ALL Co-director, Mac MacLachlan co-athored the paper, with colleagues from various institutions.
Abstract
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.
Keywords
Caregivers Carers, Coronavirus, COVID-19, Health Disparity, Intellectual and Developmental Disability, Intellectual Disability, Pandemic
Full Citation
Christine Linehan, Julie Beadle-Brown, Christine Bigby, Gail Birkbeck, Valerie Bradley, Michael Brown, Femmianne Bredewold, Masauso Chirwa, Sarka Kanova, Thilo Kroll, Mac MacLachlan, Jayanthi Narayan, Finiki Nearchou, Adam Nolan, Mary-Ann O'Donovan, Flavia H. Santos, Jan Siska, Magnus Tideman, Jan Tossebro (2020) COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers [version 1; peer review: 1 approved]. HRB Open Res 2020, 3:39 (https://doi.org/10.12688/hrbopenres.13077.1)
