The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review.

BACKGROUND: Australia's National Disability Insurance Scheme (NDIS) was launched in 2013 to provide financial support packages for people with disability to purchase supports and services to enhance independence. People with disability are required to develop a plan with the National Disability Insurance Agency (NDIA), the government department responsible for managing the NDIS. This scoping review aims to ascertain the level of research into people's experience of the NDIS planning process in these geographic areas. METHODOLOGY: Research publication databases were searched using a specific search string to identify research about people with disability and their families/carer's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications focused on Aboriginal and Torres Strait Islander people were additionally appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications' contents was undertaken to ascertain people with disabilities and carers experience of the NDIS planning process. RESULTS: Ten (N = 10) research papers were found that met the inclusion criteria. Two papers were policy reviews and reported on the improvements of the NDIS planning process since its conception. The analysis found the research archive focused on five themes: (1) healthcare workforce and NDIA staff; (2) NDIS package holders and carers lack of awareness of the NDIS; (3) cultural/socio-economic barriers; (4) travel funding; and (5) emotional burden of the NDIS planning process. CONCLUSION: There are limited papers available that explore people's experiences of the NDIS planning process in regional, rural and remote regions of Australia. This systematic review illuminates the difficulties, barriers and concerns of people with disability and their carers about the planning process.

Disability workforce and the NDIS planning process in regional, rural and remote regions of Australia: Scoping review.

BACKGROUND: The Australian geographically rural and remote disability workforce has historically demonstrated difficulties to keep up with the demand for quality services and supports for people with disability. In 2013, the National Disability Insurance Scheme (NDIS) was launched to provide individualised disability support packages to meet people's needs. To receive funding, people with disability are required to develop a NDIS plan. That plan is then funded by the National Disability Insurance Agency (NDIA), the government agency responsible for managing the NDIS. Although the NDIS has been operating for almost 10 years, there is limited research into the planning experiences of the workforce in regional, rural and remote regions of Australia. This review aims to ascertain the level of scholarly investigation into workers' experiences of NDIS planning. METHODOLOGY: Research publication databases were searched using a specific search string to identify publications that included reference to the workforce's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications that focused on those working with Aboriginal and Torres Strait Islander people were also appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications was undertaken to ascertain disability and health workforce experiences of the NDIS planning process. RESULTS: Seven papers met the selection criteria. Two papers were policy reviews and reported the improvements of the NDIS planning process since its inception. These studies reported four reoccurring themes: (1) cultural/socioeconomic and geographical factors; (2) administrative burden and bureaucracy; (3) values, culture and geography; and (4) burden on allied health workers. CONCLUSION: The NDIS planning process has developed and progressed since its rollout in 2013. There are limited research papers available that describe the workforce's experience of the planning process in regional, rural and remote regions. More research in this area is needed to identify the experiences of the disability workforce in relation to the NDIS planning process.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

"Living the life I want": A framework for planning engagement with people with intellectual disability and complex support needs.

BACKGROUND: Self-determination involves autonomy, agency, choice and control. This study investigated how these aspects of self-determination relate to engaging people with intellectual disability and complex support needs in setting goals and making plans. METHOD: Body mapping was used to understand the planning experiences of 30 adults with intellectual disability and complex support needs. Each participant created two body maps using a guided group-based process. Visual and text data were thematically analysed and a framework for planning engagement developed. RESULTS: The framework identifies the centrality of having a well-developed sense of self which includes insight, motivation and agency, and which is shaped by contextual barriers and facilitators and influenced by helpful and unhelpful support. CONCLUSIONS: A well-developed sense of self and ability to harness resources and people is fundamental to the ability of individuals with intellectual disability and complex support needs articulating goals, identifying aspirations, and attaining valued outcomes.

'I don't feel like I'm in this on my own': Peer support for mothers of children with intellectual disability and challenging behaviour.

This article reports on the peer support experiences of mothers with a son or daughter with intellectual disability and challenging behaviour. Engagement in parent peer support programs can improve family quality of life and may have multifaceted benefits at the interpersonal, intra-individual self-change and sociopolitical levels. Thirteen mothers were interviewed about their experiences of participating in a parent peer support program. Thematic analysis focused on the process elements of the program that contributed to its effectiveness in providing support to parents. There were three process-related themes: the role of a paid coordinator, diversity of engagement strategies and matching of peer support partners. Mothers appreciated the opportunities provided to engage in a range of strategies tailored to individual preferences, time and capacity constraints, supported by the paid coordinator. One-to-one peer support proved difficult to sustain given the challenges mothers faced in their day-to-day lives.

Unpacking the complexity of planning with persons with cognitive disability and complex support needs.

BACKGROUND: Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known. METHOD: A qualitative study was conducted to explore the barriers and facilitators to planning with people with cognitive disability and complex support needs. Focus groups were held with 99 planning practitioners across metropolitan and regional locations in New South Wales, Australia. RESULTS: Thematic analysis showed planners need to build a partnership based on mutual trust and respect with a person with complex support needs and harness a range of skills to respond to individual support needs, learning capacity, systemic hurdles and life challenges. CONCLUSIONS: Planner skills can be used to address barriers to planning for people with cognitive disability and complex support needs. Gaining skills took professional support and personal commitment.

Perspectives of rural carers on benefits and barriers of receiving occupational therapy via Information and Communication Technologies.

INTRODUCTION: People with a disability living in rural areas commonly experience difficulty in accessing therapy services. Information and Communication Technologies (ICT) may have the potential to provide occupational therapy services remotely through two-way visual interactions. The aim of this qualitative study was to understand the perspectives of carers of a person with a disability living in rural New South Wales (NSW) on the use of ICT for occupational therapy service delivery. METHODS: Individual semi-structured telephone interviews were conducted with 11 carers of persons with a disability living in rural NSW. Participants were asked about their use of technology, therapy experiences and their attitudes towards using ICT to receive occupational therapy for their son/daughter. Data were analysed via constant comparison and thematic analysis. RESULTS: Participants were willing to use ICT to enhance their current access to therapy based on their in-depth knowledge of their son or daughter and their prior experiences with therapy and technology. For ICT to work for occupational therapy, participants identified the need for support and access prior to, during and between ICT sessions. CONCLUSION: From the carers' perspectives, ICT has the potential to increase access to occupational therapy services for people with a disability who live in rural NSW. Occupational therapists could benefit from eliciting the experiences, knowledge and willingness of rural carers to deliver therapy via ICT, thereby supplementing and enhancing in-person service delivery.

Should I stay or should I go? Exploring the job preferences of allied health professionals working with people with disability in rural Australia.

INTRODUCTION: The uneven distribution of allied health professionals (AHPs) in rural and remote Australia and other countries is well documented. In Australia, like elsewhere, service delivery to rural and remote communities is complicated because relatively small numbers of clients are dispersed over large geographic areas. This uneven distribution of AHPs impacts significantly on the provision of services particularly in areas of special need such as mental health, aged care and disability services. OBJECTIVE: This study aimed to determine the relative importance that AHPs (physiotherapists, occupational therapists, speech pathologists and psychologists - "therapists") living in a rural area of Australia and working with people with disability, place on different job characteristics and how these may affect their retention. METHODS: A cross-sectional survey was conducted using an online questionnaire distributed to AHPs working with people with disability in a rural area of Australia over a 3-month period. Information was sought about various aspects of the AHPs' current job, and their workforce preferences were explored using a best-worst scaling discrete choice experiment (BWSDCE). Conditional logistic and latent class regression models were used to determine AHPs' relative preferences for six different job attributes. RESULTS: One hundred ninety-nine AHPs completed the survey; response rate was 51 %. Of those, 165 completed the BWSDCE task. For this group of AHPs, "high autonomy of practice" is the most valued attribute level, followed by "travel BWSDCE arrangements: one or less nights away per month", "travel arrangements: two or three nights away per month" and "adequate access to professional development". On the other hand, the least valued attribute levels were "travel arrangements: four or more nights per month", "limited autonomy of practice" and "minimal access to professional development". Except for "some job flexibility", all other attributes had a statistical influence on AHPs' job preference. Preferences differed according to age, marital status and having dependent children. CONCLUSIONS: This study allowed the identification of factors that contribute to AHPs' employment decisions about staying and working in a rural area. This information can improve job designs in rural areas to increase retention.

Factors affecting retention of allied health professionals working with people with disability in rural New South Wales, Australia: discrete choice experiment questionnaire development.

OBJECTIVE: This paper describes the development of a discrete choice experiment (DCE) questionnaire to identify the factors (attributes) that allied health professionals (AHPs) working with people with disability identify as important to encouraging them to remain practising in rural areas. METHODS: Focus groups and semi-structured interviews were conducted with 97 purposively selected service providers working with people with disability in rural New South Wales, Australia. Focus groups and interviews were digitally recorded, transcribed, and analysed using a modified grounded theory approach involving thematic analysis and constant comparison. RESULTS: Six attributes that may influence AHPs working with people with disability in rural areas to continue to do so were inductively identified: travel arrangements, work flexibility, professional support, professional development, remuneration, and autonomy of practice. The qualitative research information was combined with a policy review to define these retention factors and ensure that they are amenable to policy changes. CONCLUSION: The use of various qualitative research methods allowed the development of a policy-relevant DCE questionnaire that was grounded in the experience of the target population (AHPs).

Who are they and what do they do? Profile of allied health professionals working with people with disabilities in rural and remote New South Wales.

OBJECTIVE: To explore the characteristics of allied health professionals (AHPs) working with people with disabilities in western New South Wales (NSW). DESIGN: A cross-sectional survey was conducted using an online questionnaire. SETTING: Rural western NSW. PARTICIPANTS: AHPs including physiotherapists, speech pathologists, occupational therapists and psychologists ('therapists') working with people with disabilities. MAIN OUTCOME MEASURE: AHPs characteristics. RESULTS: The majority of respondents were women (94%), with a mean age of 39 years; average time since qualification was 14 years; mean years in current position was 6. Most worked with people with a lifelong disability. Two thirds reported that family ties kept them in rural areas; 71% grew up in a rural/remote area. Most participants (94%) enjoyed the rural lifestyle, and 84% reported opportunities for social interaction as good or very good. Participants with dependent children were less likely to cease working in western NSW within 5 years than those without dependent children (P < 0.05). CONCLUSIONS: The characteristics of therapists working with people with disabilities in rural NSW were identified. Overall working, but also social conditions and community attachment were important for this group. Understanding the workforce will contribute to policy development to meet increasing demands for therapy services.

Identifying priorities for Australian disability research using Q methodology.

BACKGROUND: Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability. OBJECTIVE: To explore and inform disability research for Australia, including perspectives of people with disability. METHODS: As part of a research program, we used Q methodology to explore "what should guide the Australian research agenda?" People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from -4 to +4, according to "Which topics should guide disability research the least to the most?" Factor analysis revealed four distinct but interrelated participant viewpoints. RESULTS: 52 participants (65 % female, aged 18-65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 - design and delivery of services across the lifespan. Viewpoint 2 - understanding the diverse experience of those with disability. Viewpoint 3 - designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 - addressing mental health for those with disability no matter where they live. CONCLUSION: These viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

Barriers and Enablers of Service Access and Utilization for Children and Adolescents With Attention Deficit Hyperactivity Disorder: A Systematic Review.

OBJECTIVE: To update a systematic review of the literature on the barriers and enablers of service access and utilization for children and adolescents with a diagnosis, or symptoms of attention deficit/hyperactivity disorder (ADHD), from the perspective of caregivers, clinicians, and teachers. METHODS: Five databases were searched for peer-reviewed literature published from May 2012 to March 2023. Two independent reviewers completed a two-stage screening process and quality assessment. RESULTS: Of 4,523 search results, 30 studies were included. Five main themes were generated: 1) Awareness of ADHD, 2) Stigma, 3) Parental choice and partnerships, 4) Education services as an integral component, 5) Referrals, waiting times, and logistics. More than half of the studies reported poor acknowledgement, expertise of ADHD, and stigma. CONCLUSION: Findings highlight the need for ongoing ADHD education for all involved and policy changes to service delivery systems to increase the availability of health providers with specialist ADHD expertise.

Barriers to the use of Information and Communication Technology by occupational therapists working in a rural area of New South Wales, Australia.

BACKGROUND/AIM: This qualitative study formed part of a large-scale, multi-phase study into the delivery of therapy services to people with a disability, living in one rural area of New South Wales, Australia. The study's purpose was to identify the impact of Information and Communication Technology on the workforce practices of occupational therapists' working in a rural area of New South Wales. METHODS: Individual semi-structured telephone interviews were conducted with 13 occupational therapists working in disability, health and private practice in a rural area of New South Wales. Participants were asked about access to, skills and limitations of using Information and Communication Technology. A modified grounded theory approach, based on thematic analysis and constant comparison, was used to analyse the interview transcripts. RESULTS: This study found widespread use of technology by rurally based occupational therapists working in the disability sector in New South Wales. However, Information and Communication Technology was primarily used for client contact, professional development and professional networking rather than therapy provision. The study identified individual, workplace and community barriers to greater uptake of Information and Communication Technology by this group. The individual barriers included: age cohort, knowledge and personal preferences. The workplace barriers included: support and training and availability of resources. The community barriers included: infrastructure and perceptions of clients' acceptance. CONCLUSION: The potential exists for Information and Communication Technology to supplement face-to-face therapy provision, enhance access to professional development and reduce professional isolation thereby addressing the rural challenges of large distances, travel times and geographic isolation. To overcome these challenges, individual, workplace and community Information and Communication Technology barriers should be addressed concurrently.

Integrating evidence into policy and sustainable disability services delivery in western New South Wales, Australia: the 'wobbly hub and double spokes' project.

BACKGROUND: Policy that supports rural allied health service delivery is important given the shortage of services outside of Australian metropolitan centres. The shortage of allied health professionals means that rural clinicians work long hours and have little peer or service support. Service delivery to rural and remote communities is further complicated because relatively small numbers of clients are dispersed over large geographic areas. The aim of this five-year multi-stage project is to generate evidence to confirm and develop evidence-based policies and to evaluate their implementation in procedures that allow a regional allied health workforce to more expeditiously respond to disability service need in regional New South Wales, Australia. METHODS/DESIGN: The project consists of four inter-related stages that together constitute a full policy cycle. It uses mixed quantitative and qualitative methods, guided by key policy concerns such as: access, complexity, cost, distribution of benefits, timeliness, effectiveness, equity, policy consistency, and community and political acceptability. Stage 1 adopts a policy analysis approach in which existing relevant policies and related documentation will be collected and reviewed. Policy-makers and senior managers within the region and in central offices will be interviewed about issues that influence policy development and implementation. Stage 2 uses a mixed methods approach to collecting information from allied health professionals, clients, and carers. Focus groups and interviews will explore issues related to providing and receiving allied health services. Discrete Choice Experiments will elicit staff and client/carer preferences. Stage 3 synthesises Stage 1 and 2 findings with reference to the key policy issues to develop and implement policies and procedures to establish several innovative regional workforce and service provision projects. Stage 4 uses mixed methods to monitor and evaluate the implementation and impact of new or adapted policies that arise from the preceding stages. DISCUSSION: The project will provide policy makers with research evidence to support consideration of the complex balance between: (i) the equitable allocation of scarce resources; (ii) the intent of current eligibility and prioritisation policies; (iii) workforce constraints (and strengths); and (iv) the most effective, evidence-based clinical practice.

End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.

BACKGROUND: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. MATERIALS AND METHODS: Focus groups and individual interviews were conducted, guided by grounded theory methodology. RESULTS: The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner. CONCLUSIONS: End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

Issues affecting therapist workforce and service delivery in the disability sector in rural and remote New South Wales, Australia: perspectives of policy-makers, managers and senior therapists.

INTRODUCTION: The disability sector encompasses a broad range of conditions and needs, including children and adults with intellectual and developmental disabilities, people with acquired disabilities, and irreversible physical injuries. Allied health professionals (therapists), in the disability sector, work within government and funded or charitable non-government agencies, schools, communities, and private practice. This article reports the findings of a qualitative study of therapist workforce and service delivery in the disability sector in rural and remote New South Wales (NSW), Australia. The aim was to investigate issues of importance to policy-makers, managers and therapists providing services to people with disabilities in rural and remote areas. METHODS: The project gathered information via semi-structured interviews with individuals and small groups. Head office and regional office policy-makers, along with managers and senior therapists in western NSW were invited to participate. Participants included 12 policy-makers, 28 managers and 10 senior therapists from NSW government agencies and non-government organisations (NGOs) involved in providing services and support to people with disabilities in the region. Information was synthesised prior to using constant comparative analysis within and across data sets to identify issues. RESULTS: Five broad themes resonated across participants' roles, locations and service settings: (1) challenges to implementing policy in rural and remote NSW; (2) the impact of geographic distribution of workforce and clients; (3) workforce issues - recruitment, support, workloads, retention; (4) equity and access issues for rural clients; and (5) the important role of the NGO sector in rural service delivery and support. CONCLUSIONS: Although commitment to providing best practice services was universal, policy-related information transfer between organisations and employees was inconsistent. Participants raised some workforce and service delivery issues that are similar to those reported in the rural health literature but rarely in the context of allied health and disability services. Relatively recent innovations such as therapy assistants, information technology, and trans-disciplinary approaches, were raised as important service delivery considerations within the region. These and other innovations were expected to extend the coverage provided by therapists. Non-government organisations played a significant role in service delivery and support in the region. Participants recognised the need for therapists working for different organisations, in rural areas, to collaborate both in terms of peer support and service delivery to clients.

Exploring Embodied Experience via Videoconferencing: A Method for Body Mapping Online.

Faced with a series of COVID-19 related lockdowns in Australia across 2020 and 2021, and anxious about the safety of our research participants, we developed a novel approach to body mapping, an arts-based research method typically undertaken in-person. We produced a facilitated body mapping workshop hosted via an online videoconferencing platform. Workshops brought together 29 participants with disability, mental distress and/or refugee background who used body mapping to represent their embodied experiences of stigma and discrimination. These workshops generated rich data, and participants reported a high level of satisfaction with the process. In this paper we describe our novel approach to body mapping, and share practical tips for others who wish to undertake body mapping remotely. We outline strengths associated with this method: increased accessibility, enhanced connection between participants, the formation of a space to explore challenging subject matter, the production of rich data, and the creation of diverse body maps. We also discuss shortcomings and challenges which those considering the method should be aware of: increased logistical burden, demands related to space, IT difficulties, the danger of over-sharing, and diminished cohort sizes. To our knowledge, this is the first paper to report on body mapping facilitated via web-based workshops. Here, we seek to provide practical advice and useful insights for others hoping to utilise body mapping online.

The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda-Setting Study.

BACKGROUND: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. OBJECTIVE: The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda-setting exercise conducted in 2021 in Australia. METHODS: The research agenda-setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders-people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey; a consultation process undertaken through the government and nongovernment sector; and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. RESULTS: We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. CONCLUSIONS: This multi-method research agenda-setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31126.

Cumulative psychological strain and future strain in Naval personnel: is executive function the elephant in the room?

Psychological strain was measured in 592 Naval personnel at four phases using the General Health Questionnaire (GHQ-12). The GHQ-12 Likert score was summed to generate a measure of cumulative strain, which was best predicted by the Cognitive Failures Questionnaire (CFQ) score, effort-reward imbalance and a measure of organisational commitment. Point strain at phase IV was best predicted by CFQ score, whereas need for recovery was best predicted by over-commitment to work role. Susceptibility to strain, both cumulatively over 2 years and 12 months in the future appears to depend on a cognitive factor measured by the CFQ. This factor was more strongly associated with strain than with fatigue. Psychosocial stress exposure at work played a lesser role in predicting cumulative and future strain, possibly because these stressors were of an acute nature. The findings are discussed with reference to recent research on attention and anxiety and some of the practical implications are considered. STATEMENT OF RELEVANCE: There is renewed interest in intrinsic variables that predict adverse reactions to occupational stress. The paper presents evidence that self-reported cognitive failure is a vulnerability factor for future episodes of psychological strain. The paper strengthens the conclusions of a previous article and adds empirical support to recent research on the links between anxiety and attention.