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

Topping, Megan; Douglas, Jacinta; Winkler, Di

doi:10.1080/09638288.2020.1830190

Cited by 8 publications

(8 citation statements)

References 78 publications

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“…Their existing empathy may have been a factor that encouraged them to seek (and attain) employment as disability workers. Topping et al ( 2020 ) found that empathy and understanding are important attributes for disability support workers. In addition, during the focus groups, participants indicated they had prior personal experiences of interactions with people with disability.…”

Section: Discussionmentioning

confidence: 99%

“…Empathy is “the ability to share someone else's feelings or experiences by imagining what it would be like to be in that person's situation” (Cambridge University Press, 2022 ). Empathy is a vital skill for disability support workers because the presence of empathy may improve the quality of communication and relationships with service users, as well as the responsiveness of workers to the needs of service users (Batchelder et al, 2017 ; Collins et al, 2017 ; Neubauer, 2020 ; Topping et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

“…Overall, the participants reported high baseline scores for empathy, indicating that even though the participants were novices in working in the disability sector, they had already attained empathy for people living with disability. Their existing empathy may have been a factor that encouraged them to seek (and attain) employment as disability workers Topping et al (2020). found that empathy and understanding are important attributes for disability support workers.…”

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confidence: 99%

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Virtual reality to foster empathy in disability workers: A feasibility study during COVID‐19

Wilding

Young

Cummins³

et al. 2022

Research Intellect Disabil

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Background: Empathy is a critical skill required by disability workers. Virtual reality may increase access to staff training to foster empathy. Method:A mixed methods feasibility study investigated a custom-built virtual reality program, IMercyVE, which aimed to immerse a disability worker in a first-person perspective of having intellectual disability. Data were collected through online surveys (n = 9) completed before and after use of IMercyVE, and by videoconference focus groups (n = 6).Results: Qualitative findings included that IMercyVE delivered a novel experience for participants and a distinctive mode of learning that assisted participants to deepen their levels of empathy. Descriptive analyses of the surveys indicated that participants' empathy increased after engaging with IMercyVE.Conclusions: IMercyVE has the potential to be offered as a remotely delivered and flexible staff training modality suitable for building empathy. Further research with a larger sample is warranted.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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Virtual reality to foster empathy in disability workers: A feasibility study during COVID‐19

Wilding

Young

Cummins³

et al. 2022

Research Intellect Disabil

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“…People with acquired neurological conditions who are eligible for NDIS funding often experience severe or profound levels of core activity limitations due to varying levels of cognitive, communication or physical impairments. 18 19 The breadth and severity of these impairments coincide with primary healthcare needs distinct from the rest of the population and increased health challenges that often fall to GPs for initial treatment and management. 11 Previous research has found that although people with acquired neurological disability are high users of GP services, 20–22 they are less likely to receive comprehensive care 22 23 including low frequency of preventive care practices.…”

Section: Introductionmentioning

confidence: 99%

Primary healthcare needs and service utilisation of people with disability: a data linkage protocol

Douglas

Winkler

McLeod³

et al. 2023

BMJ Open

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IntroductionGeneral practitioners (GPs) play a crucial role in the early management and treatment of the comorbidities and complications experienced by people with disability. However, GPs experience multiple constraints, including limited time and disability-related expertise. Knowledge gaps around the health needs of people with disability as well as the frequency and extent of their engagement with GPs mean evidence to inform practice is limited. Using a linked dataset, this project aims to enhance the knowledge of the GP workforce by describing the health needs of people with disability.Methods and analysisThis project is a retrospective cohort study using general practice health records from the eastern Melbourne region in Victoria, Australia. The research uses Eastern Melbourne Primary Health Network (EMPHN)-owned de-identified primary care data from Outcome Health’s POpulation Level Analysis and Reporting Tool (POLAR). The EMPHN POLAR GP health records have been linked with National Disability Insurance Scheme (NDIS) data. Data analysis will involve comparisons across disability groups and the rest of the population to explore utilisation (eg, frequency of visits), clinical and preventative care (eg, cancer screening, blood pressure readings) and health needs (eg, health conditions, medications). Initial analyses will focus on NDIS participants as a whole and NDIS participants whose condition is either an acquired brain injury, stroke, spinal cord injury, multiple sclerosis or cerebral palsy, as classified by the NDIS.Ethics and disseminationEthics approval was obtained from the Eastern Health Human Research Ethics Committee (E20/001/58261), and approval for the general collection, storage and transfer of data was from the Royal Australian College of General Practitioners National Research Ethics and Evaluation Committee (protocol ID: 17-088). Dissemination mechanisms will include the engagement of stakeholders through reference groups and steering committees, as well as the production of research translation resources in parallel with peer-reviewed publications and conference presentations.

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“…Whilst the experience and education of DSWs are important, quality of support is dependent on a multitude of factors (Topping et al, 2020 ). To provide individualised person‐centred support, DSWs must learn the unique needs and preferences of the individual they are supporting (Fadyl et al, 2011 ; Gridley et al, 2014 ).…”

Section: Introductionmentioning

confidence: 99%

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

Douglas

D’Cruz

Winkler

et al. 2022

Health Social Care Comm

Self Cite

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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.

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

Cited by 8 publications

References 78 publications

Virtual reality to foster empathy in disability workers: A feasibility study during COVID‐19

Virtual reality to foster empathy in disability workers: A feasibility study during COVID‐19

Primary healthcare needs and service utilisation of people with disability: a data linkage protocol

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

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