How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review

Hwang, I-Ting; Hallock, Taye M.; Schwartz, Alan M.; Roth, Stéphanie; Pfeiffer, Beth; Kramer, Jessica

doi:10.1111/jar.12931

Cited by 5 publications

(6 citation statements)

References 86 publications

(226 reference statements)

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“…The COVID‐19 pandemic forced clinical services to develop remote modes of delivery, and there are many publications describing how intellectual disability services have faced this challenge (e.g., Buono et al, 2021; Hwang et al, 2022; Sheehan et al, 2021; Wos et al, 2021; Zaagsma et al, 2020). However, there are few studies of the delivery of specific mental health interventions, and to the best of our knowledge, this is the first report dealing with remote delivery of EMDR to people with intellectual disabilities.…”

Section: Discussionmentioning

confidence: 99%

Some observations on remote delivery of eye‐movement desensitisation and reprocessing to people with intellectual disabilities

Unwin

Stenfert-Kroese

Rogers

et al. 2023

Policy Practice Intel Disabi

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It is increasingly recognised that many people with intellectual disabilities suffer from post-traumatic stress disorder (PTSD). Eye-movement desensitisation and reprocessing (EMDR) has been proposed as a potentially helpful intervention that is less reliant on verbal skills than other effective treatments for PTSD and therefore could be more effective than verbal interventions for people with intellectual disabilities. The Trauma-AID project is a randomised clinical trial (RCT) evaluating the effectiveness of a bespoke EMDR protocol for adults with intellectual disability and PTSD, which incorporates a prolonged phase of Psycho-Education and Stabilisation (PES) prior to the trauma confrontation phase of EMDR. The COVID-19 pandemic struck during the feasibility phase of the Trauma-AID project, necessitating a second feasibility study to evaluate the acceptability and feasibility of remote or hybrid delivery of the PES + EMDR protocol. To this end, we conducted two online surveys of therapists followed by interviews with clients, carers and senior therapists. The surveys were analysed descriptively. Content analysis was used for client and carer interviews, and framework analysis for therapist interviews. All stakeholders reported positive experiences of EMDR; however, some challenges were identified. The majority of clients, carers and therapists interviewed reported that the intervention, whether PES alone or the full PES-EMDR package, had improved symptoms of PTSD and psychological well-being, and carers also reported decreases in challenging behaviour. A full account of the data is

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Section: Discussionmentioning

confidence: 99%

Some observations on remote delivery of eye‐movement desensitisation and reprocessing to people with intellectual disabilities

Unwin

Stenfert-Kroese

Rogers

et al. 2023

Policy Practice Intel Disabi

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“… 35 39–44 As a result, there is an emerging body of literature on the benefits of online methodologies to support the accessibility of research for people with disabilities, 9 37 44–47 which we trust will continue to grow. 46 …”

Section: Setting and Overview Of Online Focus Groupsmentioning

confidence: 99%

“…35 39-44 As a result, there is an emerging body of literature on the benefits of online methodologies to support the accessibility of research for people with disabilities, 9 37 44-47 which we trust will continue to grow. 46 In 2021, the Australian Department of Health commissioned researchers from The University of Sydney to develop a set of self-report disability questions suitable for a potential voluntary patient registration (VPR) enrolment form being considered for Australian general practices. 31 48 49 The purpose of the VPR scheme is to strength the continuity of care relationship between individuals and their regular general practice.…”

Section: Setting and Overview Of Online Focus Groupsmentioning

confidence: 99%

“…This is because they offer an accessible alternative to face-to-face data collection, are cost-effective and more easily able to reach socially isolated and/or dispersed populations 35 39–44. As a result, there is an emerging body of literature on the benefits of online methodologies to support the accessibility of research for people with disabilities,9 37 44–47 which we trust will continue to grow 46…”

Section: Setting and Overview Of Online Focus Groupsmentioning

confidence: 99%

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A call to action for more disability-inclusive health policy and systems research

et al. 2023

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To date, the exclusion of people with disability participating in research has limited the evidence base informing health system strengthening policy and practice more generally, and addressing disability-related inequalities in access to health services and better health outcomes more particularly. Given that more than 1 billion people, or 16% of the world’s population, have a disability, we may fail to respond to the needs of a large proportion of the population unless we are purposeful with inclusion. Our research in this area indicates that online qualitative methods can be effective in engaging under-represented groups and are essential to ensure their input into health policy and systems research. This has important implications for researchers whose responsibility it is to make all health research disability inclusive, for ethical and methodological reasons, so they do not perpetuate the under-representation of people with disability in health policy and systems research. Our paper puts forward several recommendations to facilitate more people with disability participating in health policy and systems research. By critically reflecting on a health system strengthening research project, in which we purposefully aimed to support the participation of people with disability, we identify lessons learnt and issues to consider when planning and conducting accessible research. We also propose a set of actions for moving the agenda forward.

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“…How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review [43] The paper reviews technologies intended for remote research communication of people with IDD during health emergencies, with emphasis on the COVID-19 pandemic.…”

Section: An Overview Of Previous Researchmentioning

confidence: 99%

Impact of Assistive Technologies to Inclusive Education and Independent Life of Down Syndrome Persons: A Systematic Literature Review and Research Agenda

2022

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Since the beginning of the 21st century, the lifespan of people born with Down syndrome (DS) has increased. They now outlive their parents and rely on their relatives who usually sacrifice their own families to care for their disabled siblings. To reduce the pressure on families and the wider community, it is crucial to prepare DS people for independent life from early childhood. Emerging technologies can significantly support the process of acquiring the skills that are necessary for solving real-life problems at home and work. To assess their impact and estimate how much they are implemented in inclusive education, a review of 564 papers published after 2015 was done using the PRISMA review model. After gradual exclusion, 24 papers were used for the final review. Thematic analysis resulted in four themes with one common concept: variety. The results of examining the four research questions defined in the paper’s background confirm that the synergy of emerging assistive technologies and inclusive education has the potential of becoming a very effective strategy for creating an independent life for DS individuals. Many questions remain open, mainly related to a DS persons’ specific needs and capabilities. The acceptance of the proposed synergy will depend on them.

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How people with intellectual and developmental disabilities on collaborative research teams use technology: A rapid scoping review

Cited by 5 publications

References 86 publications

Some observations on remote delivery of eye‐movement desensitisation and reprocessing to people with intellectual disabilities

Some observations on remote delivery of eye‐movement desensitisation and reprocessing to people with intellectual disabilities

A call to action for more disability-inclusive health policy and systems research

Impact of Assistive Technologies to Inclusive Education and Independent Life of Down Syndrome Persons: A Systematic Literature Review and Research Agenda

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