Building an evidence-based multi-level system of quality disability support for adults with acquired neurological disability.

PURPOSE: People with acquired neurological disability have the right to quality disability support, yet there is still limited user insights shaping disability services. This research aimed to develop a comprehensive understanding of quality support for adults with acquired neurological disability based on lived experiences. METHODS: Using a constructivist grounded theory approach, this project engaged 12 adults with acquired neurological disability, 12 support workers, and 10 close others in individual interviews. Each perspective was analysed independently and subsequently merged to construct a holistic model of quality support grounded in lived experience. RESULTS: The model of quality support encompasses interconnected themes spanning dyadic relationships, support worker competency, team dynamics, provider practices, and sector-wide considerations. Key elements include recognising the individual's expertise in their support needs, nurturing effective support relationships, fostering a capable support team, and upholding sector accountability. Authentic choice and personal agency emerged as paramount factors in achieving quality support. CONCLUSIONS: The findings align with disability rights and individualised funding principles, emphasising the centrality of people with lived experience in shaping support services. The research underscores the need to prioritise authentic choice and individual empowerment, offering valuable insights for both practice and policy development in the disability support sector.

The perspective of people with lived experience is paramount to designing quality disability support services aligned with people's needs and preferences.The person with disability needs to be at the centre of all decisions regarding their support and needs to be supported to lead their supports.Quality disability support relies primarily on the interaction between the person with disability and their support worker, and therefore quality support relationships need to be developed and maintained.

"They treat you like a person, they ask you what you want": a grounded theory study of quality paid disability support for adults with acquired neurological disability.

PURPOSE: Adults with acquired neurological disability often require paid disability support to live an ordinary life. However, little is known about what facilitates quality support. This study aims to explore the lived experience of people with acquired neurological disability to develop an understanding of the factors that influence the quality of support. METHODS: Guided by constructivist grounded theory, in-depth qualitative interviews were conducted with 12 adults with acquired neurological disability. Data analysis followed an iterative process to develop themes and subthemes and explore relations between themes to build a model of quality support. RESULTS: Nine key factors emerged in the dyadic space, with the support worker recognising the person as an individual as foundational to quality support. Beyond the dyadic space, three broader contextual factors were identified as influential on the quality of support by mechanism of facilitating or constraining the person with disability's choice. Finally, the provision of quality support was characterised by the person feeling in control. CONCLUSIONS: Findings support the rights of people with disability to quality, individualised support, and a need for interventions to better prepare the disability workforce to deliver support in line with the needs and preferences of people with acquired neurological disability. IMPLICATIONS FOR REHABILITATIONTo provide quality support, disability support workers need to recognise the person with disability as an individual and the expert in their support needs and preferences.The quality of paid disability support is primarily determined by the way the person with disability and support worker work together in the dyadic space.Ensuring people with acquired neurological disability have authentic choice over their support arrangements and daily living is critical to facilitate quality support, and in turn help the person with disability to feel in control.

"Let the people you're supporting be how you learn": a grounded theory study on quality support from the perspective of disability support workers.

PURPOSE: Quality disability support is fundamental to the lives of many adults with acquired neurological disability. However, little is known about the factors that influence the quality of paid support. This study is part of a larger project to develop a holistic understanding of quality support, grounded in the experience of people with acquired neurological disability, close others, and disability support workers. The current study focuses on the support worker perspective. METHODS: Following constructivist grounded theory methodology, interviews were conducted with 12 support workers. Grounded theory analysis was followed to develop themes and subthemes and build a model of quality support. RESULTS: Five key themes, with fifteen subthemes emerged to depict factors influencing the quality of support. The five themes are: being the right person for the role, delivering quality support in practice, working well together, maintaining and improving quality support, and considering the broader context. Findings emphasise the importance of the support worker recognising the person as an individual and respecting their autonomy. CONCLUSIONS: Critical to quality support is centring the needs and preferences of people with disability, improving support worker working conditions and supporting people with disability and support workers to build effective, balanced working relationships.IMPLICATIONS FOR REHABILITATIONDelivering quality support in practice relies upon the support worker recognising, centring, and respecting the autonomy of the person with disability.To deliver quality support, support workers need to feel valued, be committed to the role and actively work to maintain and improve the quality of support provision.Quality support provision is facilitated by the support worker and the person with disability effectively balancing boundaries and friendship, and in turn building a quality working relationship.

"You're supporting the whole person": A grounded theory study of quality support according to close others of people with neurological disability.

PURPOSE: Close others of people with acquired neurological disability often play a key role in supporting their relative to get necessary support, and therefore have valuable insight into what facilitates quality support. Situated within a series of studies aiming to build a holistic model of quality support grounded in the lived experience of adults with acquired neurological disability, support workers and close others, this study explores the perspective of close others. METHOD: Following grounded theory methodology, ten close others participated. In-depth interview data was analyzed using constructivist grounded theory methods to develop themes and explore relationships between the themes. RESULTS: A multi-level system model characterizing quality support at three levels was developed. Key factors at the dyadic level included the support worker recognizing the person as an individual and the dyad working well together. At the team level, it was important for the support team, close others, and providers to engage constructively together. At the sector level, building quality systems to develop the workforce emerged as essential. CONCLUSIONS: The findings complement the perspective of people with disability and support the key notion of quality support honouring the person's autonomy and highlight the need to raise accountability in the disability sector.

The healthcare needs and general practice utilization of people with acquired neurological disability and complex needs: A scoping review.

BACKGROUND: For people with acquired neurological disabilities and complex needs, general practitioners (GPs) play an important role in health management and early intervention for the prevention of comorbidities and health complications. People with disability are a vulnerable group who need and have the right to, quality general practice services. It is therefore important to understand the health needs and service use of this group. The aim of this review was to identify the healthcare needs and general practice utilization of people with acquired neurological disabilities and complex needs. METHODS: A scoping review methodological framework was utilized. Six databases (MEDLINE, PsycInfo, CINAHL, Scopus, Embase and the Cochrane Library) were searched. Articles were included if they reported on general practice service utilization of people with acquired neurological disabilities and complex needs aged between 18 and 65. Articles were required to be peer-reviewed, written in English and published between 2010 and 2021. RESULTS: Thirty-one articles were included in the review. Studies originated from Canada (9), the United States (8), Australia (4), Switzerland (4), the United Kingdom (2), England (1), Norway (1), France (1) and Denmark (1). For many people, GPs were the main healthcare provider. People with disability consult multiple healthcare providers and navigate complex healthcare systems. Commonly presented healthcare needs were bladder, bowel and skin problems, pain and chronic pain, medication needs and mental health concerns. CONCLUSIONS: People with acquired neurological disabilities and complex needs were vulnerable to receiving suboptimal healthcare. The literature highlighted issues regarding the accessibility of services, the fragmentation of health services and inadequate preventative care. GPs were challenged to offer adequate disability-related expertise and to meet the mental health needs of people with disability within time constraints. PATIENT AND PUBLIC INVOLVEMENT: This manuscript was prepared in collaboration with a GP, who is one of the authors. A person with lived experience of acquired neurological disability was engaged to check the alignment of the findings with their personal experience and provide feedback.

Development and preliminary evaluation of a novel participant-led video intervention to train disability support workers.

This paper describes the development and preliminary evaluation of a novel participant-led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was designed following a scoping literature review and workshop with PWD and close others. Subsequently, it was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. An independent mixed methods evaluation of the pilot was conducted with participants, close others and facilitators. All pilot evaluation participants reported high levels of satisfaction with the PLV intervention (mean ratings: primary participants 4.5/5.0; supporters 5.0/5.0; facilitators 4.8/5.0). When primary participants and their supporters were asked to rate how likely they were to recommend the PLV intervention, responses were extremely positive with the mean rating exceeding eight on a 10-point scale. Qualitative analysis of interview data revealed the PLV to be a person-centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports. Further research is required with a larger sample size and longitudinal evaluation of participant outcomes.

Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis.

PURPOSE: Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of this scoping review was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability. METHODS: A comprehensive scoping review of the published literature from 2009-2019 was conducted on five databases: Medline, CINAHL, Embase, PsycINFO and Scopus. RESULTS: Of the 3391 records retrieved, 16 qualitative articles were eligible for review. Thematic synthesis of the findings revealed six key interrelated themes: (1) choice and control, (2) individualised support, (3) disability support worker (DSW) qualities, (4) DSW competence, (5) PWD - DSW relationship, and (6) accessing consistent support. The themes depict factors influencing the quality of paid disability support from the perspective of PWD, close others and DSWs. CONCLUSIONS: Although the evidence base is sparse, the factors identified were in line with international rights legislation and policy ideals. The findings can provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support. Further research is required to understand the interactions between the factors and how to optimise support in practice.Implications for rehabilitationThe quality of paid disability support is determined by a multitude of interrelated factors influenced by the disability support worker's qualities and competencies, the interaction between the person with disability and the disability support worker, as well as external contextual factors.Optimising choice and control for adults with acquired neurological disability and providing individualised support should be a significant focus for disability support workers.Training modules for disability support workers can be informed by five of the identified themes: (1) choice and control, (2) individualised support, (3) DSW qualities, (4) DSW competence and (5) the relationship between PWD and DSWs.

Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: a scoping review protocol.

INTRODUCTION: Adults with disability as the result of an acquired neurological disorder often have varying and complex support needs. Consequently, adults with complex needs often require paid support to enable them to exercise choice and control and participate fully and effectively in society. Given support is so critical for this population, this scoping review aims to further understand the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs. METHODS AND ANALYSIS: The methodology proposed by Arksey and O'Malley, with the modifications recommended by Levac and O'Brien and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: extension for Scoping Reviews will be used. Systematic and comprehensive electronic database searches will be conducted in MEDLINE, CINAHL, PsycINFO, Scopus and Embase. The review will follow a six-stage framework including (1) identifying the research question/s, (2) identifying the relevant studies, with (3) study selection and (4) charting of data by two independent coders, (5) collating, summarising and reporting data and (6) expert consultation which will be sought from people with lived experience, as well as clinical and academic experts. Work on this scoping review began in June 2019 and will be completed by June 2020. ETHICS AND DISSEMINATION: Ethical approval will not be required to conduct the scoping review. However, the consultation with people with lived experience will be conducted via codesign workshops. The codesign workshops have received ethical approval from La Trobe University Ethics Committee (reference number: HEC19232). It is intended that review findings will be made available to relevant stakeholders through a peer-reviewed publication, conference presentations and workshops.