health workforce, cultural safety training for non-Aboriginal staff, a shift in funding priorities towards primordial prevention, and practical changes to improve data sharing. These findings support recommendations raised in existing research and reports, including the RHD Endgame Strategy and the Australian RHD Guidelines [11, 12, 29]. Evidence generated by the present study highlights the need for national-level recommendations to be implemented to reduce RHD mortality in WA.

Author Contributions

Virginia DeCourcy: conceptualization, data curation, methodology, investigation, formal analysis, project administration, software, writing – original draft, visualization. Daniel Hunt: validation, visualization, writing – review and editing. Ingrid Stacey: conceptualization, formal analysis, methodology, software, validation, visualization, writing – review and editing. Emma Haynes: conceptualization, formal analysis, methodology, validation, writing – review and editing. Beverley Paterson: conceptualization, methodology, supervision, writing – review and editing. Clare Huppatz: writing – review and editing, resources, supervision. Marisa Gilles: conceptualization, funding acquisition, methodology, resources, supervision, validation, writing – review and editing. Judith Katzenellenbogen: conceptualization, funding acquisition, methodology, resources, supervision, validation, writing – review and editing.

Disclosure

V.D.C. was a Master of Philosophy in Applied Epidemiology Scholar with the Australian National University and received a Master of Philosophy in Applied Epidemiology Scholarship funded by the WA Country Health Service. The Australian Bureau of Statistics data extract processing fee was jointly funded by the University of Western Australia and the WA Country Health Service.

Ethics Statement

Ethics approval for this study was granted by both the WA Country Health Service Human Research Ethics Committee (RGS5578) and the WA Aboriginal Health Ethics Committee (HREC717) in August 2022.

Conflicts of Interest

The authors declare no conflicts of interest.