Digital participation of people with profound and multiple learning disabilities during the Covid‐19 pandemic in the UK

Sue Caton, Jill Bradshaw, Amanda Gillooly, Chris Hatton, Samantha Flynn, Edward Oloidi, Andrew Jahoda, Roseann Maguire, Anna Marriott, Peter Mulhall, Laurence Taggart, Stuart Todd, David Abbott, Stephen Beyer, Nick Gore, Pauline Heslop, Katrina Scior, Richard P. Hastings

Research output: Contribution to journalArticlepeer-review

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Background: During the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method: Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic. Findings: Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion: Around half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them.
Original languageEnglish
Pages (from-to)163-174
Number of pages12
JournalBritish Journal of Learning Disabilities
Issue number2
Early online date29 Aug 2022
Publication statusPublished online - 29 Aug 2022

Bibliographical note

Funding Information:
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). This research was jointly funded by UK Research and Innovation (MR/V028596/1) and the National Institute for Health Research (COV0196) and supported by the Department for Health and Social Care (National Institute for Health Research) as part of the UKRI‐DHSC COVID‐19 Rapid Response Rolling Call. The views expressed in this publication are those of the authors and not necessarily those of DHSC, NIHR, UKRI or MRC.

Publisher Copyright:
© 2022 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd.


  • communication
  • intellectual disability
  • PMLD (profound and multiple learning disabilities)
  • social interaction


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