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.

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 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.

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.

Protocol Paper: Conducting Life History Interviews to Explore the Journeys of People with Disability from Syrian and Iraqi Refugee Backgrounds Settling in Australia.

This paper outlines a research protocol to be undertaken with people with disability from Syrian and Iraqi refugee backgrounds settling in Australia. Since 2012, the numbers of people with disability arriving from these countries has increased with limited understanding about the impact of their refugee journeys on their settlement. The aim of this small-scale exploratory study is to learn about the journeys made by people with disability from Syrian and Iraqi refugee backgrounds from their countries of origin, through transit countries, to Australia in order to understand the impact of these journeys on inclusion and participation in Australian society. This participatory action research study employs a bilingual co-researcher with disability from a Syrian background to conduct life history interviews with up to five participants. Participants will recount their journeys with a focus on the impact of their disability on this experience. The study design is informed by BenEzer and Zetter's 2014 seminal paper on the importance of the refugee journey to settlement. This study has the potential to foreground the voices and experiences of people with disability from refugee backgrounds who are often absent, silenced or excluded in research and, in so doing, hopefully impact Australian refugee policy.

Environmental and systemic challenges to delivering services for Aboriginal adults with a disability in Central Australia.

PURPOSE: This two-year (2016-2018) study aimed to identify what a good life is for Aboriginal people with disability in remote Central Australia and how service providers can support them to achieve a good life. This paper presents the findings that relate to barriers to delivering services for Aboriginal people with disability. METHODS: In-depth interviews and focus groups were held with Aboriginal people with disability and their carers aged at least 18 years from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Lands and community organisations providing services there. The data were analysed using thematic analysis. RESULTS: There were 109 participants, of whom 47 were workers in service provider organisations and 62 were Aboriginal people. From the data, barriers to delivering services to support Aboriginal people to live a good life and solutions to overcome the barriers, were identified and described under the headings of environmental barriers and systemic issues. CONCLUSIONS: We discuss the policy implications of these findings with regard to addressing Indigenous disadvantage and how governments, service providers, communities, and Aboriginal people with disability and their families can work in partnership to address these barriers.Implications for RehabilitationIndigenous people with disability living in remote and very remote communities experience significant access and equity barriers to culturally responsive services that enable them to live a socially and culturally engaged life.Localised government and service provider disability policy approaches in Indigenous communities need to focus on both environmental and systemic issues.Greater investment in local remote communities is required to build the capacity of Indigenous families to support Aboriginal people with a disability to live a culturally and socially included life.

Women and Stigma: A Protocol for Understanding Intersections of Experience through Body Mapping.

This paper outlines a research and dissemination protocol to be undertaken with specific groups of marginalised women in Australia. Women impacted by significant mental distress, disability, or refugee status are among society's most vulnerable and disenfranchised groups. They can experience significant social exclusion, marginalisation and stigma, associated with reduced help seeking, deprivation of dignity and human rights, and threats to health, well-being and quality of life. Previous research has assessed the experiences of discrete groups of women but has to date failed to consider mental health-refugee-disability intersections and overlaps in experience. Using body mapping, this research applies an intersectional approach to identify how women impacted by significant mental distress, disability, and refugee status negotiate stigma and marginalisation. Findings on strategies to cope with, negotiate and resist stigmatised identities will inform health policy and yield targeted interventions informed by much-needed insights on women's embodied experience of stigma. The women's body maps will be exhibited publicly as part of an integrated knowledge translation strategy. The aim is to promote and increase sensitivity and empathy among practitioners and policy makers, strengthening the basis for social policy deliberation.

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.

'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.

"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.

Choice and Control Within Family Relationships: The Lived Experience of Adults With Intellectual Disability.

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

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.

Need for an Australian Indigenous disability workforce strategy: review of the literature.

PURPOSE: To identify approaches for developing workforce capacity to deliver the National Disability Insurance Scheme (NDIS) to Indigenous people with disability in Australian rural and remote communities. METHOD: A narrative review of peer-reviewed and gray literature was undertaken. Searches of electronic databases and websites of key government and non-government organizations were used to supplement the authors' knowledge of literature that (a) focused on Indigenous peoples in Australia or other countries; (b) referred to people with disability; (c) considered rural/remote settings; (d) recommended workforce strategies; and (e) was published in English between 2004 and 2014. Recommended workforce strategies in each publication were summarized in a narrative synthesis. RESULTS: Six peer-reviewed articles and 12 gray publications met inclusion criteria. Three broad categories of workforce strategies were identified: (a) community-based rehabilitation (CBR) and community-centered approaches; (b) cultural training for all workers; and (c) development of an Indigenous disability workforce. CONCLUSION: An Indigenous disability workforce strategy based on community-centered principles and incorporating cultural training and Indigenous disability workforce development may help to ensure that Indigenous people with a disability in rural and remote communities benefit from current disability sector reforms. Indigenous workforce development requires strategies to attract and retain Aboriginal workers. Implications for Rehabilitation Indigenous people with disability living in rural and remote areas experience significant access and equity barriers to culturally appropriate supports and services that enable them to live independent, socially inclusive lives. A workforce strategy based on community-centered principles has potential for ensuring that the disability services sector meets the rehabilitation needs of Aboriginal people with disability living in rural and remote areas. Cultural training and development of an Indigenous disability workforce may help to ensure a culturally safe disability services sector and workforce.

Access to therapy services for people with disability in rural Australia: a carers' perspective.

In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban-dwelling counterparts. This cross-sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1-69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers' perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.

Private Practice Disability Therapy Workforce in Rural New South Wales, Australia.

Despite an increasing demand for therapy services, there is a shortage of therapists in rural areas. We describe the existing private therapy workforce in rural western New South Wales (NSW), Australia. A cross-sectional design study, using an online survey, was conducted with occupational and physiotherapists, speech pathologists, and psychologists working in private practice in western NSW. Forty-one private therapists completed the survey. The average years of qualification was 19; 51% worked part-time. Two-thirds (68%) indicated they had adequate access to professional development opportunities. Sixty-four percent reported intending to stay in their job for 12 months. Most (95%) reported high levels of job satisfaction. Respondents had worked in western NSW for a median of 17 yrs. Sixty-eight percent described opportunities for social interaction as very good. Sixty-six percent grew up in rural areas. All respondents agreed that they loved the rural lifestyle. The results portray an experienced, stable, flexible, and highly satisfied professional group. With the current changes in policies within the disability sector, it is important to maximise these features of private therapy in order to contribute to the rural workforce and increase access to the range of supports available for people with disability.

The development of a framework for high-quality, sustainable and accessible rural private therapy under the Australian National Disability Insurance Scheme.

PURPOSE: The Australian National Disability Insurance Scheme (NDIS) will provide people with individual funding with which to purchase services such as therapy from private providers. This study developed a framework to support rural private therapists to meet the anticipated increase in demand. METHOD: The study consisted of three stages utilizing focus groups, interviews and an online expert panel. Participants included private therapists delivering services in rural New South Wales (n = 28), disability service users (n = 9) and key representatives from a range of relevant consumer and service organizations (n = 16). We conducted a thematic analysis of focus groups and interview data and developed a draft framework which was subsequently refined based on feedback from stakeholders. RESULTS: The framework highlights the need for a 'rural-proofed' policy context in which service users, therapists and communities engage collaboratively in a therapy pathway. This collaborative engagement is supported by enablers, including networks, resources and processes which are influenced by the drivers of time, cost, opportunity and motivation. CONCLUSIONS: The framework identifies factors that will facilitate delivery of high-quality, sustainable, individualized private therapy services for people with a disability in rural Australia under the NDIS and emphasizes the need to reconceptualize the nature of private therapy service delivery. Implications for Rehabilitation Rural private therapists need upskilling to work with individuals with disability who have individual funding such as that provided by the Australian National Disability Insurance Scheme. Therapists working in rural communities need to consider alternative ways of delivering therapy to individuals with disability beyond the traditional one-on-one therapy models. Rural private therapists need support to work collaboratively with individuals with disability and the local community. Rural private therapists should harness locally available and broader networks, resources and processes to meet the needs and goals of individuals with disability.

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.