INDIGENOUS HEALTH
Theory that explains an Aboriginal perspective of learning to understand and manage diabetes Emma Webster,1 Craig Johnson,2 Bernie Kemp,3 Valerie Smith,3 Monica Johnson,4 Billie Townsend1
D
iabetes is complicated. The person with diabetes, the treating team and the health system all grapple with the intricacies of diabetes care. Integrated care, which is coordinated and encompasses health and social needs of those receiving care, is widely regarded as the solution.1,2
Abstract Objective: To use grounded theory and participatory research methodology to explain how Aboriginal people learn to understand and manage type 2 diabetes. Methods: Aboriginal people with diabetes were invited to participate in one of five focus groups (n=25, male=12, female=13). Focus groups and education sessions were conducted by Aboriginal members of the research team. Focus groups were audio recorded and transcribed, with coding and first level analysis undertaken by all members of the research team.
Almost 5,000 Aboriginal people live in Dubbo, a regional city of 40,000 in New South Wales (NSW).3 Considering the prevalence of type 2 diabetes in adults in NSW is 8% and that in remote Aboriginal settlements around 30%,4 we would expect between 200 and 750 Aboriginal people in Dubbo to have diabetes. Local services estimate between 41 and 174 Aboriginal people with type 2 diabetes.5 These estimates demonstrate the likelihood that many Aboriginal people have undiagnosed diabetes or are not supported by health services to manage their diabetes. This data provided the rationale for a wholeof-locality approach to improve diabetes care, which assumed that the model of care experienced by patients determined how Aboriginal people understood and managed their diabetes.
demonstrated that Aboriginal Health Worker led care increased the likelihood of a general practice management plan being in place and improved clinical indicators, including a 1% improvement in glycaemic control.9
The best care for people with diabetes is care led by a health professional in conjunction with the client. In NSW, the preferred model is general practitioner coordinated care,4 which entails general practitioners and their practice nurses carrying out health assessments and monitoring, and the engagement of a multi-disciplinary team to work with the patient to set mutually acceptable and achievable health goals.6 Aboriginal Health Workers have long been seen as part of best practice in improving diabetes care in Aboriginal communities.7,8 A recent pragmatic randomised control trial in remote Australian Indigenous communities
Existing literature on care for Aboriginal people highlights the importance of primary care, integrated care and care that provides a culturally safe environment for management of chronic disease.10-12 Yet while health assessments on Aboriginal people have increased in primary care settings, follow-up treatment for identified problems is poor13 and unacceptably large gaps exist between evidence and practice.12 Stigma, discrimination and racism are experienced by Aboriginal people in health service contexts10,14 and power imbalances between Aboriginal patients and health services continue to limit cultural safety.14-16
Results: Participants described colonisation and dislocation from Country and family members’ experiences with diabetes as significant historical influences which, in conjunction with the model of care experienced and the type of interaction with health services, shaped how they came to understand and manage their diabetes. Conclusions: Patient experience of a model of care alone is not what influences understanding and management of diabetes in Aboriginal people. Implications for Public Health: Health service improvements should focus on understanding past experiences of Aboriginal patients, improving interactions with health services and supporting holistic family centred models of care. Focusing on just the model of care in absence of other improvements is unlikely to deliver health benefits to Aboriginal people. Key words: Aboriginal health, diabetes models of care, participatory research methods, integrated care Learning to understand and manage diabetes consists of the acquisition of knowledge and skills through being taught, studying or from experience. This study aimed to identify the model of care currently experienced by Aboriginal patients as it was assumed that improvement to the model of care was the key to Aboriginal people learning to understand and manage their type 2 diabetes. The reader will see the error in our assumption, and learn of the various factors that have influenced how Aboriginal people come to understand and manage their diabetes.
Method This project was a collaborative effort between four organisations. An important aspect to the study was the intentional privileging of Aboriginal knowledge
1. School of Rural Health, University of Sydney, New South Wales 2. Western NSW Local Health District, New South Wales 3. Dubbo Regional Aboriginal Health Service, New South Wales 4. Marathon Health, New South Wales Correspondence to: Dr Emma Webster, School of Rural Health, University of Sydney, PO Box 1043, Dubbo, NSW 2830; e-mail:
[email protected] Submitted: February 2016; Revision requested: May 2016; Accepted: July 2016 The authors have stated they have no conflict of interest.
The copyright line for this article was corrected on 17 January 2018, after original issue publication. Aust NZ J Public Health. 2017; 41:27-31; doi: 10.1111/1753-6405.12605
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alongside research knowledge. This had the effect of equalising the relationship between all researchers and meant each of the team led the research at different times through the process. The research team consisted of two male Aboriginal Health Workers who are qualified diabetes educators, two female Aboriginal Health Workers and two nonAboriginal women, one experienced and the other inexperienced with regard to research.
diagnosed diabetes was sought to ensure their perspectives were included. Two supplementary interviews were sought; however, no interviews resulted.
Grounded theory is inductive in nature and assumes that substantive theory can be derived from data to explain social processes.17,18 This qualitative study drew on both grounded theory and participatory research methods19 and was informed by constructivist epistemology. Community groups popular with Aboriginal people were approached with prior permission and the research was explained. Names of interested participants were noted and contacted when the next suitable focus group was planned. Extensive discussions about approach to potential participants concluded that it is desirable for prospective participants (either individuals or groups) to have an existing relationship with a co-researcher (which may or may not be a therapeutic relationship) as trust is considered an important element of giving free and informed consent (that is, potential participants would feel more able to say ‘no’ to joining the research when they trust members of the research team). Five gender-specific focus groups (n=2 female and n=3 male) were conducted in English (language spoken at home) and audio-recorded (85 to 108 minutes) with written consent of all members. Demographic details were recorded before the focus group began. Conversational transcripts were produced and pseudonyms allocated to ensure anonymity. Three to five members of the research team were present during each focus group and rotated the roles of facilitator, organiser and note taker. Focus group questions and roles were piloted with Aboriginal Health Workers employed by a local health service. The focus group used a ‘conversation map’20,21 aided by conversation cards to stimulate discussion and ensure each participant had a turn to answer first. The ‘understanding your diabetes’ conversation map is a diabetes education tool and was familiar to some participants. The sample size of five groups was predetermined. While focus group data were extensive (320 transcript pages for analysis), theoretical sampling for people with newly
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Twenty-five Aboriginal people who lived in Dubbo, had been diagnosed with and were receiving treatment for diabetes, participted in the study. Men (n=12) and women (n=13) mean age 67 (range 27-88) with diagnosis of diabetes (range ‘pre-diabetic’ to 46 years since diagnosis) were included. Almost all (n=22) reported a family history of diabetes. Tablets were the most common form of diabetes management (n=17) followed by diet (n=14) and insulin (n=12). Five participants used all three methods to control their diabetes. Grounded theory involves commencing analysis from the first data collection event and uses open coding to identify in vivo codes that can be compiled into categories and concepts.17,18 Coding was done by hand and open coding on the first focus group was undertaken by all researchers; combinations of the research team coded the remaining transcripts and participated in discussion, and constant comparison of codes and incidents. Grounded theory uses memos as an analytic tool. This study used three types of memos. Memos were produced with each data collection event (based on research team debrief), occasional ‘top line’ memos described progress and concept memos defined, described and attempted to understand each concept and compare and relate these to other concepts. Memos were discussed among the research team and diagrammatic models prepared to facilitate transition from codes and concepts to an explanatory scheme.17 Ethics approval was received from the NSW Aboriginal Health and Medical Research Council and the Greater Western Human Research Ethics Committee.
Results Our theory explains that there are four influences that shape how Aboriginal people learn to understand and manage diabetes: continuing effects of colonisation, seeing family members suffer from diabetes, interaction with health services, and the model of health care received. Each of these four exerts a greater or lesser influence on how an individual learns about and comes to manage diabetes (see Figure 1).
Colonisation Participant stories demonstrated colonisation and dislocation of Aboriginal people from Country continues to have a direct effect on
health, including reduced access to bush medicines and traditional foods. Participants outlined that modern day policies limited desired hunting and fishing practices. “The government bloke was there trying to tell us that if we wanted to go out and shoot a roo and eat it, we had to apply to Canberra first, and one old fella (said) … “My kids want it tonight not next week or the week after.” Travis FG1 920-929 “Well I walked around here on the riverbank and I can’t find the tree I was looking for. Yeah, I’d drink it and I’d bathe in it and I used to bathe my kids in it in the winter time, they never got a cold. It was good stuff ... None growing down here ‘cause I looked and looked and looked and I couldn’t find any.” Pete FG1 1271-1275 At a population level, participants attributed prevalence of diabetes in Aboriginal communities to the introduction of European food and sedentary lifestyles. “Well you’ve only got to think about it, the amount of food we have now, nearly every processed foods that we’ve got is sugar, sugar, sugar… the only sugar we used to have was the wild sugar you found while you were walking around”. Travis FG1 1074-1077
Family members’ diabetes experiences Most participants had a family history of diabetes, and realised that family history was important in terms of their own health. All were acutely aware of symptoms and complications of diabetes as a result of seeing numerous family members get sick, suffer and die from the disease. “… my mother died from it. She went blind and everything … And my two brothers both had it. One died of a heart attack, and my other brother he has diabetes and they had him on insulin ...” Kurt FG3 120-123 “… I saw my mother go through hell … My mother died and my grandmother, her mother. She was totally blind by the time she was 60 and now it’s all reflecting on me …” Bianca FG4 88-92 The high prevalence of diabetes in Aboriginal families increases exposure to experiential learning and the cultural practice of intergenerational learning as a result of being party to these experiences shapes learning about treatment regimens and management practices.
Interaction with health services Participants felt that only Aboriginal people could truly understand Aboriginal culture and disadvantage and expressed distrust in a system that tells Aboriginal people how
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Figure 1: Theory that explains an Aboriginal perspective of learning to understand and manag diabetes. to live their lives, but has limited Aboriginal leaders or cultural voices within that system.
Figure 1: Theory that explains an Aboriginal perspective of learning to understand and manage diabetes.
“… they’re (white people) the ones who run the diabetic programs, they’re the ones who come up with all these ‘you beaut’ things to do for black people with diabetes … The trouble with that philosophy is ‘cause a white fella, he’ll do that and then he’ll blame you.” Bob FG1 1165-1175
Continuing effects of colonisation
Participants described feeling stereotyped by non-Indigenous health professionals and negative reports of care focused on not feeling heard and a lack of cultural understanding offered by health professionals, resulting in resistance to seek further help. “One of the worst things I come across is because I’m dark skinned, they think I drink and smoke. I never drank or smoked in my life. And the first thing they say is, they don’t even ask the question of me ‘You will have to give up the grog and smokes’, and I said, ‘Mate I’ve never tried it in my life.’” Ross FG1 1064-1067 “They have to understand our culture. That’s the thing, that’s what they’ve got to understand, how we’re used to live like.” Jason FG1 1111-1113
Some participants described positive experiences with their doctor, emphasising these stemmed from professionals who expressed a level of caring and understanding. The (hospital-based) renal physicians provided good support with some participants reporting superior glycaemic control under their care. “No, I feel they’re very good. (The GP) is never in a hurry and neither are the nurses. I can be up there, well last time I went for my check up … I thought, ‘Oh my God, people must be waiting.’ But he was never in a hurry.” Felicity FG4 1526-1530 Participants identified easier communication with Aboriginal staff as they perceived these professionals understood Aboriginal lifestyles. A level of dialogue was more accessible between patients and Aboriginal health professionals, ensuring a more effective transmission of health information to Aboriginal patients.
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Seeing family members with diabetes
Interations with health services
“… she (doctor) came in to talk to me and when she opened her mouth, I thought, oh my God she’s got to be black … I couldn’t help myself. Where are your people from?” Bianca FG4 1422-1433
“… I don’t like going up to some specialist(s) and stuff because I feel like it’s all scare tactics and they’re just trying to shame me and I feel real bad about myself … I prefer not to go because I don’t want to feel that way.” Kaye FG2 2481-2484
“Aboriginal people they know how – what they have to say to them and then they feel comfortable if there was an Aboriginal person sitting the other side of the table to ask them questions, they feel comfortable…” Page FG2 2243-2245
Model of care experienced
Learning to understand and manage diabetes. At the level of the individual each outer circle may have more or less influence on the way the individual comes to understand and manage their diabetes
“The only thing that makes it hard, because I can’t read or write, see. (My Aboriginal Health Worker) understands that, and that’s why he explains it to me.” Curtis FG5 1843-1844
Model of care experienced There was little consistency in terms of a model of care experienced by participants. Some participants reported having their diabetes identified opportunistically when they felt well, such as during a screening event. Others reported being hospitalised before a diagnosis was made. Those who described receiving a general practitioner led model of care found it highly acceptable. Others reported having to continually remind their doctor for routine diabetes care. “Really, really nice … I go every three months and I have a long appointment because first of all I go to the nurse then I go to (the GP) and the nurse weighs you and does all your sugars tells you everything and that and then from there I go to (GP)”. Felicity FG4 223-226 “There’s a lot of doctors and I’ve changed altogether now … Yes, but I got fully strict I can get him to write it out (request for tests of her blood sugar level) and I think I passed most of it (had ‘good’ numbers on her blood tests). So I’ve been nagging (continually reminding) him to do that. I’ve got to go and see him Monday”. Susan FG4 927-930
Participants often adopted self-care measures as a consequence of a communication breakdown with health professionals. Participants indicated feeling let down by the health system, expressed confusion over treatment plans and also developed their own, sometimes questionable strategies for managing diabetes. “I’ve been to a lot of dieticians and they tell you different things and I just work things out for myself.” Vicky FG2 1247-1248 “Doctors – sorry, not doctors, nobody educates you about your diabetes. All they do is tell you you’ve got it, wear it and good luck to you.” Bob FG1 184-186 While participants identified a range of allied health and specialist services they attended after their diabetes diagnosis, there was a general lack of overall knowledge about support services relevant to diabetes. This included podiatry services, exercise classes, chronic disease clinics, yarning groups (social groups where people get together regularly to talk) or transport support to appointments. Many participants felt they had figured diabetes out themselves with assistance from Aboriginal Health Workers and pharmacists. Participants made a number of recommendations to improve diabetes care. A yarning approach (discussing with the patient) using diagrams and manikins to explain diabetes, supplemented with collaborative goal setting and a holistic family-centred approach to diabetes care was recommended. Improving access to services
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by ensuring they are free, that medications are free or subsidised and that free transport is available was also recommended.
and contemporary components (models of care and interactions with health services) that led to the acquisition of knowledge and skill. Each component varied in importance for each person, and all factors continued to exert an influence on management of diabetes over time. In hindsight it is obvious – a model of care is about teaching and providing clinical support, yet learning is a result of teaching, studying or experience.
“Can I just say if you wanted to do something to help blacks with diabetes ... you’ve got to look at developing a holistic approach to it … that holistic approach has to include the family, and … even extended family. So you have to include them in so that they know how to look after people that have problems … If we don’t have that holistic approach, we’re not going to last long.” Bob FG1 1543-1550
Learning to understand and manage diabetes Participants felt they had mastered dealing with hypoglycaemic episodes but found the lifestyle change challenging, including managing medications, regularly measuring blood sugar levels and having routine check-ups and tests. Many had experience of complications. All had goals relating to diabetes and many were extremely motivated to deal with aspects of the disease. “In the supermarkets I’m forever reading the packets, what do they call it? Carbohydrates ‘cause carbohydrates is sugar as well and then underneath you can see sugar, and I always look at that to see how low it is before I buy it ... I’m still doing things wrong, and I’m still learning …” Daniel FG3 217 – 222 Despite having difficulty finding support and sticking with programs, many made lifestyle adjustments after their diagnosis. There were various levels of control and understanding, ranging from very basic understandings to mastery of aspects of the disease such as monitoring blood sugar levels. “So if you know how food affects your body, you can adjust your insulin, like if we’re going to have take-away … So I give myself an extra six units of insulin from when I took my sugar last night before I went to bed, it was five. So I know what foods will send my sugar up and what will drop it … Salads drop my sugar.” Bob FG1 178-184
Discussion While our study aimed to identify the model of care experienced by Aboriginal patients, participants answered our questions in a way that we had not expected. We had assumed that learning about diabetes and its management was a result of receiving a model of care from a team of health professionals. However, participants told us of historical components (colonisation and family members’ experience of diabetes)
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There were several issues in common between our participants and other population groups such as experiences with fragmented care,22,23 different understandings of disease between the patient and the health professional22-24 and experiences of poor communication.25 The health system response to these issues has been to develop models of care4,26 on the premise that optimal diabetes management results from regular monitoring, setting and achieving clinical targets6 supported by service-wide clinical audits.11,27 Normative models of diabetes care primarily describe which health professionals should be seen and what their role is in teaching the patient about diabetes.4 Modification to improve cultural appropriateness of these models has built in identification of Aboriginality and establishing trust.26 Where participants described receiving the general practitioner led model of care,4 they found this an extremely positive experience, appreciating the time that was spent with them in clinical consultations on a regular basis. We also found pharmacists and Aboriginal Health Workers were key agents in helping participants understand diabetes. Neither profession is recognised in the normative models,4,26 despite evidence of the effectiveness of Aboriginal Health Workers as care coordinators.7-9 This would indicate that both an adjustment to the normative model and an improvement in the consistent application of the model is required. Other barriers to accessing primary care include cost, lack of transport and expensive medications and treatments8,22,23 and this was also raised in our study. While refinements to the model of care are still warranted, they are unlikely to deliver anticipated health benefits to Aboriginal people. Furthermore, focusing health system or service redesign on just the model of care has the potential to reinforce stereotypes of both Aboriginal patients and non-Aboriginal health workers, as patients feel blamed when programs designed by well-intentioned non-Aboriginal staff fail to meet their needs. Our theory makes visible the other influences on learning about diabetes and therefore
makes visible alternate ways health systems might attend to improving diabetes care for Aboriginal people. Previous studies have identified transmission of health knowledge from one generation to another as an important cultural practice emphasising the importance of family, peers and social networks in education and support in chronic disease management.10,15 This, and the high prevalence of diabetes in Aboriginal families, increases exposure to experiential learning about diabetes. These factors explain both the power of a holistic family-centred approach to diabetes care and provide an explanation as to why ‘modern’ diabetes management messages from health professionals can lack traction with Aboriginal people, as they can conflict with teachings of the previous generation. Identification of racism in health care in Australia is not new10,14 and negative experiences with health care have an ongoing effect on health seeking behaviours, even across generations.23 Where culturally safe environments are provided they exert a positive influence on chronic disease management.8,10,11 Our participants preferred interacting with Aboriginal staff of all professions as they felt understood and that their culture was acknowledged. NonAboriginal staff could work with Aboriginal employees to drive health service change and to identify how best to work with Aboriginal people and pitch health messages. At a system level, ensuring health services are sufficiently staffed with Aboriginal employees in all professions would provide good support to both the community and non-Aboriginal staff. This support needs to be extended to Aboriginal workers by health services in order for them to be effective in their work roles.28 Colonisation is largely regarded as ‘history’ in Australia, with little regard for contemporary effects on health.29 Our participants drew a link between the prevalence of diabetes and colonisation with its ongoing modification to hunting, fishing and bush medicine practices. In this way, diabetes is symbolic of the dispossession, loss and grief associated with colonisation. Understanding this symbolic link provides the basis of a more empathetic relationship and at a practical level health professionals should be aware that Aboriginal people could be taking bush medicines that may interact with prescribed medications. A recent systematic review of primary health care service or system level attributes identified that the patterns consistently associated with improved glycaemic index control for Indigenous patients were all
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multifactorial in their approach.30 While the inadequacy of the evidence base was noted by the authors, our explanatory theory would suggest the reason for multifactorial success is that this is a complex problem influenced by both contemporary and historical factors.
Limitations Our sample was not representative of all Aboriginal people in Dubbo with diabetes. It is possible our 25 participants represented people who were more interested in their health and already engaged with health services. It is possible their perspectives represented best case scenarios. We were not able to adhere strictly to a grounded theory methodology. We had intended for the concurrent collection and analysis of data, but due to excellent momentum in our data collection and the slow progress of group coding of our first transcript we ran our fifth focus group prior to completing coding on the first transcript. While each transcript was coded in order and compared and contrasted to the developing theory, we were unable to vary questioning in the focus groups in line with the emerging theory and consistent with constant comparison. Second, while constant comparison drove theoretical sampling of newly diagnosed cases we were not able to pursue these as establishment of a sound therapeutic relationship was prioritised over recruitment. We were able to test the theory with data from the five participants who had been diagnosed with diabetes up to three years previously and while the theory holds with these cases we cannot defend saturation of this element. Strengths of the study include the inductive nature of grounded theory and the participatory design and the continued involvement of the research team through to the analysis, interpretation and presentation of study findings. This has provided a level of methodological and particularly interpretive rigour not often found. The study also provided the opportunity for all members of the team to develop research skills, understanding of research techniques and improve cultural understanding.
Conclusion Our study provides an explanation for health practitioners, services and systems to understand how Aboriginal people learn about and manage diabetes. A model of care is a small part of learning to understand and manage diabetes for Aboriginal people.
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Historical factors such as colonisation and witnessing family members suffering from diabetes are also critical influences, along with interaction with the health service. While general practitioner led care for diabetes management was highly acceptable to Aboriginal people in Dubbo, few had experienced it and many pointed to pharmacists and Aboriginal Health Workers as those professionals who had helped them figure out diabetes. This would indicate that both adjustment to the normative model and an improvement in the consistent application of the model is required. Continued emphasis on health system and service improvements should focus on supporting holistic patient centred and family centred models of care to build on to the cultural acceptability of intergenerational learning. Improving cultural knowledge of non-Aboriginal health professionals and ensuring Aboriginal voices can be heard in priority settings at a service level will improve service credibility with the Aboriginal community. Employing more Aboriginal people in professional roles and more Aboriginal Health Workers who are qualified diabetes educators helps Aboriginal patients feel they are understood. Future research utilising participatory methods to drive service and system change based on this theory has potential to improve diabetes care for Aboriginal people.
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