Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

Aboriginal and Torres Strait Islander people have worse health outcomes than other members of the Australian population, in common with the Indigenous populations of other developed countries such as New Zealand, Canada and the US [1–5]. These disparities are reflected in indicators that include lower life expectancy at birth, higher rates of death and illness, and higher rates of injury and disability among Aboriginal and Torres Strait Islander people than among other Australians [6, 7]. Within this context of disadvantage, chronic illness is the major contributor to the current health disparities [6]. As an example, deaths from cardiovascular disease are three times higher for Indigenous Australians than they are for non-Indigenous Australians, with the disparity being most marked in younger age groups [8].

Across the country, diabetes is having a devastating impact on Indigenous communities with rates of diabetes three times higher among Indigenous people than among non-Indigenous people [9]. Indigenous Australians also have an earlier age of onset [6] and this places an additional financial burden on Indigenous Australians affected by this increasingly prevalent chronic condition [10, 11].

Research shows that there is a link between poverty and obesity, a contributing factor to diabetes [12]. Moreover, diabetes increases one’s chances of having heart disease by as much as four to six times, while end stage renal disease, a common consequence of poorly managed diabetes, increases one’s risk of heart disease by twenty times [13]. With increasing rates of kidney disease in some Indigenous communities, we can expect to see this adding to the increasing burden of chronic illness among Aboriginal and Torres Strait Islander people [14].

Systemic problems related to racism and marginalisation have also had a negative impact on Indigenous health. Several studies have shown that Aboriginal and Torres Strait Islander patients continue to experience high rates of discrimination within the health sector [15, 16] despite efforts to eliminate racism and improve access to health services [17].

These systemic problems are compounded by poor communication within the health system. The problems associated with poor communication [18, 19] are exacerbated for Aboriginal and Torres Strait Islander patients, largely as a result of the inability of health care workers to understand and acknowledge the cultural background of Aboriginal and Torres Strait Islander people. Moreover, a history of poor access to health services as well as socio-economic disadvantage are likely to contribute to diminished levels of communication between health care workers and Aboriginal and Torres Strait Islander patients [20].

The current scarcity of Indigenous health workers adds a further layer of complexity to the challenges faced by Aboriginal and Torres Strait Islander people. Despite the evidence that health care workers from the same ethnic background as patients leads to improved health outcomes [21–24], little progress has been made in rectifying the current shortage of Indigenous health workers.

Indigenous patients have identified the absence of Indigenous workers as a significant barrier to the availability of health care [25]. While greater numbers of Indigenous people need to be recruited and retained, enhanced training programs in cultural awareness for non-Aboriginal health workers are also needed.

With rising rates of chronic illness and an ageing population, health systems will be confronted with mounting challenges and increasing demands on available services. These challenges may be even greater for communities confronted with barriers such as poor access to services[8]. This study provides insights from Aboriginal and Torres Strait Islander people affected by chronic illness and identifies strategies to confront the complexities associated with the growing epidemic of chronic illness within Indigenous communities in Australia.

This study was conducted in partnership with two Aboriginal Medical Services (AMSs) that assisted with the recruitment of participants against our study criteria, obtaining their consent to be interviewed by a member of the research team. All participants were provided with written and oral explanations about the purpose of the research and their role in it. A partnership based on respect and equity was negotiated between the communities and the research workers [26], seeking to avoid the errors of non-partnered research with Indigenous peoples [27].

Ethical approval to conduct the study was granted by the Aboriginal Health and Medical Research Council of New South Wales, the Australian National University Human Research Ethics Committee, the ACT Health Human Research Ethics Committee, the University of Sydney Human Research Ethics Committee, and Sydney West Area Health Service Human Research Ethics Committee.

The data collection and analysis were carried out by a group of six researchers with backgrounds in health and social sciences who were involved in all stages of the research and also wrote this manuscript.

This paper reports key findings from the analysis of nineteen in-depth interviews with Aboriginal and Torres Strait Islander participants who had chronic illness and/or cared for a family member with chronic illness. Participants were recruited as part of the Serious and Continuing Illness Policy and Practice Study (SCIPPS), a large qualitative research project which investigated the experiences of people living with at least one of three index conditions, diabetes (n = 17), chronic obstructive pulmonary disease (n = 3) or chronic heart failure (n = 11).

Participants ranged in age from 34 to 70 and were recruited by purposeful sampling through referrals from AMSs and general practices in western Sydney, New South Wales, and the Australian Capital Territory and included people with one or more of the three index conditions. The wide age range was chosen because of the early onset of chronic illness and shorter life expectancy of Indigenous Australians [28].

Semi-structured in-depth interviews were conducted with participants, with interviews lasting from 45 to 90 minutes. Participants were asked to describe their experiences of living with chronic illness, and several questions focused on their experiences and interactions with health care services and workers.

We asked questions such as, "Can you tell me what it has been like for you living with diabetes/CHF/COPD?”, "How have your experiences with health professionals affected you?" and, "What could health professionals do that would most improve your care?" All participants also completed a brief demographic survey and provided information about their health conditions and health care encounters. The research team judged that sufficient data had been gathered when interviews were no longer providing new insights or ideas central to the experience of having DM/COPD/CHF, indicating data saturation.

All interviews were electronically recorded and transcribed verbatim. Transcripts and field notes were imported into QSR NVivo8 to assist data management and analysis [29]. The research team iteratively established a coding scheme based on analysis of the transcripts and this scheme was used to code all transcripts (each transcript was coded by four members of the research team to ensure rigour).

We used content analysis to identify matters commonly raised by participants [30] that related to the research questions. From the codes, broader themes or patterns were identified and these provided a framework for analysis. This step-by-step process of content analysis has been described by Braun and Clarke [31] and requires close and careful collaboration by members of the research team. Ongoing collaboration was viewed as an essential component of the study that began before the inception of the project and underpinned all stages of the project. By drawing on the multiple and diverse talents of the research team in a collaborative manner, this study adds to the qualitative evidence base related to Indigenous health.

Issues identified were explored thematically to understand the associations between particular topics [32]. In order to ensure robust analysis, members of the research team reviewed emerging themes throughout the analysis phase. Moreover, members of the research team were directly involved in the collection of data, analysis of the data and the reporting of findings and this meant that the review of themes was informed by insights gained during the various stages of the research process. Several themes or patterns were identified and these formed the key findings that we report here. They are closely linked to the question that this paper asks, “How do Aboriginal and Torres Strait Islander people experience chronic illness in relation to health services?”

This study has one important limitation. Because we recruited participants principally from AMSs, the experiences reported here may not apply to all Aboriginal and Torres Strait Islander people with chronic illness. This includes those people who access health services from non-Aboriginal and Torres Strait Islander services and especially those who do not have regular on-going relationships with primary health care services.

The participants in this study encountered a combination of negative and positive experiences as a result of their illness and struggled to achieve a balance in their lives as they sought to overcome the challenges posed by chronic illness. For some participants, the negative experiences far outweighed the positive and this was associated with highly critical views about the amount and quality of care and support that they received. For several, a history of prejudicial treatment was associated with negative views about health services and health care professionals. Overwhelmingly, however, participants reported factors which, when considered in combination, indicate a repository of cultural resilience that constitutes a form of protection against the harmful effects of sub-optimal care.

This study is important because it is informed by the actual stories and experiences of Aboriginal and Torres Strait Islander people with chronic illness and their carers. From these accounts, it is clear that Aboriginal and Torres Strait Islander people with chronic illness confront a raft of barriers that contribute to poor health outcomes. These barriers relate to stigma and discrimination, and lead to inequitable access to treatment and an increase in risk factors for chronic illness.

In the face of these challenges, Aboriginal and Torres Strait Islander people with chronic illness are well equipped to play a central role in the management of their illness. With appropriate support mechanisms in place, and access to appropriate health services, Aboriginal and Torres Strait Islander people with chronic illness are able to manage their condition, with this leading to enhanced health outcomes.

These findings provide compelling evidence that current non-Indigenous health systems and health care services are failing to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. Moreover, these same health systems expose Aboriginal and Torres Strait Islander people to unacceptable levels of discrimination that undermine efforts to provide fair and equitable health care to all. As this paper has shown, Aboriginal and Torres Strait Islander people have a large repertoire of stories of negative treatment within the health system which have led to the development of an acute awareness of the failure of the health system to behave in a way that is fair and non-discriminatory.

As well as exposing inadequacies, Aboriginal and Torres Strait Islander people are also acutely aware of the ways in which health care provision can be improved. By drawing on knowledge and experience, the people in this study have identified strategic approaches that will enhance health services and contribute to improved health and well-being for Aboriginal and Torres Strait Islander people affected by chronic illness. Non-Indigenous health services in particular would benefit from drawing on these observations to improve the level of service that they provide to Aboriginal and Torres Strait Islander patients, families and communities. By focusing these initiatives on people affected by chronic illness, significant gains will be made and this will benefit generations to come. In the face of an increasing chronic illness epidemic, it is essential that these initiatives be implemented as a matter of urgency.

^aAt the request of the health services with which we worked, we have been asked to use this term to refer to our informants in order to ensure anonymity.