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 Linehan; Tal Araten-Bergam; Jennifer Baumbusch; Julie Beadle-Brown; Christine Bigby; Gail Birkbeck; Valerie Bradley; Michael Brown; Femmianne Bredewold; Masauso Chirwa; Jialiang Cui; Marta Godoy Gimenez; Tiziano Gomiero; Sarka Kanova; Thilo Kroll; Mac MacLachlan; Brigit Mirfin-Veitch; Jayanthi Narayan; Finiki Nearchou; Adam Nolan; Mary-Ann O'Donovan; Flavia H Santos; Jan Siska; Tim Stainton; Magnus Tideman; Jan Tossebro

doi:10.12688/hrbopenres.13077.2

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

HRB Open Res. 2020 Dec 3:3:39. doi: 10.12688/hrbopenres.13077.2. eCollection 2020.

Authors

Christine Linehan¹, Tal Araten-Bergam², Jennifer Baumbusch³, Julie Beadle-Brown⁴, Christine Bigby², Gail Birkbeck⁵, Valerie Bradley⁶, Michael Brown⁷, Femmianne Bredewold⁸, Masauso Chirwa⁹, Jialiang Cui¹⁰, Marta Godoy Gimenez¹¹, Tiziano Gomiero¹², Sarka Kanova¹³, Thilo Kroll¹⁴, Mac MacLachlan¹⁵, Brigit Mirfin-Veitch¹⁶, Jayanthi Narayan¹⁷, Finiki Nearchou¹⁸, Adam Nolan¹, Mary-Ann O'Donovan¹⁹, Flavia H Santos¹⁸, Jan Siska²⁰, Tim Stainton³, Magnus Tideman^{21

22}, Jan Tossebro²³

Affiliations

¹ UCD Centre for Disability Studies, University College Dublin, Belfield, Dublin, Dublin 4, Ireland.
² Living with Disability Research Centre, School of Allied Health, Human Services & Sport, La Trobe University, Bundoora, Victoria, 3086, Australia.
³ Canadian Institute for Inclusion and Citizenship, University of British Columbia, 2080 West Mall, Vancouver, BC Canada, V6T 1Z2, Canada.
⁴ Tizard Centre, University of Kent, Canterbury, Kent, CT2 7NZ, UK.
⁵ Business Information Systems, University College Cork, O'Rahilly Building, Cork, Ireland.
⁶ Human Services Research Institute, 2336 Massachusetts Ave, Cambridge, MA 02140, USA.
⁷ School of Nursing and Midwifery, Queen's University, 97 Lisburn Road, Medical Biology Centre, Belfast, BT9 7BL, UK.
⁸ University of Humanistic Studies, Kromme Nieuwegracht 29, Utrecht, 3512 HD, The Netherlands.
⁹ School of Humanities and Social Sciences, Department of Social Work and Sociology, University of Zambia, Great East Road Campus P.O Box 32379, Lusaka, 10101, Zambia.
¹⁰ Department of Social Work, The Chinese University of Hong Kong, Shatin, New Territories, Hong Kong, China.
¹¹ Department of Psychology, University of Almeria, La Cañada de San Urbano, 04120, Almería, Spain.
¹² ANFFAS Trentino Onlus DAD© Project Group, via Giambattista Unterveger, 38121 Trento Trentino,, Italy.
¹³ Department of Education, University of West Bohemia, Univerzitní 2732/8, Plzeň 3, 301 00, Czech Republic.
¹⁴ School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin, 4, Ireland.
¹⁵ School of Psychology, Maynooth University, Maynooth, Ireland.
¹⁶ Donald Beasley Institute, 248 Cumberland Street, Dunedin Central, Dunedin 9016, New Zealand.
¹⁷ Inclusive Education at Faculty of Health, Education and Society, University of Northampton, Northampton, UK.
¹⁸ UCD School of Psychology, University College Dublin, Belfield, Dublin, 4, Ireland.
¹⁹ Centre for Disability Studies, Sydney Medical School, Faculty of Medicine and Health, University of Sydney, 92-94 Parramatta Rd, Camperdown, Sydney, NSW 2050, Australia.
²⁰ Department of Special Education, Charles University, Magdalény Rettigové 4, Praha 1, 116 39, Czech Republic.
²¹ Department of Social Sciences, Ersta Sköndal Bräcke University, Box 441, Sköndal, SE-128 06, Sweden.
²² School of Health and Welfare, Halmstad University, Box 823, Halmstad, SE 301 18, Sweden.
²³ Department of Social Work, Norwegian University of Science and Technology, Trondheim, NO-7491, Norway.

Abstract

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.

Keywords: COVID-19; Caregivers Carers; Coronavirus; Health Disparity; Intellectual Disability; Intellectual and Developmental Disability; Pandemic.

Grants and funding

Health Research Board, Ireland [COV19-2020-028]