COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.
Christine LinehanTal Araten-BergamJennifer BaumbuschJulie Beadle-BrownChristine BigbyGail BirkbeckValerie BradleyMichael J BrownFemmianne BredewoldMasauso ChirwaJialiang CuiMarta Godoy GimenezTiziano GomieroSarka KanovaPatrick GibbonsMac MacLachlanBrigit Mirfin-VeitchJayanthi NarayanFiniki NearchouAdam NolanMary-Ann O'DonovanFlavia H SantosJan SiskaTim StaintonTideman MagnusJan TossebroPublished in: HRB open research (2020)
Background: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with 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 their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and 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 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks 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.
Keyphrases
- healthcare
- coronavirus disease
- sars cov
- social media
- cross sectional
- palliative care
- primary care
- quality improvement
- intellectual disability
- mental health
- health information
- public health
- randomized controlled trial
- multiple sclerosis
- emergency department
- long term care
- deep learning
- climate change
- artificial intelligence
- induced pluripotent stem cells
- adverse drug