Successful chronic disease care for Aboriginal Australians requires cultural competence
Dr Phyllis Lau, Department of General Practice, The University of Melbourne, 200 Berkeley St, Carlton, VIC 3053; e-mail: email@example.com
Objective: To review the literature to determine the attributes of culturally appropriate healthcare to inform the design of chronic disease management (CDM) models for Aboriginal patients in urban general practice.
Methods: A comprehensive conceptual framework, drawing on the Access to Care, Pathway to Care, Chronic Care, Level of Connectedness, and Cultural Security, Cultural Competency and Cultural Respect models, was developed to define the search strategy, inclusion criteria and appraisal methods for the literature review. Selected papers were reviewed in detail if they examined a chronic disease intervention for an Aboriginal population and reported on its evaluation, impacts or outcomes.
Results: In the 173 papers examined, only 11 programs met the inclusion criteria. All were programs conducted in rural and remote Aboriginal community-controlled health services. Successful chronic disease care and interventions require adequate Aboriginal community engagement, utilising local knowledge, strong leadership, shared responsibilities, sustainable resources and integrated data and systems. These success factors fitted within the conceptual framework developed.
Conclusions: Research and development of culturally appropriate CDM models concurrently in both urban and rural settings will enable more rigorous evaluation, leading to stronger evidence for best practice. A partnership of mainstream and Aboriginal-controlled health services is essential to successfully ‘close the gap’.
Implications: Findings will inform and guide the development, implementation and evaluation of culturally appropriate CDM in mainstream general practice and primary care.
Aboriginal and Torres Strait Islander people (henceforth referred to as Aboriginal people) have significantly higher morbidity and lower life expectancy than non-Aboriginal Australians. Recent estimates of Aboriginal life expectancy are 11.5 years (males) and 9.7 years (females) less than non-Aboriginal Australians.1 Their poorer health has been attributed to multiple factors, including high levels of social, educational and economic disadvantage,2 possible genetic predisposition for diabetes3 and exposure to infectious diseases, alcohol, and a high-fat and high-sugar Western diet.4 A wide variety of clinical and non-clinical solutions, and a long-term commitment by governments are necessary to resolve these issues.5
Following the 2005 Social Justice Report that highlighted Aboriginal health inequality and the need for Aboriginal and non-Aboriginal partnership,6 players on all sides of politics, together with Aboriginal and non-Aboriginal health peak bodies, signed a Statement of Intent to close the life expectancy gap by 2030 and provide the necessary primary healthcare to meet the goal by 2018.7
Diabetes is the sixth major cause of death in Australia, costing more than $1 billion each year in direct healthcare costs.8,9 Diabetes was reported by 6% of Aboriginal Australians in 2004/05. After adjusting for age, they were 3–4 times more likely than other Australians to report having diabetes or high sugar levels.10
Culture and identity are central to Aboriginal perceptions of health and ill health, which relate to “not just the physical wellbeing of the individual, but the social, emotional and cultural well-being of the community”. This is a ‘whole-of-life’ view and includes the cyclical concept of life-death-life.11 While Aboriginal perceptions of identity may vary between urban and remote contexts, and between different communities, often as a result of the different extent of dispossession, the core values and principles remain constant.12 Adding to the complexity of healthcare provision at every level is the challenge of more widely dispersed and therefore ‘hidden’ urban Aboriginal populations further complicated by the reluctance of some Aboriginal people to identify as Aboriginal. Service providers and researchers must respect and respond to Aboriginal values and principles, as well as acknowledge and understand the enormous impact of colonisation and its aftermath on the identity, culture and health of Aboriginal peoples.
Since the early 1970s, Aboriginal people have fought for and won support from governments for Aboriginal Community Controlled Health Services (ACCHSs), including Aboriginal Medical Services (AMSs) which are community owned and controlled and play a central role in providing culturally appropriate holistic care for Aboriginal people across Australia. They also prioritise prevention and public health services (housing, water supply and environmental services), and often advocate for and directly support action to address education,13 economic issues and improved capability and capacity of Aboriginal health professionals.14
Aboriginal people comprise 2.5% of the Australian population, and only 26% live in remote/very remote areas.15 Evidence suggests that Aboriginal Australians use a variety of Aboriginal and non-Aboriginal or mainstream primary care services. In 2006/07, patients identified themselves as Aboriginal at 0.9% of general practice encounters across Australia,16 and even though this most likely represents significant under-reporting, it still equates to approximately one million encounters a year. A national survey suggests that when Aboriginal people have a health problem, they usually go to a doctor/GP (60%), an AMS (30%) or a hospital (7%); and 91% usually go to the same doctor, health service or AMS.10 The same survey reports that in Victoria 75% of Aboriginal people usually go to a doctor/GP, 19% to an AMS, 3% to a hospital and 92% usually go to the same doctor, health service or AMS. Although there are debates over the accuracy of these figures, the immediate response of health providers and policy makers should be to ensure that all sectors of service provision are able to respond appropriately to the needs of Aboriginal Australians. There is a need for Aboriginal voice and determination to be heard above all such debates when it comes to designing optimal service provision for Aboriginal people.
Racist stereotyping and misleading assumptions have led to suboptimal treatment or service provision.17 For example, up to 16% Aboriginal Australians in a Queensland survey reported that they were treated badly in mainstream services because they were Aboriginal.18 Lack of information, limited literacy and poor understanding of health information frequently led to non-compliance with instructions and inappropriate sharing of medicines.19 There is sadly a significant lack of culturally appropriate palliative care services,20,21 rehabilitation services22 or medicines information23 for Aboriginal Australians. Strategies to address health disparities must pay attention to the interstices between the person and the wider social and historical contexts; to contemporary realities of Aboriginal health and wellbeing; to individual and community-based effects of health disparities; and to the direct and indirect sources of those disparities.24 Aboriginal Australians – remote, rural or urban – need to be adequately served by both Aboriginal and mainstream general practices, but the latter must be culturally aware and competent to optimally manage chronic disease among Aboriginal people.17,25
The Cultural Respect Framework for Aboriginal and Torres Strait Islander Health (2004–2009) was developed to influence the healthcare system to adjust policies and practices to be culturally respectful and thereby contribute to improved healthcare and outcomes for Aboriginal Australians.26 It is in this context and in the spirit of ‘closing the gap’ through strengthening Aboriginal and non-Aboriginal partnerships that we are undertaking a study to examine ways to improve the management of Aboriginal Australians with diabetes and chronic disease in urban mainstream primary health services. This paper describes the literature review component of the study, the chronic disease interventions identified in the literature and our assessment of the determinants of success and failure in these interventions.
A conceptual framework for chronic disease management (CDM) was developed, based on an initial broad review of the literature combined with the knowledge and relevant experience of the multidisciplinary research team. Keywords were organised around six broad concepts relevant to CDM for Aboriginal people – population (Aboriginal, Aboriginal and Torres Strait Islander, Indigenous, Koori, Native, First Nation); culture (cultural appropriateness, cultural correctness, culturally appropriate, culturally correct, culture, customs, traditions, values, way of life); socioeconomic; disease (chronic disease, diabetes, diabetes mellitus, type 2 diabetes, non-insulin dependent diabetes, NIDDM, adult-onset diabetes); care process (care plan, clinical intervention, intervention, management, self-care, self-management); and health service (Aboriginal community-controlled, health centre, health service, acute care, case management, co-ordinated care, community health centre, community health service, emergency care, general practice, health services, inter-disciplinary, multi-disciplinary, primary care, primary health care, super-clinic, team care, urban general practice). As the literature was examined and appraised, the conceptual framework was further modified and enhanced.
The literature search covered papers, reports, guidelines and communications published by Australian government and non-government agencies on general and Aboriginal health services published in English in the past 10 years (01 Jan 1998 to present), as well as publications from the following search engines/databases: Web of Science (includes Science Citation Expanded®, Social Sciences Citation Index® and Arts & Humanities Citation Index™); PUBMED; MEDLINE; Cochrane Library; CINAHL PLUS; PsychINFO; Informit (includes books, media and index databases, e.g. AUSThealth, ATSIhealth, Health & Society); LexisNexis® and Academicfactiva®.
Papers were selected for review if they examined a chronic disease intervention for an Aboriginal population and reported on its evaluation, impacts or outcomes. All abstracts retrieved were reviewed by two researchers for relevance to the study (n=173). Only 17 papers, describing 11 interventions, were identified that specifically described a chronic disease intervention and reported on the evaluation of the intervention, its impacts or outcomes. These papers were categorised according to type of intervention, importance and relevance to the research question, and the dimensions of the conceptual framework. The quality of the scientific content, evaluation methodology, innovativeness and relevance to cultural appropriateness in general practice was assessed using standard techniques of critical appraisal, guided by the conceptual framework. A report card was developed specifically to assess the 17 papers. It combines the PICO (Population, Intervention, Comparator and Outcomes) approach, dimensions from the Chronic Care Model and Access to Care model, as well as questions specifically intended to ensure all aspects of an intervention were assessed. Each member of the research team independently assessed a sample of five papers using this report card. A member of the research team (MB), a Koori woman, independently assessed all 17 papers for the level of description, appropriateness and adequacy of cultural engagement, based on the cultural respect components of the conceptual framework developed. Team discussions were held to achieve final consensus on the findings of the detailed reviews of the 17 papers (11 interventions).
The composite conceptual framework developed for this study incorporated existing models for Pathway to Care, Access to Care, Chronic Care, Cultural Security; Cultural Competency; Cultural Respect; and Level of Connectedness Model.
Pathway to Care describes the patient's journey through the health system – beginning with a perceived need for care, identification of and access to a health service, consulting a primary care clinician, receiving an appropriate assessment and diagnosis, being provided with appropriate management and care plans, and monitored and supported to adhere to a care plan and achieve better health outcomes.27 The physical, economic and sociocultural aspects of Access to Care include availability (patients’ knowledge about the services and patients’ confidence in being able to receive the medical care they require), accessibility (relationship between location of services and the patients (distance, transport, cost), affordability (relationship between costs of services and extent to which cost is seen as a barrier to service use), accommodation (relationship between extent to which service delivery arrangements are able to accommodate patients’ needs and the extent to which doctors’ attitudes are seen to be accommodating of those needs) and acceptability (relationship between perceived need for improvement in the service delivery arrangements and patients’ satisfaction with the arrangements).28
The Chronic Care Model conceptualised chronic care in terms of six essential elements (patient self-management, decision support, healthcare organisation, delivery system design, clinical information systems and community resources and policy) at four levels: community, system, patient and provider.29–32 In the composite conceptual framework, we incorporated these elements and divided the care pathway into pre-, during and post-encounter with the clinician.
Cultural Security33 links understandings and actions, moving beyond cultural awareness and cultural safety.34 To illustrate, cultural awareness is recognising and acknowledging cultural difference; cultural safety involves working with individuals or communities to develop and implement culturally appropriate practices; cultural security involves employing Aboriginal staff and having policies and procedures that are automatically applied whenever an Aboriginal person seeks care.35Cultural Competency in a health system embraces cultural diversity, achieves the best, most appropriate care and services, enables self-determination, ensures a commitment to reciprocity for diverse communities, and holds governments, health organisations and managers accountable for meeting the needs of all members of the communities they serve.36 In this context, Aboriginal people must be the dominant partner in the care process37 and in determining healthcare and research priorities.38,39Cultural Respect is the recognition, protection and continued advancement of the inherent rights, cultures and traditions of Aboriginal people, and includes cultural competence and cultural security, with a focus on equity of health outcomes.26
This systematic approach to the care of the Aboriginal person with chronic illness in urban general practice is underpinned by the Level of Connectedness Model that describes the Aboriginal perception of vulnerability to diabetes and other chronic illnesses. This needs to be understood in terms of their connectedness at three social levels – family, community and wider society. The degree of connection at each level becomes the protective or risk factors that determine an Aboriginal person's vulnerability.40 The key dimensions of the conceptual framework are illustrated in the final template that we used to extract data from the papers (see Table 2).
Table 2. Indigenous chronic disease interventions analysed according to key dimensions of the conceptual framework.
|Pathway: before encounter – decision to seek care; ability to identify and reach a medical facility|
|Pathway: during encounter – appropriate assessment, diagnosis and management; development of care plans|
|Pathway: after encounter – follow-up; adherence to care plan|
Table 1 summarises the rationale for the 11 interventions described in these 17 papers, together with their target populations and outcomes. The majority of the remaining papers were utilised to inform a broader understanding of CDM in Aboriginal populations.
Categorisation of chronic disease interventions in Aboriginal populations.
There were 10 evaluated interventions implemented in remote communities in Australia and one in rural Canada. None were in an urban setting. The types of interventions were: six community-focused screening, treatment and research programs; four organisational and health services programs; and one patient and provider interaction intervention.
‘Success’ or ‘failure’ of different aspects of each intervention was defined only by that which was reported in the papers, as long as it was reasonable and some attempt was made to measure it within a broad definition. Strict definitions were not possible due to the lack of uniformity in the evaluation methods. Evaluations of the interventions used a range of subjective and objective measures for process, impact and outcome. No contemporary comparison group was used; one intervention used a historical comparison.41 There was also little consistency in instruments and measures used. All reported some initial success but few reported sustained outcomes or behaviour changes. Positive impacts reported included increased community engagement and strengthened networks.41–49 Some specific screening and treatment programs targeted at diabetes, cardiovascular disease and renal disease have been incorporated into normal practice or existing services in Australia and overseas.50 An organisational and health services improvement program reported some initial success with preventive services and compliance with diabetes management protocols, but not sustained changes.51,52
The interventions according to the conceptual framework
The 11 interventions were examined to assess the extent to which they addressed the key dimensions of the composite conceptual framework before, during and after the encounter with the clinician (see Table 2). A scoring, not weighting, system was used. The number in each cell refers to the number of interventions that addressed the particular dimension of the Chronic Care Model and Access to Care Model, given the stage in the Care Pathway. Generally more emphasis was placed on healthcare organisation, delivery system design and provider education and support. Community engagement and patient education were next. Least emphasis was given to clinical information systems.
Before the encounter, activities mainly focused on the availability, accessibility and affordability of the intervention. Interventions tended to engage more with provider education and support, healthcare organisation and community organisations. During the encounter, there was increasing focus on self-management by patients and families, accommodation by providers and delivery system design. After the encounter, the pattern is similar to pre-encounter, with less focus on the community organisations.
Determinants of success and failure
Informed by the broader literature, the 11 interventions were further analysed to identify determinants of success or failure (see Table 3).
Success factors of and barriers to effective CDM in Indigenous populations.
Each member of the Research team then independently assessed the interventions and categorised their success determinants according to the four NHMRC principles of cultural competence.36 Any disagreements were discussed within the team until consensus was reached. The four principles are:
- 1Engaging patients and communities and sustaining reciprocal relationships.
- 2Using leadership and accountability for sustained change.
- 3Building on strengths – know the community, know what works.
- 4Sharing responsibility – creating partnerships and sustainability.Based on the literature review, we added a fifth principle:
- 5Integrating data and systems.
1. Engagement of patients and communities
Although community engagement and ownership were mentioned as success factors across almost all the studies, 13 of the 17 papers had little or no description of the actual engagement process. This made assessment of whether engagements were appropriate and adequate challenging. Nevertheless, the most successful programs evolved from a need expressed by the community, who then invited researchers and academics to develop and implement programs on their behalf. Success was limited when relationships were not reciprocated. Effective communication between participating organisations and project workers at all levels, including the funders, was critical.43–45,53
A participatory action research approach with constant monitoring of process and impact is important for adapting program structure. At the individual level, understanding the patients’ health beliefs54 is an important element of engagement.
2. Aboriginal leadership and accountability for sustained change
The engagement of the community council, community store management and key individuals as project champions determined the success and sustainability of a community nutrition and lifestyle program.41 Appropriately skilled local and/or Aboriginal health workers can provide important leadership on the ground and are important to the success of interventions. For example, programs run by local health workers, following algorithms for testing and treatment of kidney disease, with backup from outreach nurse co-ordinators were more likely to succeed.55 In a remote community, screening with retinal cameras for diabetic retinopathy was performed locally by Aboriginal health workers and nurses without formal certification, and was successfully sustained with regional support.49
Lack of health workers, high staff turnover and absenteeism were major impediments to productivity, positive clinical outcomes and sustaining health programs.56 A lack of clarity between the roles of project staff, for example, the community support worker and the clinic staff, was problematic.53
3. Building on strengths
Critical elements of program and intervention success included knowledge of the Aboriginal community and the capacity to build on local knowledge about what works and what is likely to be acceptable to patients.52,57 Previous involvement with other, often similar, projects meant that the communities, patients or leaders were more ready for the current program of lifestyle or disease management changes.53 Another important success factor was having key people in the bureaucracy stay in positions and remain committed to the project.
4. A shared responsibility and focus on sustainability
Establishing health boards, drawing on different representative and administrative structures in each region has been successful, with many boards taking over health centres and developing community programs in public health, prevention and health promotion.47,48,53 Shared responsibility is manifested when project workers are committed to community engagement, partnerships and development, and when community leaders support and allocate resources to long-term interventions, for example through actively promoting physical activity, nutritious diets and school attendance.41,58
Factors that contributed to sustainability of the Sharing Health Care Initiative (SHCI) included an implementation strategy that adapted to local conditions; community engagement; national policy coinciding with local readiness for the project; effective communication between participating organisations; project champions (key individuals); effective use of data; and continuing funding.53 However, some of these factors can also potentially inhibit sustainability. For example, key individuals can have a negative effect through idiosyncratic behaviours or when excessive workload prevents them from focusing sufficiently on the project.
The Audit for Best Practice in Chronic Disease (ABCD) Project used the Chronic Care Model as a framework, but focused on prevention activities. Differences between the services in readiness to adopt the complex intervention and record-keeping were reflected in the sustainability of the ABCD intervention.46,47 Factors necessary for sustainability included training and engaging service staff in continuous quality improvement (CQI) activities, greater use of nurse-practitioners, improving organisational systems, addressing work practices, setting clear priorities for co-ordinated care plans, and addressing reluctance of patients to accept offered preventive services when presenting for acute non-scheduled services.
5. Data and information systems
A common theme across all the projects evaluated is the need for good data and information management to describe the population and monitor the impacts of the intervention. The planning and development of rational health policy and needs-based health services require local community-based health profiles,55 as well as accurate and comprehensive data on health service utilisation, morbidity and mortality patterns.59 Aboriginal identification is a big challenge within the Australian health and administrative systems,60–62 suggesting that under-reporting and under-estimations are the norm in existing data sets. Existing data is still insufficiently granular to be useful for clinicians and policy makers.63 The statistical, practical and ethical obstacles to surveying a relatively small population must also be addressed.
The persistent gap in life expectancy and health outcomes between Australia's Aboriginal and non-Aboriginal populations demands urgent attention from Australian federal, state and territory governments, the health system, healthcare providers and researchers. The high prevalence of diabetes and chronic disease in Aboriginal communities, and the demographic characteristics and health utilisation statistics for Aboriginal people support the case for mainstream urban services to develop better models of culturally appropriate CDM to complement the work of existing ACCHSs. The need to share resources and the importance of understanding the history and cultural needs of local Aboriginal communities provide compelling reasons for an Aboriginal-mainstream partnership approach to improving Aboriginal health, healthcare and research.
This literature review was conducted to identify success factors in chronic disease interventions for Aboriginal people with diabetes and other chronic conditions. Interventions that were most successful were characterised by a high level of Aboriginal community engagement and effective communication at all levels. Successful programs were able to build on local knowledge about what works and what was likely to be acceptable to patients. Participatory action research ensured that projects had the flexibility needed to adapt to local needs. Some programs benefited from the support of key individuals who were able to champion the intervention. While ownership of health programs by Aboriginal community and organisations is required to achieve sustainable improvements in health behaviours in rural and remote Aboriginal communities, the challenge is to ensure such ownership for urban Aboriginal people living in more diverse areas across large metropolitan centres.
Good data and information management systems, along with culturally appropriate identification of Aboriginality, are essential to collect accurate and comprehensive data on health service utilisation, morbidity and mortality patterns, and monitor the impacts of health interventions and support the local leadership and communities. Programs need to have sufficient resources and effective financial and project management. Inadequate evaluation strategies limited the quality of information available to inform future interventions.
The literature review was limited by the lack of relevant publications, particularly of rigorously evaluated health programs in Aboriginal health, and more specifically the lack of urban-based interventions. Evaluation difficulties are unavoidable in rural and remote communities due to limitations with access, poor infrastructure and small population numbers. Compounding the challenge is the lack of uniformity in evaluation methods and measures of impacts and outcomes. Much is known about availability, access and process, but little is known about effectiveness and patient outcomes of these programs. Although community engagement was a success factor in almost all interventions assessed, there is a lack of detailed descriptions of community engagement, community acceptance, cultural appropriateness or any subsequent impact on intervention outcomes. In-depth quantitative and qualitative evaluations are required to strengthen the evidence for a causal relationship between cultural appropriateness and success of an intervention.
Further research and development of culturally appropriate models of CDM for Aboriginal people, especially in urban settings, will provide stronger evidence for best practice in CDM in both urban and rural settings. The three tiers of the Australian Health Performance Framework64– health status and outcomes, Determinants of Health, and Health System Performance – is the logical starting point to guide any assessment of the effectiveness of interventions in Aboriginal health using multi-centre and multi-setting approaches. Standardising the methodologies, data and information models and terminologies within this national framework, and tailoring its focus to primary healthcare, will address many of the statistical, logistic and ethical issues currently associated with research involving small rural and remote communities.
Despite the lack of research on urban-based interventions, we believe the key success factors identified in this review are relevant to urban Indigenous populations.
Successful chronic disease care and interventions require adequate Aboriginal community engagement, utilising local knowledge, strong leadership, shared responsibilities, sustainable resources, and integrated data and systems. Improving the strength of Aboriginal health research and its translation into clinical practice and policy requires a co-ordinated approach, with common methods, measures and data sets, so that well-planned multi-setting research can be carried out across Australia. A common conceptual framework and terminology is required to facilitate cost-effective research into the health of Aboriginal peoples, regardless of whether they live in urban, rural or remote Australia.
Dr Penny Johnson for initial support of the literature review; Mr Steve Kelly for relevant cultural perspectives; the Victorian Aboriginal Community Controlled Health Organisation for expert advice; The University of Melbourne Brownless Medical Library staff for support with literature searches; The Royal Australian College of General Practitioners Research Foundation for part funding; and the National Health and Medical Research Council for funding the project. We also thank the anonymous reviewers for their constructive advice.