Aboriginal young people's experiences of type 2 diabetes diagnosis, management and support: A qualitative study in the Kimberley region of Western Australia.

ISSUES ADDRESSED: In Australia, Aboriginal and Torres Strait Islander young people in remote settings are most-affected by young onset type 2 diabetes (T2D). It is necessary to understand young people's experiences, including factors impacting on self-management, to improve models of care. METHODS: A phenomenological methodology underpinned this qualitative study in Western Australia's Kimberley region. Two Aboriginal Community Controlled Health Services supported recruitment of seven Aboriginal young people aged 12-24 with T2D, who participated in interviews. A carer and health professional of one young person in each site were also interviewed and relevant medical record data reviewed to assist with triangulation of data. De-identified transcripts were inductively coded and a coding structure developed with oversight by a Kimberley Aboriginal researcher. RESULTS: Young people reported varied experiences and emotions relating to a T2D diagnosis. Most recounted this was upsetting and some reported current negative impact on emotional wellbeing. Challenges with understanding and managing diabetes were highlighted, particularly regarding healthy eating, physical activity and medication. Family are a prominent source of self-management support, with the intergenerational impact of diabetes being evident for each participant. Positive relationships with health professionals, entailing continuity of care, were valued. CONCLUSIONS: There are significant emotional and medical challenges for young people with T2D and their families. Recommendations from this work will contribute to the development of local resources and initiatives to improve diabetes-related support. SO WHAT?: Alongside broader efforts to support good health at the societal level, enhanced health education and family-oriented support structures including Aboriginal clinical staff for young people with T2D are needed.

Racial microaggressions and interculturality in remote Central Australian Aboriginal healthcare.

BACKGROUND: An epidemic of type 2 diabetes in remote Aboriginal people in Central Australia, contributes to high rates of morbidity and mortality. Remote non-Aboriginal Health Care Workers (HCW) and the Aboriginal people they serve inhabit a complex cultural interface. This study aimed to recognise racial microaggressions in the everyday discourse of HCWs. It proposes a model of interculturality for remote HCWs that avoids racialisation and essentialising of Aboriginal people's identities and cultures. METHODS: Semi-structured in-depth interviews were undertaken with HCWs from two Primary Health Care services in very remote Central Australia. Fourteen interviews were analysed from seven Remote Area Nurse, five Remote Medical Practitioners and two Aboriginal Health Practitioners. Discourse analysis was employed to explore racial microaggressions and power relations. NVivo software assisted in the thematic organisation of microaggressions according to a predefined taxonomy. RESULTS: Seven microaggression themes were identified - racial categorization and sameness, assumptions about intelligence and competence, false colour blindness, criminality and dangerousness, reverse racism and hostility, treatment as second-class citizens and pathologizing culture. A model of interculturality for remote HCWs was based on concepts of the third space, deCentred hybrid identities and small culture formation on-the-go combined with a duty-conscious ethic, cultural safety and humility. CONCLUSIONS: Racial microaggressions are common in the discourse of remote HCWs. The model of interculturality proposed could improve intercultural communication and relationships between HCWs and Aboriginal people. This improved engagement is required to address the current diabetes epidemic in Central Australia.

Incorporating Aboriginal women's voices in improving care and reducing risk for women with diabetes in pregnancy - A phenomenological study.

BACKGROUND: There is a high burden of gestational diabetes (GDM) and type 2 diabetes in pregnancy for Aboriginal and Torres Strait Islander women. Postpartum diabetes programs have the potential to prevent recurrent GDM and improve management of type 2 diabetes. However, data on such programs are limited, particularly in the Indigenous context. We aimed to explore Aboriginal Australian women's and health providers' preferences for a program to prevent and improve diabetes after pregnancy. METHODS: A phenomenological methodology underpinned semi-structured in-depth interviews with eleven Aboriginal women and seven health professionals across the Northern Territory from October 2019- February 2020. Interviews were analysed using an inductive analysis framework to address the barriers and enablers of proposed diabetes prevention programs identified by participants. RESULTS: Identified structural barriers to lifestyle change included: food insecurity, persuasive marketing of unhealthy food options, lack of facilities and cultural inappropriateness of previous programs. Enablers to lifestyle change included: a strong link between a healthy lifestyle and connection with Country, family and community. Suggested strategies to improve lifestyle included: co-designed cooking classes or a community kitchen, team sports and structural change (targeting the social determinants of health). Lifestyle change was preferred over metformin to prevent and manage diabetes after pregnancy by participants and health care providers. CONCLUSIONS: We recommend individual level programs be designed alongside policies that address systemic inequalities. A postpartum lifestyle program should be co-designed with community members and grounded in Aboriginal conceptions of health to adequality address the health disparities experienced by Aboriginal people in remote communities.

Exploring differences in perceptions of child feeding practices between parents and health care professionals: a qualitative study.

BACKGROUND: Evidence on child feeding practice is often based on the perspectives and experiences of parents and less that of health practitioners. In this study, we explored child feeding practice in Aboriginal communities in northern Australia from both the parents and health practitioners' perspectives with the aim of informing nutrition improvement programs. METHODS: Qualitative research methods were employed. Using semi-structured interviews, parents (n = 30) of children aged 2-5 years, and 29 service providers who were involved in the delivery of child health and nutrition programs in the same communities, were asked about child feeding attitudes and practices. Responses were analyzed through inductive and deductive analysis, recognizing that worldviews influence child feeding practices. RESULTS: Sharing food was a central practice within families. Parents highly valued development of child independence in food behavior but were conflicted with the easy access to unhealthy food in their communities. This easy access to unhealthy food and inadequate food storage and kitchen facilities for some families were major challenges to achieving optimal diets for children identified by Aboriginal families and service providers. The responsive style of parenting described by parents was often misunderstood by service providers as sub-optimal parenting when viewed through a dominant western lens. CONCLUSIONS: Approaches to support healthy feeding practices and optimal child nutrition require health-enabling food environments. Along with a community-based Aboriginal health workforce, it is paramount that the non-Aboriginal workforce be supported to be reflective of the impact of worldview on their practice, to ensure a culturally safe environment for families where parenting styles are understood and appropriately supported.

Misoprostol for the prevention of post-partum haemorrhage in Mozambique: an analysis of the interface between human rights, maternal health and development.

BACKGROUND: Mozambique has high maternal mortality which is compounded by limited human resources for health, weak access to health services, and poor development indicators. In 2011, the Mozambique Ministry of Health (MoH) approved the distribution of misoprostol for the prevention of post-partum haemorrhage (PPH) at home births where oxytocin is not available. Misoprostol can be administered by a traditional birth attendant or self-administered. The objective of this paper is to examine, through applying a human rights lens, the broader contextual, policy and institutional issues that have influenced and impacted the early implementation of misoprostol for the prevention of PPH. We explore the utility of rights-based framework to inform this particular program, with implications for sexual and reproductive health programs more broadly. METHODS: A human rights, health and development framework was used to analyse the early expansion phase of the scale-up of Mozambique's misoprostol program in two provinces. A policy document review was undertaken to contextualize the human rights, health and development setting in Mozambique. Qualitative primary data from a program evaluation of misoprostol for the prevention of PPH was then analysed using a human rights lens; these results are presented alongside three examples where rights are constrained. RESULTS: Structural and institutional challenges exacerbated gaps in the misoprostol program, and sexual and reproductive health more generally. While enshrined in the constitution and within health policy documents, human rights were not fully met and many individuals in the study were unaware of their rights. Lack of information about the purpose of misoprostol and how to access the medication contributed to power imbalances between the state, health care workers and beneficiaries. The accessibility of misoprostol was further limited due to dynamics of power and control. CONCLUSIONS: Applying a rights-based approach to the Mozambican misoprostol program is helpful in contextualising and informing the practical changes needed to improve access to misoprostol as an essential medicine, and in turn, preventing PPH. This study adds to the evidence of the interconnection between human rights, health and development and the importance of integrating the concepts to ensure women's rights are prioritized within health service delivery.

Improving postpartum screening after diabetes in pregnancy: Results of a pilot study in remote Australia.

BACKGROUND: The postpartum period is a critical time to improve health outcomes for Aboriginal women, particularly for those who have chronic conditions. AIMS: To assess enhanced support methods (for women following diabetes in pregnancy (DIP)) to improve completion rates of recommended postpartum health checks. MATERIALS AND METHODS: Fifty-three Aboriginal women in the Northern Territory (NT) were contacted in the postpartum period to encourage medical check-ups. Messages were delivered through phone (call or text messages) or other methods (Facebook or email). The primary outcome was postpartum blood glucose testing (oral glucose tolerance testing (OGTT), random or fasting glucose and HbA1c). RESULTS: Establishing contact with women was difficult. Of 137 messages sent to 52 women, 22 responded (42%). Phone was the most common contact method with successful contact made from 16 of 119 (13%) attempts. Rates of postpartum OGTT completion were higher in the group successfully contacted (32% vs 7%). However, for any postpartum glucose testing (including OGTT and HbA1c) rates were 25 of 42 (60%) and neither success in making contact nor the contact method was associated with higher rates. CONCLUSIONS: The small sample size limits our conclusions; however, results highlight that engaging remote women postpartum is difficult. While rates of postpartum OGTT completion differed according to successful contacts, rates of any postpartum blood glucose testing did not. Further research is needed to explore feasible intervention methods to improve postpartum screening after a pregnancy complicated by diabetes.

Supporting healthy lifestyles for First Nations women and communities through co-design: lessons and early findings from remote Northern Australia.

Background: The period before, during, and after pregnancy presents an opportunity to reduce diabetes-related risks, which in Australia disproportionately impact Aboriginal and Torres Strait Islander women. Collaboration with Aboriginal and Torres Strait Islander women/communities is essential to ensure acceptability and sustainability of lifestyle modifications. Using a novel co-design approach, we aimed to identify shared priorities and potential lifestyle strategies. We also reflected on learnings from this approach. Methods: We conducted 11 workshops and 8 interviews at two sites in Australia's Northern Territory (Central Australia and Top End), using experience-based co-design (EBCD) and incorporating principles of First Nations participatory research. Workshops/interviews explored participant' experiences and understanding of diabetes in pregnancy, contextual issues, and potential lifestyle strategies. Participants included three groups: 1) Aboriginal and Torres Strait Islander women of reproductive age (defined as aged 16-45 years); 2) Aboriginal and Torres Strait Islander community members; and 3) health/community services professionals. The study methodology sought to amplify the voices of Aboriginal women. Findings: Participants included 23 women between ages 16-45 years (9 with known lived experience of diabetes in pregnancy), 5 community members and 23 health professionals. Key findings related to identified priority issues, strategies to address priorities, and reflections on use of EBCD methodology. Priorities were largely consistent across study regions: access to healthy foods and physical activity; connection to traditional practices and culture; communication regarding diabetes and related risks; and the difficulty for women of prioritising their health among competing priorities. Strategies included implementation of a holistic women's program in Central Australia, while Top End participants expressed the desire to improve nutrition, peer support and community awareness of diabetes. EBCD provided a useful structure to explore participants' experiences and collectively determine priorities, while allowing for modifications to ensure co-design methods were contextually appropriate. Challenges included the resource-intensive nature of stakeholder engagement, and collaborating effectively with services and communities when researchers were "outsiders". Conclusions: A hybrid methodology using EBCD and First Nations participatory research principles enabled collaboration between Aboriginal women, communities and health services to identify shared priorities and solutions to reduce diabetes-related health risks. Genuine co-design processes support self-determination and enhance acceptability and sustainability of health strategies.

Codesigning enhanced models of care for Northern Australian Aboriginal and Torres Strait Islander youth with type 2 diabetes: study protocol.

INTRODUCTION: Premature onset of type 2 diabetes and excess mortality are critical issues internationally, particularly in Indigenous populations. There is an urgent need for developmentally appropriate and culturally safe models of care. We describe the methods for the codesign, implementation and evaluation of enhanced models of care with Aboriginal and Torres Strait Islander youth living with type 2 diabetes across Northern Australia. METHODS AND ANALYSIS: Our mixed-methods approach is informed by the principles of codesign. Across eight sites in four regions, the project brings together the lived experience of Aboriginal and Torres Strait Islander young people (aged 10-25) with type 2 diabetes, their families and communities, and health professionals providing diabetes care through a structured yet flexible codesign process. Participants will help identify and collaborate in the development of a range of multifaceted improvements to current models of care. These may include addressing needs identified in our formative work such as the development of screening and management guidelines, referral pathways, peer support networks, diabetes information resources and training for health professionals in youth type 2 diabetes management. The codesign process will adopt a range of methods including qualitative interviews, focus group discussions, art-based methods and healthcare systems assessments. A developmental evaluation approach will be used to create and refine the components and principles of enhanced models of care. We anticipate that this codesign study will produce new theoretical insights and practice frameworks, resources and approaches for age-appropriate, culturally safe models of care. ETHICS AND DISSEMINATION: The study design was developed in collaboration with Aboriginal and Torres Strait Islander and non-Indigenous researchers, health professionals and health service managers and has received ethical approval across all sites. A range of outputs will be produced to disseminate findings to participants, other stakeholders and the scholarly community using creative and traditional formats.

"It Empowers You to Empower Them": Health Professional Perspectives of Care for Hyperglycaemia in Pregnancy Following a Multi-Component Health Systems Intervention.

The Northern Territory (NT) and Far North Queensland (FNQ) have a high proportion of Aboriginal and Torres Strait Islander women birthing who experience hyperglycaemia in pregnancy. A multi-component health systems intervention to improve antenatal and postpartum care in these regions for women with hyperglycaemia in pregnancy was implemented between 2016 and 2019. We explored health professional perspectives on the impact of the intervention on healthcare. The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance) underpinned this mixed-methods evaluation. Clinicians were surveyed before (n = 183) and following (n = 137) implementation. The constructs explored included usual practice and satisfaction with care pathways and communication between services. Clinicians, policymakers and the implementation team were interviewed (n = 36), exploring the impact of the health systems intervention on practice and systems of care. Survey and interview participants reported improvements in clinical practice and systems of care. Self-reported glucose screening practices improved, including the use of recommended tests (72.0% using recommended first-trimester screening test at baseline, 94.8% post-intervention, p < 0.001) and the timing of postpartum diabetes screening (28.3% screening at appropriate interval after gestational diabetes at baseline, 66.7% post-intervention, p < 0.001). Health professionals reported multiple improvements to care for women with hyperglycaemia in pregnancy following the health systems intervention.

"Sometimes Our Mob Don't Really Take It Serious Until It's Serious": The Experiences of Western Australian Aboriginal Adolescents Living With Type 2 Diabetes, Their Parents, and Their Family Members.

OBJECTIVES: In Australia, Aboriginal children experience disproportionate rates of type 2 diabetes (T2D) compared with non-Aboriginal children. The aim of this qualitative study was to explore the experiences of Aboriginal adolescents with T2D and their family members to better understand the influences of T2D on self-management, with findings used to inform an enhanced service model of care. METHODS: Semistructured interviews were conducted with purposively selected Western Australian Aboriginal adolescents with T2D and their parents and guardians. Interviews were transcribed verbatim and analyzed with NVivo software using interpretative thematic analysis; overarching themes were generated. RESULTS: Interviews with 24 participants, including 8 adolescents aged 11 to 16 years, were conducted across 4 regions of Western Australia. A high proportion of these adolescents were diagnosed with T2D during an unrelated hospitalization or medical appointment. Most did not fully understand or were unaware of the long-term impact of T2D. Discussions about diabetes within families did not typically occur, and shame and concealment of the diagnosis was a common finding. The parents of the adolescents described the diagnosis of T2D as compounding an already challenging set of circumstances for the family; this impacted their capacity to promote self-management activities and attend hospital and outpatient appointments. CONCLUSIONS: This study privileges the voices of Aboriginal adolescents and family members and offers insight into their personal narrative of living with T2D. Building family and community capacity to normalize preventive activities and manage T2D postdiagnosis is recommended to improve health outcomes.

"I Don't Really Know What Diabetes Is": A Qualitative Study Exploring the Experiences of Aboriginal and Torres Strait Islander Young People Aged 10 to 25 Years Living With Type 2 Diabetes in Northern and Central Australia.

OBJECTIVE: Our aim in this study was to gain an understanding of the experiences of Aboriginal and Torres Strait Islander young people aged 10 to 25 years with type 2 diabetes (T2D) living in Northern and Central Australia. METHODS: In this qualitative study we explored participants' experiences of T2D using a social constructionist epistemology and a phenomenologic methodology. Twenty-seven young people participated in semistructured in-depth interviews from 4 primary health-care sites. RESULTS: Three major constructs emerged. Young people experienced a normalisation-shame paradox in response to their diagnosis (partly related to that "everyone has diabetes," as well as the fear that friends "might judge [me]"), had suboptimal levels of understanding of T2D ("I don't really know what diabetes is. I just need somebody to explain to me a bit more") and experienced multiple barriers inhibiting their T2D management. These included complex lives ("I have a rheumatic heart disease […] then they told me that I have diabetes…I have two things") and the availability of support ("[I] talk to my mum…I talk to my aunty too…I don't talk to anyone else"). Successful management requires support from health professionals and family and includes strengthening social networks and educational opportunities. CONCLUSIONS: Our findings reinforce the need for alternative support systems tailored to the specific needs of young Aboriginal and Torres Strait Islander people with T2D. Enhanced models of care must be codesigned with young people and their communities and include a focus on shifting norms and expectations about youth T2D to reduce diabetes stigma and broaden social support and consider the delivery of health information in youth-friendly environments.

Enablers and barriers to primary healthcare for Aboriginal and Torres Strait Islander adolescents: study protocol for participatory mixed-methods research that builds on WHO global standards.

INTRODUCTION: One-third of Australia's Aboriginal and Torres Strait Islander population are adolescents. Recent data highlight their health needs are substantial and poorly met by existing services. To design effective models of primary healthcare, we need to understand the enablers and barriers to care for Aboriginal and Torres Strait Islander adolescents, the focus of this study. METHODS AND ANALYSIS: This protocol was codesigned with Apunipima Cape York Health Council that supports the delivery of primary healthcare for 11 communities in Far North Queensland. We framed our study around the WHO global standards for high-quality health services for adolescents, adding an additional standard around culturally safe care. The study is participatory and mixed methods in design and builds on the recommended WHO assessment tools. Formative qualitative research with young people and their communities (exploring concepts in the WHO recommended quantitative surveys) seeks to understand demand-side enablers and barriers to care, as well as preferences for an enhanced response. Supply-side enablers and barriers will be explored through: a retrospective audit of clinic data (to identify current reasons for access and what can be strengthened); an objective assessment of the adolescent friendliness of clinical spaces; anonymous feedback from adolescent clients around quality of care received and what can be improved; and surveys and qualitative interviews with health providers to understand their perspectives and needs to provide enhanced care. This codesigned project has been approved by Apunipima Cape York Health Council and Far North Queensland Human Research Ethics Committee. DISSEMINATION AND IMPLICATIONS: The findings from this project will inform a codesigned accessible and responsive model of primary healthcare for Aboriginal and Torres Strait Islander adolescents.

The Adaptation of a Youth Diabetes Prevention Program for Aboriginal Children in Central Australia: Community Perspectives.

This study reports on integrating community perspectives to adapt a family-focused, culturally appropriate behavioural intervention program to prevent diabetes among Aboriginal children (6-11 years) in Central Australia. A participatory action research approach was used to engage a range of service providers, cultural advisors, and family groups. Appropriateness, acceptability, content, and delivery of a prevention program within the Central Australian context were discussed through a series of workshops with twenty-five service providers and seven family groups separately. The data obtained were deductively coded for thematic analysis. Main findings included: (i) the strong need for a diabetes prevention program that is community owned, (ii) a flexible and culturally appropriate program delivered by upskilling community members as program facilitators, and (iii) consideration of social and environmental factors when implementing the program. It is recommended that a trial of the adapted prevention program for effectiveness and implementation is led by an Aboriginal community-controlled health service.

Improving systems of prenatal and postpartum care for hyperglycemia in pregnancy: A process evaluation.

OBJECTIVE: To identify successes to date and opportunities for improvement in the implementation of a complex health systems intervention aiming to improve prenatal and postpartum care and health outcomes for women with hyperglycemia in pregnancy in regional and remote Australia. METHODS: A qualitative evaluation, underpinned by the RE-AIM framework (reach, effectiveness, adoption, implementation, maintenance), was conducted mid-intervention. Semi-structured interviews were conducted with the participants, who included clinicians, regional policymakers and managers, and study implementation staff. RESULTS: Interviewees (n = 45) reported that the early phase of the intervention had resulted in the establishment of a clinician network, increased clinician awareness of hyperglycemia in pregnancy, and improvements in management, including earlier referral for specialist care and a focus on improving communication with women. Enablers of implementation included existing relationships with stakeholders and alignment of the intervention with health service priorities. Challenges included engaging remote clinicians and the labor-intensive nature of maintaining a clinical register of women with hyperglycemia in pregnancy. CONCLUSION: The early phase of this health systems intervention has had a positive perceived impact on systems of care for women with hyperglycemia in pregnancy. Findings have informed modifications to the intervention, including the development of a communication and engagement strategy.

Primary Health Care for Aboriginal Australian Women in Remote Communities after a Pregnancy with Hyperglycaemia.

BACKGROUND: Hyperglycaemia in pregnancy contributes to adverse outcomes for women and their children. The postpartum period is an opportune time to support women to reduce cardiometabolic and diabetes risk in subsequent pregnancies. AIMS: To identify strengths and gaps in current care for Aboriginal women after a pregnancy complicated by hyperglycaemia. METHODS: A retrospective review of the 12 month postpartum care provided by primary health centres in remote Australia in 2013-2014 identified 195 women who experienced hyperglycaemia in pregnancy (gestational diabetes (GDM) (n = 147), type 2 diabetes (T2D) (n = 39), and unclear diabetes status (n = 9)). RESULTS: Only 80 women (54%) with GDM had postpartum glycaemic checks. Of these, 32 women were diagnosed with prediabetes (n = 24) or diabetes (n = 8). Compared to women with GDM, women with T2D were more likely to have their weight measured (75% vs. 52%, p <0.01), and smoking status documented as "discussed" (65% vs. 34%, p < 0.01). Most women (97%) accessed the health centre at least once in the 12 month postpartum period but, during these visits, only 52% of women had service provision, either structured or opportunistic, related to diabetes. CONCLUSION: High rates of dysglycaemia among women screened for T2D after GDM in the 12 month postpartum period highlight the need for increased screening and early intervention to prevent the development of T2D and its complications. Whilst a clear strength was high postpartum attendance, many women did not attend health services for diabetes screening or management.

'We can work together, talk together': an Aboriginal Health Care Home.

Objective The aim of this study was to identify an Aboriginal community's aspirations for health service improvement during implementation of the Commonwealth's Health Care Homes (HCH) reform. Methods This study was a qualitative study consisting of Aboriginal-controlled phenomenological enquiry in a large Aboriginal community in north-central Arnhem Land. Results A representative sample of 60 Aboriginal health service users identified shortcomings in their current experience of primary health care, including low cultural security. These shortcomings reduced access to care. Participants described several ways that care could be reorientated to match their needs during HCH implementation. Principally, patients voiced the need for: (1) restructuring care teams to foster culturally secure relationship-based care; and (2) reorientating the Aboriginal Health Practitioner role from acute care to strength-based competencies as the focal point of care continuity: self-management support, care coordination and navigation, health coaching and cultural mentorship for non-Aboriginal staff. Conclusions For HCH to be successful, service providers need to engage with service users to identify and implement patient-centred strategies to improve access, acceptability and patient activation. What is known about the topic? Success of the Commonwealth's HCH reform is contingent on improving care access and patient activation to better manage chronic conditions What does this paper add? This is the first opportunity that this Aboriginal community has had to articulate their aspirations for high quality healthcare. Beyond the strong alignment with the HCH building blocks, their care preferences posit practical and achievable workforce and delivery system reforms that may improve primary health care in other remote Aboriginal communities. What are the implications for practitioners? The long-term success of the HCH reform will require iterative engagement with service users to identify and implement patient-centred strategies to improve access and acceptability of care. Service model alignment with patient care preferences will improve patient activation and is particularly important when working with vulnerable populations.

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.

BACKGROUND: Australian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs. AIM: To describe the experiences of health care users of a large government kidney healthcare service provider. METHODS: Within a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions. RESULTS: Client characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function. CONCLUSION: Four major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

Improving Models of Care for Diabetes in Pregnancy: Experience of Current Practice in Far North Queensland, Australia.

Aims: To map health practitioners' experiences and describe knowledge regarding screening and management of Diabetes in Pregnancy (DIP) in Far North Queensland, Australia. Methods: Mixed methods including a cross-sectional survey (101 respondents) and 8 focus groups with 61 health practitioners. All participants provided clinical care for women with DIP. Results: A wide range of healthcare professionals participated; 96% worked with Indigenous women, and 63% were from regional or remote work settings. Universal screening for gestational diabetes at 24-28 weeks gestation was reported as routine with 87% using a 75 g Oral Glucose Tolerance Test. Early screening for DIP was reported by 61% although there was large variation in screening methods and who should be screened <24 weeks. Health practitioners were confident providing lifestyle advice (88%), dietary, and blood glucose monitoring education (67%, 81%) but only 50% were confident giving insulin education. Electronic medical records were used by 80% but 55% also used paper records. Dissatisfaction with information from hospitals was reported by 40%. In the focus groups improving communication and information technology systems were identified as key areas. Other barriers described were difficulties in care coordination and access for remote women. Conclusions: Communication, information technology systems, coordination of care, and education for health professionals are key areas that will be addressed by a complex health systems intervention being undertaken by the DIP Partnership in North Queensland.

Real-world experience of metformin use in pregnancy: Observational data from the Northern Territory Diabetes in Pregnancy Clinical Register.

BACKGROUND: In Australia's Northern Territory, Indigenous mothers account for 33% of births and have high rates of hyperglycemia in pregnancy. The prevalence of type 2 diabetes (T2D) in pregnancy is up to 10-fold higher in Indigenous than non-Indigenous Australian mothers, and the use of metformin is common. We assessed birth outcomes in relation to metformin use during pregnancy from a clinical register. METHODS: The study included women with gestational diabetes (GDM), newly diagnosed diabetes in pregnancy (DIP), or pre-existing T2D from 2012 to 2016. Data were analyzed for metformin use in the third trimester. Regression models were adjusted for maternal age, body mass index, parity, and insulin use. RESULTS: Of 1649 pregnancies, 814 (49.4%) were to Indigenous women, of whom 234 (28.7%) had T2D (vs 4.6% non-Indigenous women; P < 0.001). Metformin use was high in Indigenous women (84%-90% T2D, 42%-48% GDM/DIP) and increased over time in non-Indigenous women (43%-100% T2D, 14%-35% GDM/DIP). Among Indigenous women with GDM/DIP, there were no significant differences between groups with and without metformin in cesarean section (51% vs 39%; adjusted odds ratio [aOR] 1.25, 95% confidence interval [CI] 0.87-1.81), large for gestational age (24% vs 13%; aOR 1.5, 95% CI 0.9-2.5), or serious neonatal adverse events (9.4% vs 5.9%; aOR 1.32, 95% CI 0.68-2.57). Metformin use was independently associated with earlier gestational age (37.7 vs 38.5 weeks), but the risk did not remain independently higher after exclusion of women managed with medical nutrition therapy alone, and the increase in births <37 weeks was not significant on multivariate analysis. CONCLUSIONS: We found no clear evidence of any adverse outcomes related to the use of metformin for the treatment of hyperglycemia in pregnancy.

Implementation of a diabetes in pregnancy clinical register in a complex setting: Findings from a process evaluation.

BACKGROUND: Rates of diabetes in pregnancy are disproportionately higher among Aboriginal than non-Aboriginal women in Australia. Additional challenges are posed by the context of Aboriginal health including remoteness and disadvantage. A clinical register was established in 2011 to improve care coordination, and as an epidemiological and quality assurance tool. This paper presents results from a process evaluation identifying what worked well, persisting challenges and opportunities for improvement. METHODS: Clinical register data were compared to the Northern Territory Midwives Data Collection. A cross-sectional survey of 113 health professionals across the region was also conducted in 2016 to assess use and value of the register; and five focus groups (49 healthcare professionals) documented improvements to models of care. RESULTS: From January 2012 to December 2015, 1,410 women were referred to the register, 48% of whom were Aboriginal. In 2014, women on the register represented 75% of those on the Midwives Data Collection for Aboriginal women with gestational diabetes and 100% for Aboriginal women with pre-existing diabetes. Since commencement of the register, an 80% increase in reported prevalence of gestational diabetes among Aboriginal women in the Midwives Data Collection occurred (2011-2013), prior to adoption of new diagnostic criteria (2014). As most women met both diagnostic criteria (81% in 2012 and 74% in 2015) it is unlikely that the changes in criteria contributed to this increase. Over half (57%) of survey respondents reported improvement in knowledge of the epidemiology of diabetes in pregnancy since establishment of the register. However, only 32% of survey respondents thought that the register improved care-coordination. The need for improved integration and awareness to increase use was also highlighted. CONCLUSION: Although the register has not been reported to improve care coordination, it has contributed to increased reported prevalence of gestational diabetes among high risk Aboriginal women, in a routinely collected jurisdiction-wide pregnancy dataset. It has therefore contributed to an improved understanding of epidemiology and disease burden and may in future contribute to improved management and outcomes. Regions with similar challenges in context and high risk populations for diabetes in pregnancy may benefit from this experience of implementing a register.