9 research outputs found

    COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

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    Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies

    Injuries and falls among adults with intellectual disability: A prospective New Zealand cohort study

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    Background: Falls and fall-related injuries are a problem for many adults with intellectual disability. Most previous studies have collected falls data retrospectively, using organisational incident reports. We developed tools to specifically collect fall-related data and potential fall risk data. This paper reports on the development of these tools and the fall-related data collected in 3 prospective studies. Method: Consultations with 33 stakeholders representing 29 organisations and 5 focus group discussions were used to develop 2 tools for gathering information. Studies in 3 cities applied the tools to explore their acceptability, utility, and cultural appropriateness. Results: Two simple tick box forms were developed; both were easy and quick to complete. In the studies, 135 individuals participated (70 males, 65 females, aged 45 [SD = 11] years), of whom 27% experienced a fall; 39% of these resulted in an injury. Injuries were mostly bruises (30%) and grazes (28%), particularly to the facial area (42%). The 6-month period prevalence of falls was 0.76%. Most falls occurred indoors and during the daytime. Individuals appeared more likely to experience a fall if they had had previous falls and/or fractures, epilepsy, orthopaedic-related conditions, and problems with gait and balance. Conclusion: A robust process ensured the acceptability, utility, face and content validity, and cultural safety of our data collection tools. Falling is a serious problem for many people with intellectual disability, but the reasons for falling appear multifaceted and complex, complicating the development of fall prevention programs

    Building the Research Capacity of Clinical Physical Therapists Using a Participatory Action Research Approach

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    BACKGROUND: This 2-year study explored the experiences of clinical physical therapists who used a participatory action research (PAR) approach to learn about the practice of clinical research. OBJECTIVES: The aim of this study was to explore the experiences of physical therapists who were conducting clinical research, facilitated by a PAR approach. DESIGN: A mixed-methods research design was used. METHODS: Physical therapists completed questionnaires, were interviewed, and participated in focus groups prior to and after the 1-year intervention and 1 year later. The research facilitator took field notes. Questionnaire data were analyzed descriptively, and themes were developed from the qualitative data. Twenty-five therapists took part in 4 self-selected groups. RESULTS: Three groups actively participated in the PAR research projects (n=14). The remaining 11 therapists decided not to be involved in clinical research projects but took part in the study as participants. After 1 year, one group completed the data collection phase of their research project, and a second group completed their ethics application. The third group ceased their research project but hosted a journal club session. At completion of the study, the experiences of the physical therapists were positive, and their confidence in conducting research and orientation toward research had increased. The perceptions of physical therapists toward research, relationships among individuals, and how the clinical projects were structured influenced the success of the projects. LIMITATIONS: Only physical therapists of one hospital and no other health care practitioners were included in this study. CONCLUSIONS: Fourteen physical therapists divided among 3 PAR groups were overall positive about their experiences when they conducted a research project together. This finding shows that a PAR approach can be used as a novel tool to stimulate research participation in clinics
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