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  • 1.
    Linehan, Christine
    et al.
    UCD Centre for Disability Studies, University College Dublin, Ireland.
    Araten-Bergam, Tal
    La Trobe University, Australia.
    Baumbusch, Jennifer
    University of British Columbia, Canada.
    Beadle-Brown, Julie
    University of Kent, United Kingdom.
    Bigby, Christine
    La Trobe University, Australia.
    Birkbeck, Gail
    University College Cork, Ireland.
    Bradley, Valerie
    Human Services Research Institute, Cambridge, USA.
    Brown, Michael
    Queen's University, Belfast, United Kingdom.
    Bredewold, Femmianne
    University of Humanistic Studies, the Netherlands.
    Chirwa, Masauso
    University of Zambia, Zambia.
    Cui, Jialiang
    The Chinese University of Hong Kong, Hong Kong.
    Godoy Gimenez, Marta
    University of Almeria, Spain.
    Gomiero, Tiziano
    ANFFAS Trentino Onlus DAD© Project Group, Italy.
    Kanova, Sarka
    University of West Bohemia, the Czech Republic.
    Kroll, Thilo
    University College Dublin, Ireland.
    MacLachlan, Mac
    Maynooth University, Ireland.
    Mirfin-Veitch, Brigit
    Donald Beasley Institute, New Zealand.
    Narayan, Jayanthi
    University of Northampton, United Kingdom.
    Nearchou, Finiki
    University College Dublin, Ireland.
    Nolan, Adam
    University College Dublin, Ireland.
    O'Donovan, Mary-Ann
    University of Sydney, Australia.
    Santos, Flávia H.
    University College Dublin, Ireland.
    Šiška, Jan
    Charles University, the Czech Republic.
    Stainton, Tim
    University of British Columbia, Canada.
    Tideman, Magnus
    Ersta Sköndal Bräcke högskola, Institutionen för socialvetenskap. Högskolan i Halmstad.
    Tossebro, Jan
    Norwegian University of Science and Technology, Norway.
    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 caregivers2020Ingår i: HRB open research, ISSN 2515-4826, Vol. 3, artikel-id 39Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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.

  • 2.
    Linehan, Christine
    et al.
    University College Dublin, Ireland.
    Birkbeck, Gail
    University College Dublin, Ireland; University College Cork, Ireland.
    Araten-Bergman, Tal
    La Trobe University, Australia.
    Baumbusch, Jennifer
    University of British Columbia, Canada.
    Beadle-Brown, Julie
    University of Kent, United Kingdom.
    Bigby, Christine
    La Trobe University, Australia.
    Bradley, Valerie
    Human Services Research Institute, USA.
    Brown, Michael
    Queen's University, Belfast, United Kingdom.
    Bredewold, Femmianne
    University of Humanistic Studies, the Netherlands.
    Chirwa, Masauso
    University of Zambia, Zimbabwe.
    Cui, Jialiang
    The Chinese University of Hong Kong, Hong Kong.
    Godoy Gimenez, Marta
    University of Almeria, Spain.
    Gomeiro, Tiziano
    ANFFAS Trentino Onlus DAD© Project Group, Italy.
    Kanova, Šárka
    University of West Bohemia, the Czech Republic.
    Kroll, Thilo
    University College Dublin, Ireland.
    Li, Henan
    Human Services Research Institute, USA.
    MacLachlan, Mac
    Maynooth University, Ireland.
    Narayan, Jayanthi
    University of Northampton, United Kingdom.
    Nearchou, Finiki
    University College Dublin, Ireland.
    Nolan, Adam
    University College Dublin, Ireland.
    O'Donovan, Mary-Ann
    University of Sydney, Australia.
    Santos, Flavia H.
    University College Dublin, Ireland.
    Šiška, Jan
    Charles University, the Czech Republic.
    Stainton, Tim
    University of British Columbia, Canada.
    Tideman, Magnus
    Marie Cederschiöld högskola, Institutionen för socialvetenskap. Högskolan i Halmstad.
    Tossebro, Jan
    Norwegian University of Science and Technology, Norway.
    COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.2022Ingår i: HRB open research, ISSN 2515-4826, Vol. 5, artikel-id 27Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support.

    Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey.

    Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.

    Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

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