Geographical analysis of evaluated chronic disease programs for Aboriginal and Torres Strait Islander people in the Australian primary health care setting: a systematic scoping review

It is well established that Indigenous people experience poorer health outcomes than non-Indigenous people globally [1]. Australian Aboriginal and Torres Strait Islander people, like other Indigenous populations in Canada, New Zealand and the United States, endure ongoing health inequities such as a high burden of chronic disease and difficulty accessing culturally safe health care [2, 3]. Chronic diseases with strong environmental and behavioural etiology, such as cardiovascular disease and Type Two Diabetes Mellitus (T2DM), contribute to approximately 80% of the mortality gap between Australian Aboriginal and non-Aboriginal people between 35 and 74 years of age [4]. Aboriginal people residing in more geographically remote areas experience further disadvantage and a higher burden of chronic disease [5]. For example, the proportion of Aboriginal people with Diabetes Mellitus in Very Remote areas of Australia is approximately twice that of Aboriginal people in Major Cities [6]. The lack of affordable fresh fruit and vegetables in these areas is one contributing factor [7].

Targeted chronic disease prevention and management programs delivered in the primary health care setting are imperative to alleviating the burden of disease and improving health outcomes for Indigenous people [3, 8]. In Australia, little progress has been made in improving health outcomes, the distribution of chronic disease, and risk factors for developing disease for Aboriginal people [2, 9]. This is despite numerous funded Aboriginal chronic disease programs implemented at a national level (e.g., Aboriginal Chronic Disease Package, 2008) and initiatives under the ‘Closing the Gap’ policy [2, 9]. The ineffectiveness of health programs has been attributed to multiple factors, including short government funding cycles, a lack of community ownership and consultation, and a ‘one size fits all’ approach to program design and implementation [10, 11]. Furthermore, only a small proportion of Aboriginal health programs have been evaluated (8%), with only 6% of program evaluations applying rigorous evaluation methodologies to measure program effectiveness [12, 13]. The paucity of Aboriginal health program evaluations has resulted in little opportunity to improve or modify existing programs in response to program outcomes, contributing to the cycle of program ineffectiveness.

The need for Aboriginal community-driven programs and governance of primary health care services, as supported by the international right to self-determination for Indigenous people, is becoming increasingly recognised as a key strategy to alleviating the burden of chronic disease [14‐16]. Strong evidence supports the role of Aboriginal Community-Controlled Health Organisations (ACCHOs) and other Aboriginal organisations in improving the accessibility, appropriateness and effectiveness of primary health care services through the provision of culturally appropriate care which respects the cultural values and beliefs of Aboriginal people [8]. Therefore, the involvement of ACCHOs and other Aboriginal organisations in the design and implementation of chronic disease programs is imperative [15, 17‐19]. Moreover, a community-based approach to program design, implementation, evaluation, sustainability and transferability acknowledges the diversity of Aboriginal culture, language and customs [10]. This ensures that chronic disease programs are tailored to local needs and evaluated in partnership with community, recognises the strengths and resilience of Aboriginal people, and empowers Aboriginal communities to promote their own health and wellbeing [20].

Although there has been a rhetorical shift from government initiated health programs to community-developed health programs for Aboriginal people in Australia [21], it is not known whether the distribution of chronic disease programs has been proportionate to the population distribution of Aboriginal people, or to the burden of chronic disease. Furthermore, it is not known geographically where evaluated chronic disease programs for Aboriginal people in the primary health care setting have been implemented. Therefore, the purpose of this scoping review was to identify where evaluated chronic disease programs have been implemented in the primary health care setting [22]. Specifically, this review sought to determine whether this distribution was proportionate to the Aboriginal population distribution, and burden of disease across all geographical areas of Australia and by doing so, highlight geographical gaps in the literature to identify priority areas for the implementation of chronic disease programs. Secondary objectives included scoping for evidence of partnerships with ACCHOs and other Aboriginal organisations, in addition to the use of ethical guidelines or protocols in the reporting of programs.

This study provides a systematic scoping review geographically examining the distribution of evaluated chronic disease prevention and management programs implemented for Australian Aboriginal people in the primary health care setting which includes community-health settings, general practice clinics and ACCHOs [22]. This review was undertaken in accordance with the methodology for conducting scoping reviews as outlined in the Joanna Briggs Institute Reviewers’ Manual 2017: Methodology for JBI Scoping Reviews [23]. Search terms were designed in a PCC (Population, Concept, Context) format by the research team and in collaboration with a health librarian. The premise and methods for this review have been published elsewhere in greater detail [22]. The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines were adhered to in the reporting of this review (Additional file 1).

Database searches yielded 14,366 citations. An additional 241 citations were retrieved from a search of the grey literature and targeted organisation websites. A total of 6894 title and abstracts were screened, with duplicates removed. The full texts of 314 citations were screened for relevance to the review criteria, identifying 74 pertinent records evaluating 50 chronic disease prevention and management programs (Fig. 1 – PRISMA Flow Diagram). One of these records included reference to three evaluated programs [28].

Reasons for excluding records were provided (Additional file 3). The most frequent reason provided for exclusion was that the record was ‘not a program evaluation’ (n = 52), followed by ‘Sub-studies met inclusion criteria but already included in search, or sub-studies did not meet inclusion criteria’ (n = 50) and ‘not a primary health care delivered program’ (n = 30). Excluded records included 20 records which focused on evaluating national screening and vaccination programs. These were excluded as findings were based on national or state-wide aggregate data which would have been difficult to include in the geographical analysis.

This review highlights the paucity of Aboriginal chronic disease program evaluations conducted in the primary health care setting across all geographical regions of Australia. Previous studies have acknowledged that only a small proportion of Aboriginal health programs have been subject to an evaluation process [12, 13]. Therefore, the included programs in this review are not representative of all chronic disease programs implemented for Aboriginal people across Australia. Of those included, the majority targeted highly prevalent chronic diseases, such as cardiovascular disease and T2DM, or risk factors for developing chronic disease, such as smoking and physical inactivity [2]. Due to the heterogeneity of programs across all geographical regions and small sample size, the review was unable to ascertain whether the spread of programs was proportionate to the distribution of chronic disease across all Remoteness Areas of Australia. For example, it was difficult to conclude whether a greater focus on the management of T2DM for Aboriginal people residing in Very Remote areas is required, where the prevalence of T2DM is approximately twice of Aboriginal people residing in Major Cities [6]. However, the small proportion of evaluated social and emotional wellbeing (SEWB) programs (e.g., mental health programs) was noted across all geographical regions, supporting the need for tailored early intervention and screening SEWB programs for Aboriginal people [19]. Internationally, tailored programs for mental health prevention have been deemed particularly important for Indigenous people, particularly those including an exploration of cultural identity [102, 103].

Overall, Major Cities and Very Remote areas of Australia displayed similar levels of chronic disease program implementation activity, with less activity noted for Inner and Outer Regional (IOR) areas and Remote areas of Australia. A greater focus on chronic disease programs for Very Remote Aboriginal people when compared to IOR or Remote Aboriginal people could be informed by national data which indicates that the burden of chronic disease in Aboriginal people increases with Remoteness [6]. However, less Aboriginal people reside in Very Remote areas when compared to IOR areas (11.9% compared to 23.7 and 20.3% respectively), suggesting there is a need for the evaluation of chronic disease programs for Aboriginal people residing in IOR areas [101]. Across all geographical areas in Australia, it is anticipated that the demand for chronic disease prevention programs will increase over time, due to a higher Aboriginal population growth rate when compared to non-Aboriginal populations as indicated by 2017 national data (2.26 babies per Aboriginal woman compared to 1.75 babies per non-Aboriginal woman) [104, 105]. The demand for chronic disease programs may also increase for Indigenous people in other countries (e.g., Canada) experiencing similar population growth (2.2 babies per Aboriginal woman compared to 1.6 babies per non-Aboriginal woman in Canada) [106].

When considering evaluation activity, higher levels of evaluation were noted for Major Cities (71.6%) when compared to Very Remote areas (1.2%). This is despite the fact that national data indicates that less Aboriginal people reside in Major Cities compared to the total Australian population (37% compared to 73% respectively) [101]. Further to this, the proportion of Aboriginal people is higher in all other Remoteness Areas of Australia, relative to the total Australian population [101]. This finding suggests there is a need for more Aboriginal community-led research as supported by the broader literature [15, 19, 20]. However, caution should be applied in interpreting these findings as first author affiliation was used as a proxy for the location of program evaluation for 15 of the 40 programs included in the geographical analysis. The rationale for this assumption was that first authorship implied a lead role in the evaluation.

When examining first author affiliation for all included citations (n = 74), 74% (n = 55) of citations were associated with a university or research institution, with only 9.5% (n = 7) citations associated with an ACCHO or other Aboriginal organisation. A previous review of Aboriginal health programs in Australia also found that the majority of program evaluations (72%) were led by a research institution or university rather than an Aboriginal community organisation [107]. However, first author affiliation with a research institution or university does not necessarily mean that the evaluation did not have significant Aboriginal community input; particularly as 90% (n = 45) of included programs provided details of collaborating with an ACCHO or other Aboriginal organisation in the development or evaluation of the program. Strong support for the appropriateness of ACCHOs as a collaborating organisation for activities involving Aboriginal people is found in the literature [108]. Generally, ACCHOs are geographically accessible to Aboriginal people and valued for the provision of culturally safe primary health care [8, 109, 110].

Although the majority of programs partnered with an ACCHO or Aboriginal organisation, it is difficult to ascertain for all programs, the degree of community ownership and involvement in the evaluation process. This includes steps taken by evaluators to ensure the evaluation process was ethically and culturally appropriate for Aboriginal people [20]. As reporting the formal ethical review of a research project is a standard requirement for publication in a peer-reviewed journal, both nationally and internationally, it is not surprising that the majority of citations (70%, n = 52) provided a statement of formal review by an appointed committee (e.g. HREC). However, only 31% of the included citations (n = 23) provided some evidence of actions taken to adhere to Aboriginal community-based ethical protocols, or engagement with an Aboriginal advisory group in the design of the program or conduct of the evaluation. Indeed, a statement of formal ethical review does not provide sufficient detail describing how Aboriginal people were consulted and included in the evaluation process. Other Aboriginal program evaluation frameworks and models of Aboriginal health research should also be consulted, which are valuable in informing approaches to conducting program evaluations in partnership with Aboriginal people [20, 25, 111, 112]. Program evaluations of Aboriginal programs excluding partnerships, often lack relevance and integrity, and fail to translate to outcomes for Aboriginal people [12, 113].

A greater focus on the implementation and evaluation of chronic disease prevention and management programs for Aboriginal people in Australia is required, particularly for Aboriginal people residing in Inner and Outer Regional Areas of Australia. There is also a need to conduct evaluations of Social and Emotional Wellbeing (SEWB) programs across all geographical regions. This review highlights the need for more ethically rigorous approaches to Aboriginal health program evaluations which engage Aboriginal people in all stages of program design, implementation, evaluation and sustainability.