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.

The Circulation of Blood and Care: Value and Kidney Disease Amongst Yolŋu in Northern Australia.

In health care and care scholarship, care is often cast as a gift that exploits caregivers, or generates social debts and inequalities among people who require it. I broaden understandings of how care acquires and distributes value through ethnographic engagement with Yolŋu (an Australian First Nations people) with lived experience of kidney disease. I expand Baldassar and Merla's concept of the circulation of care to argue that value, like blood, circulates through caregiving practices of generalized reciprocity without transferring worth between caregivers and receivers. Here, the gift of care is neither agonistic or purely altruistic, entangling individual and collective value.

Community-based social care models for indigenous people with disability: A scoping review of scholarly and policy literature.

Disability is experienced and understood by Indigenous people internationally in distinct ways from other populations, requiring different approaches in disability services. Furthermore, Indigenous populations access disability services at low rates. In response, policymakers, service providers and Indigenous organisations have developed specific models of care for Indigenous people with disability. Social care services, comprising personal care, transport and social activities, can support Indigenous people with disability to live with their families and in their communities. However, little is known about the range of social care models for Indigenous people with disability. To inform policy and practice, we conducted a scoping review of community-based models of social care designed to meet the needs of Indigenous peoples in Australia, Aotearoa New Zealand, Canada and the United States. Our methods were informed by best practice scoping review principles and a collaborative approach that centred Indigenous voices within research appraisal and project governance processes. Literature searches (conducted March-April 2021) yielded 25 results reporting on 10 models of care. We identified two over-arching themes (funding and governance arrangements; service delivery design) that encompass nine key characteristics of the included models. Our analysis shows promising practice in contextually relevant place-based social activity programs, support and remuneration for family carers and workforce strategies that integrate Indigenous staff roles with kinship relationships and social roles. While more research and evaluation are needed, disability funding bodies and service systems that facilitate these areas of promising practice may improve the accessibility of social care for Indigenous peoples.

Towards the decolonisation of disability: A systematic review of disability conceptualisations, practices and experiences of First Nations people of Australia.

In many settler-colonial countries, Indigenous people do not access disability services at rates commensurate with disability prevalence. Existing research suggests that services often do not reflect Indigenous values and social practices, impacting on accessibility. Furthermore, disability services have historically been implicated in processes of colonisation. There is an urgent need to decolonise disability services. Understanding Indigenous knowledge and experience of disability is a necessary step towards achieving this. We systematically reviewed the disability conceptualisations, practices and experiences of First Nations peoples of Australia. Twelve studies met inclusion criteria. There was a consensus among these studies that Western constructs of disability do not resonate with many First Nations people across Australia. The studies reported that many First Nations people conceptualise most disabilities as unremarkable conditions that reflect the normal range of human diversity, although some conditions may be associated with social stigma. Inclusive attitudes and practices of caregiving in First Nations families facilitate the participation of First Nations people with disabilities in family and community life. However, ableism and racism in broader society combine to exclude many First Nations peoples with disabilities from public spaces and from labour markets. Disability services regularly fail to reflect First Nations values and social practices, and can lead to further disempowerment and marginalisation due to diagnostic processes; displacement from country and communities; gendered discrimination; and poor relationships with service providers. We argue that intersectional experiences of colonialism, racism, ableism and sexism, particularly in disability services, can lead to the marginalisation of First Nations participants and families. The decolonisation of disability services requires services to embrace diverse First Nations values and practices associated with human capability, social participation and caregiving. Decolonising disability services also necessitates First Nations control of the governance of disability services and reform across service, organisational, systemic and conceptual levels.

Evaluation of a three-phase implementation program in enhancing e-mental health adoption within Indigenous primary healthcare organisations.

BACKGROUND: A three-phase implementation program was carried out to support Indigenous primary healthcare organisations in Australia to integrate e-mental health approaches into the day-to-day practice. The present study aimed to evaluate the process and the effectiveness of the program. METHODS: A concurrent triangulation design was employed to collect and compare quantitative and qualitative data from organisations that participated in the implementation program (case studies) to those that participated in training only (non-case studies). Quantitative methods, i.e., t-tests and descriptive statistics, were used to measure outcomes relating to the frequency of e-mental health usage and levels of organisational readiness. Qualitative data were analysed separately, using theoretical thematic analysis, to gain an in depth understanding of the implementation process. The findings were integrated and interpreted within the implementation science literature. RESULTS: The case studies evidenced greater use of e-mental health approaches than the non-case studies. They also demonstrated increased organisational readiness over the course of the implementation program. The program helped organisations to work and improve on essential aspects within the organisation so that they better supported e-mental health adoption. The key areas addressed were Information Technology resources and infrastructure, leadership and support, policy and protocols around e-mental health utilisation and its integration into practice. CONCLUSIONS: By addressing and improving essential aspects relating to e-mental health implementation, the program helped organisations to increase organisational readiness and enhance uptake of e-mental health approaches.

Evaluation of Electronic Mental Health Implementation in Northern Territory Services Using the Integrated "Promoting Action on Research Implementation in Health Services" Framework: Qualitative Study.

BACKGROUND: Electronic mental health is a promising strategy to bridge the treatment gap in mental health care. Training workshops have been delivered to service providers working with Aboriginal and Torres Strait Islander people at a primary health care level to raise awareness and knowledge of electronic mental health approaches. OBJECTIVE: This study aimed to understand service providers' perspectives and experiences of electronic mental health adoption. More specifically, it aimed to use the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to further identify and understand how different factors facilitate or impede electronic mental health uptake within primary health care settings providing services to Aboriginal and Torres Strait Islander people. METHODS: Qualitative interviews were conducted with 57 service providers working with Aboriginal and Torres Strait Islander people, who had undergone electronic mental health training workshops. RESULTS: Several factors related to innovation (electronic mental health approach), recipients (service providers as an individual and as a team), and context (local, organizational, and external contexts) were found to influence electronic mental health uptake. Particularly, organizational readiness, in terms of information technology resources and infrastructure, policies, workforce and culture, and processes to mandate electronic mental health use, were found to be significant impediments to electronic mental health utilization. These findings led to the development of a three-phase implementation strategy that aims to enhance electronic mental health adoption by addressing organizational readiness before and post electronic mental health training. CONCLUSIONS: The i-PARIHS provides a useful determinant framework that deepens our understanding of how different factors impede or facilitate electronic mental health adoption in this setting. This insight was used to develop a practical and comprehensive implementation strategy to enhance the utilization of electronic mental health approaches within primary health care settings, involving three phases: pretraining consultations, training workshops, and post-training follow-up support.

Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease.

BACKGROUND: Chronic kidney disease is an increasingly common health problem for Aboriginal and Torres Strait Islander people. It is associated with multiple concurrent psychosocial stressors frequently resulting in negative impacts on emotional and social wellbeing. There is need for well-designed intervention studies to provide evidence of effective treatment for comorbid depression or other mental illness in this setting. Attention to early phase piloting and development work is recommended when testing complex interventions. This paper documents feasibility testing and adaptation of an existing culturally responsive brief wellbeing intervention, the Stay Strong App, and three commonly used wellbeing outcome measures, in preparation for a clinical trial testing effectiveness of the intervention. METHODS: The Stay Strong App, which has not been used in the setting of Chronic Kidney Disease before, is reviewed and adapted for people with comorbid wellbeing concerns through expert consensus between research team and an Expert Panel. The outcome measures (Kessler 10, Patient Health Questionnaire 9, and EuroQoL) are valid, reliable, and commonly used tools to assess various aspects of wellbeing, which have also not been used in this context before. Feasibility and acceptability are examined and developed through 3 stages: Pilot testing in a purposive sample of five haemodialysis patients and carers; translation of outcome measures through collaboration between the Aboriginal Interpreter Service, Aboriginal and Torres Strait Islander research officers and the research team; and conversion of translated outcome measures to electronic format. RESULTS: Research team and expert panel consensus led to adaptation of the Stay Strong App for renal patients through selective revision of words and images. Pilot testing identified challenges in delivery of the wellbeing measures leading to word changes and additional prompts, integration of audio translations in 11 local Indigenous languages within an interactive Outcome Measures App, and related research protocol changes. CONCLUSION: Modelling the complex intervention prior to full-scale testing provided important information about the design of both the outcome measures and the intervention. These changes are likely to better support success in conduct of the clinical trial and future implementation of the intervention in clinical settings.

E-Mental Health Innovations for Aboriginal and Torres Strait Islander Australians: A Qualitative Study of Implementation Needs in Health Services.

BACKGROUND: Electronic mental health (e-mental health) interventions offer effective, easily accessible, and cost effective treatment and support for mental illness and well-being concerns. However, e-mental health approaches have not been well utilized by health services to date and little is known about their implementation in practice, particularly in diverse contexts and communities. OBJECTIVE: This study aims to understand stakeholder perspectives on the requirements for implementing e-mental health approaches in regional and remote health services for Indigenous Australians. METHODS: Qualitative interviews were conducted with 32 managers, directors, chief executive officers (CEOs), and senior practitioners of mental health, well-being, alcohol and other drug and chronic disease services. RESULTS: The implementation of e-mental health approaches in this context is likely to be influenced by characteristics related to the adopter (practitioner skill and knowledge, client characteristics, communication barriers), the innovation (engaging and supportive approach, culturally appropriate design, evidence base, data capture, professional development opportunities), and organizational systems (innovation-systems fit, implementation planning, investment). CONCLUSIONS: There is potential for e-mental health approaches to address mental illness and poor social and emotional well-being amongst Indigenous people and to advance their quality of care. Health service stakeholders reported that e-mental health interventions are likely to be most effective when used to support or extend existing health services, including elements of client-driven and practitioner-supported use. Potential solutions to obstacles for integration of e-mental health approaches into practice were proposed including practitioner training, appropriate tool design using a consultative approach, internal organizational directives and support structures, adaptations to existing systems and policies, implementation planning and organizational and government investment.

Evaluation of a culturally adapted training course in Indigenous e-mental health.

OBJECTIVE: To report the impact of the Indigenous e-mental health training course 'Yarning about Indigenous Mental Health using the AIMhi Stay Strong App'. METHOD: Participants were trained in e-mental health and the use of one of the first culturally adapted e-mental health interventions - The AIMhi Stay Strong App. Between October 2013 and December 2014, 138 participants completed the 'Yarning about Indigenous Mental Health using the AIMhi Stay Strong App' training course and 130 completed pre- and post-training questionnaires to explore knowledge and confidence in a number of areas trained. RESULTS: Paired t-tests showed significant improvements across all measures of skill and knowledge except for confidence in using computers. CONCLUSIONS: E-mental health is a relatively new development that may contribute to improved access to mental health services for rural and remote Indigenous Australians, particularly where such tools are culturally adapted. Whilst current knowledge and use of e-mental health tools in this group of Northern Territory service providers was limited, perceived knowledge and confidence in use was significantly improved following training.

Monitoring and assessing the quality of care for youth: developing an audit tool using an expert consensus approach.

BACKGROUND: The mental health needs of young people are often inadequately met by health services. Quality improvement approaches provide a framework for measuring, assessing and improving the quality of healthcare. However, a lack of performance standards and measurement tools are an impediment to their implementation. This paper reports on the initial stages of development of a clinical audit tool for assessing the quality of primary healthcare for Australian Indigenous youth aged 12-24 including mental health services provided within primary care. METHODS: Audit items were determined through review of relevant guidelines, expert reference group consensus opinion and specific inclusion criteria. Pilot testing was undertaken at four Indigenous primary healthcare services. A focus group discussion involving five staff from a health service participating in pilot testing explored user experiences of the tool. RESULTS: Audit items comprise key measures of processes and outcomes of care for Indigenous youth, as determined by the expert reference group. Gaps and conflicts in relevant guidelines and a lack of agreed performance indicators necessitated a tool development process that relied heavily on expert reference group advice and audit item inclusion criteria. Pilot testing and user feedback highlighted the importance of feasibility and context-specific considerations in tool development and design. CONCLUSIONS: The youth health audit tool provides a first step in monitoring, assessing and improving the way Indigenous primary healthcare services engage with and respond to the needs of youth. Our approach offers a way forward for further development of quality measures in the absence of clearly articulated standards of care.