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The experiences of adults with learning disabilities in the UK during the COVID-19 pandemic: qualitative results from Wave 1 of the Coronavirus and people with learning disabilities study

Samantha Flynn (Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry, UK)
Sue Caton (Department of Social Care and Social Work, Manchester Metropolitan University, Manchester, UK)
Amanda Gillooly (Institute of Health and Wellbeing, University of Glasgow College of Medical Veterinary and Life Sciences, Glasgow, UK)
Jill Bradshaw (Tizard Centre, University of Kent, Canterbury, UK)
Richard P. Hastings (Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, Coventry, UK and is a Monash Warwick Professor at the Centre for Developmental Psychiatry and Psychology, Monash University, Melbourne, Australia.)
Chris Hatton (Department of Social Care and Social Work, Manchester Metropolitan University, Manchester, UK)
Andrew Jahoda (Institute of Health and Wellbeing, University of Glasgow College of Medical Veterinary and Life Sciences, Glasgow, UK)
Peter Mulhall (Institute of Nursing and Health Research, Ulster University – Jordanstown Campus, Newtownabbey, UK)
Stuart Todd (Unit for Development in Intellectual and Developmental Disabilities, University of South Wales, Pontypridd, UK)
Stephen Beyer (National Centre for Mental Health, Cardiff University, Cardiff, UK)
Laurence Taggart (Institute of Nursing and Health Research, Ulster University – Jordanstown Campus, Newtownabbey, UK)
Coronavirus and people with learning disabilities Study Team (The Coronavirus and people with learning disabilities study team work at universities and in organisations across the UK)

Tizard Learning Disability Review

ISSN: 1359-5474

Article publication date: 27 October 2021

Issue publication date: 30 November 2021

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Abstract

Purpose

The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK.

Design/methodology/approach

Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic.

Findings

Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life.

Practical implications

Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities.

Originality/value

This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study.

Keywords

Acknowledgements

Thank you to the following collaborating organisations without whom this project would not be possible: All Wales People First, Learning Disability Wales, All Wales Forum of Parents and Carers of People with Learning Disabilities, Scottish Commission for Learning Disability, Promoting a More Inclusive Society (PAMIS), Positive Futures, Mencap Northern Ireland, Learning Disability England, PMLD Link, Positive Futures, CAN Northern Ireland, Families Involved in Northern Ireland (FINI).Funding: The study was Jointly funded by UK Research and Innovation (MR/V028596/1) and the National Institute for Health Research (COV0196).Conflicts of interest: none.

Citation

Flynn, S., Caton, S., Gillooly, A., Bradshaw, J., Hastings, R.P., Hatton, C., Jahoda, A., Mulhall, P., Todd, S., Beyer, S. and Taggart, L. (2021), "The experiences of adults with learning disabilities in the UK during the COVID-19 pandemic: qualitative results from Wave 1 of the Coronavirus and people with learning disabilities study", Tizard Learning Disability Review, Vol. 26 No. 4, pp. 224-229. https://doi.org/10.1108/TLDR-09-2021-0027

Publisher

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Emerald Publishing Limited

Copyright © 2021, Emerald Publishing Limited

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