A good life for people living with disability: the story from Far North Queensland.

PURPOSE: People with disability in regional, rural and remote Australia have poorer service access compared to people from metropolitan areas. There is urgent need for reform. This study's aim was to explore the needs and aspirations of people with lived experience of disability in Far North Queensland (FNQ) to inform a new service framework. MATERIALS AND METHODS: Twenty-five individuals with diverse experience of disability were engaged in semi-structured interviews. Participants were recruited from four sites that differed geographically, culturally, and socioeconomically. Using an inductive then deductive thematic approach to data analysis, statements of needs and aspirations were compiled and aligned with three pre-determined vision statements. RESULTS: Needs and aspirations aligned well with the vision statements which were to: feel "included, connected, safe and supported"; have "opportunities to choose one's own life and follow one's hopes and dreams"; and have "access to culturally safe services close to home." To realise this vision in FNQ, support to navigate and coordinate services across sectors is essential. CONCLUSION: People of FNQ of all abilities, need and aspire to experience "a good life" like their fellow Australians. Any new service model must focus on providing service navigation and co-ordination amid the complexities of service delivery in FNQ.Implications for RehabilitationThe perspective of people with lived experience of disability needs to be heard and respected when designing services to support them.Service navigation and co-ordination are required to manage the complexity of service delivery for people living in regional, rural and remote Australia.Engaging with the whole the community is prudent when designing community disability, rehabilitation, and lifestyle services in regional, rural, and remote Australia.

Community-driven health research in the Torres Strait.

BACKGROUND: In July 2018, participants at a Waiben (Thursday Island) conference declared that it was time for a locally driven research agenda for the Torres Strait and Queensland Northern Peninsula Area. For decades, they felt exploited by outside researchers. They identified a lack of respect and consultation, with few benefits for their people. METHODS: In response, the Australian Institute of Tropical Health and Medicine (Waiben Campus-Ngulaigau Mudh) invited a consultative group of elders and senior health providers to develop a research program based on local cultural and health needs. The aim was to promote research skills through a learn-by-doing approach. Four workshops were conducted over 2019. Key financial and in-kind support was provided by the Australian Institute of Tropical Health and Medicine, Hot North, and Queensland Health's Torres and Cape Hospital and Health Service. RESULTS: The first workshop attracted 24 people; none had previous research experience. The workshop format evolved over 2019, mainly guided by the participants. Overall, feedback was positive, and participant research proposals remain in various stages of development. CONCLUSIONS: Although suspended during the COVID-19 pandemic, this is a long-term investment in community-driven research that seeks to translate health benefits to the people. This model may apply to other communities, especially in rural and remote Australia. Warning: This article contains the names and/or images of deceased Aboriginal and Torres Strait Islander peoples.

A systematic review of disability, rehabilitation and lifestyle services in rural and remote Australia through the lens of the people-centred health care.

PURPOSE: The aim of this systematic review was to identify models of community disability, rehabilitation and lifestyle service delivery in non-metropolitan areas of Australia, and to describe these models through an Integrated People-Centred Health Services (IPCHS) lens. MATERIALS AND METHODS: We identified peer-reviewed studies published between 2000 and June 2021 that met the following criteria: described or evaluated a community service delivery model, intervention or program in regional, rural or remote Australia; provided for people with a disability or a potentially disabling health condition. A scoring rubric was developed covering the five IPCHS strategies. RESULTS: Nineteen studies were included in the review. We identified a range of service delivery models providing support to people with a range of disabilities or conditions. We report evidence of the use of the IPCHS strategies in ways relevant to the local context. DISCUSSION: Several strengths emerged, with many services tailored to individual need, and significant community engagement. Innovative rural service delivery approaches were also identified. Key areas requiring action included improved coordination or integration within and across professions and sectors. There was limited evidence of co-production of solutions or participatory governance. While people-centred approaches show promise to improve community-based services, large-scale fundamental change is required.IMPLICATIONS FOR REHABILITATIONCommunity-based disability and rehabilitation services in rural and remote Australia performed well at delivering tailored care and engaging in community consultation.These services must urgently implement strategies to enhance community ownership of solutions and participatory governance.Services must place a greater focus on explicit strategies to integrate and coordinate across services and professions, and to create an enabling environment, to deliver people-centred care.The World Health Organisation Integrated People-Centred Health Services framework provides an important roadmap to improving service delivery in rural and remote Australian communities.

Echocardiographic Screening Detects a Significant Burden of Rheumatic Heart Disease in Australian Torres Strait Islander Children and Missed Opportunities for its Prevention.

Rheumatic heart disease (RHD) is almost entirely preventable, but its incidence in indigenous Australians remains one of the highest in the world. A community-based echocardiogram screening program of 862 Torres Strait Islander children identified 25 (2.9%) new cases of RHD. Among these 25 children, 5/7 (71%) prior acute rheumatic fever presentations had not been recognized. There was a history of microbiologically confirmed group A Streptococcus infection in 17/25 (68%) children with RHD compared with 9/25 (36%) controls (odds ratio [OR] [95% CI]: 3.78 [1.17-12.19], P = 0.03). This was more likely to be a skin swab (16/25 [64%] cases versus 6/25 [24%] controls) than a throat swab (1/25 [4%] cases versus 3/25 [12%] controls) (OR [95% CI]: 5.33 [1.51-18.90] [P = 0.01]), supporting a role for skin infection in RHD pathogenesis. Household crowding and unemployment were common in the cohort, emphasizing the need for prioritizing strategies that address the social determinants of health.

Coming to town: Reaching agreement on a thorny issue.

OBJECTIVE: To describe the process of gaining consensus across regional organisations in formulating measures to improve coordination of care for people from remote Far North Queensland communities coming to town (Cairns) to access health care. DESIGN: This is a descriptive study that includes survey data from workshop participants. SETTING: Coming to town for health care poses great challenges, especially for Indigenous Australians from remote communities. Numerous organisations are involved, communications are fragmented and there is no central coordinating body. The system frequently fails to deliver necessary services. This generates preventable cost burdens through missed flights, missed appointments, missed treatment opportunities and extra administration. Workshop organisers invited key service providers from across Far North Queensland. MAIN OUTCOME MEASURES: Using real-case scenarios, the task was to identify and prioritise the central issues and explore ways to address them. Participants jointly crafted the final recommendations and also posted suggestions on a 'wish-list' board. A participant assessment survey was conducted at the end of the workshop, followed by an online survey 6 weeks later. RESULTS: There were 32 participants. The concluding survey indicated the workshop was well received and people valued the collaboration. There were six primary recommendations plus numerous wish-list suggestions. The best-supported recommendation was establishment of a coming to town Hub with a local coordinating team and community-based representatives. CONCLUSION: Implementation of the workshop recommendations and support of all key service providers should be culturally acceptable and resource-efficient with better health outcomes for travellers, their families and communities.

How primary health care staff working in rural and remote areas access skill development and expertise to support health promotion practice.

INTRODUCTION: Health promotion is a key component of comprehensive primary health care. Health promotion approaches complement healthcare management by enabling individuals to increase control over their health. Many primary healthcare staff have a role to play in health promotion practice, but their ability to integrate health promotion into practice is influenced by their previous training and experience. For primary healthcare staff working in rural and remote locations, access to professional development can be limited by what is locally available and prohibitive in terms of cost for travel and accommodation. This study provides insight into how staff at a large north Queensland Aboriginal community controlled health service access skill development and health promotion expertise to support their work. METHODS: A qualitative exploratory study was conducted. Small group and individual semi-structured interviews were conducted with staff at Apunipima Cape York Health Council (n=9). A purposive sampling method was used to recruit participants from a number of primary healthcare teams that were more likely to be involved in health promotion work. Both on-the-ground staff and managers were interviewed. All participants were asked how they access skill development and expertise in health promotion practice and what approaches they prefer for ongoing health promotion support. The interviews were transcribed verbatim and analysed thematically. RESULTS: All participants valued access to skill development, advice and support that would assist their health promotion practice. Skill development and expertise in health promotion was accessed from a variety of sources: conferences, workshops, mentoring or shared learning from internal and external colleagues, and access to online information and resources. With limited funds and limited access to professional development locally, participants fostered external and internal organisational relationships to seek in-kind advice and support. Irrespective of where the advice came from, it needed to be applicable to work with Aboriginal and Torres Strait Islander remote communities. CONCLUSIONS: To improve health outcomes in rural and remote communities, the focus on health promotion and prevention approaches must be strengthened. Primary healthcare staff require ongoing access to health promotion skill development and expertise to increase their capacity to deliver comprehensive primary health care. Practice-based evidence from staff working in the field provides a greater understanding of how skill development and advice are accessed. Many of these strategies can be formalised through organisational plans and systems, which would ensure that a skilled health promotion workforce is sustained.

Process evaluation of a pilot evidence-based Polycystic Ovary Syndrome clinic in the Torres Strait.

OBJECTIVE: Polycystic ovary syndrome (PCOS) is a chronic endocrine syndrome in reproductive-aged women which is very common among Aboriginal and Torres Strait Islander women. The objective of this study was to conduct a process evaluation of a pilot clinic on Thursday Island which aimed to provide a comprehensive evidence-based service for women with PCOS throughout the Torres Strait. DESIGN: Mixed-method evaluation at 12 months comprising a medical record audit, semi-structured interviews and focus group discussions. SETTING: Primary care. PARTICIPANTS: Audit of n = 11 clinics (n = 36 women), qualitative semi-structured interviews with n = 8 clinicians and focus group discussions with n = 8 women. MAIN OUTCOME MEASURES: (i) Fidelity to evidence-based guidelines, (ii) barriers and enablers to women using the service, (iii) the ability to meet the needs of women and the community. RESULTS: The clinic was largely successful in providing evidence-based care with up to 78% of women receiving recommended cardiometabolic screening, 100% emotional screening and 89% lifestyle management despite the remoteness of the clinic and limited financial and human resources. Health care providers report sustainability of the clinic will be dependent on factors including staffing, administrative support and inclusion of Aboriginal and Torres Strait Islander health workers. CONCLUSION: While the clinic has been largely successful there are areas identified for potential improvement and to facilitate sustainability which should be considered before up-scaling this model to a national level. These include systems, administrative and staffing support, engaging with other community services to facilitate lifestyle changes and ongoing engagement and upskilling of Aboriginal and Torres Strait Islander health care providers.