What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID ‐19?

Jill Bradshaw*, Roseann Maguire, Amanda Gillooly, Christopher Hatton, Sue Caton, Andrew Jahoda, Edward Oloidi, Laurence Taggart, Stuart Todd, Richard Hastings

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

People with profound intellectual and multiple disabilities can be excluded from research and relatively little is known about the experiences of people with profound intellectual and multiple disabilities and their carers during COVID‐19. This paper aims to further explore the impact on this group via information provided by paid and family carers. It focuses on key areas such as access to social and health services in addition to questions about health and well‐being. In contextualising these results, some comparisons are made to impacts on other groups. This paper also explores what we might do better in future to support this population. Carers were invited to complete an online survey about their experiences and the experiences of people they supported during COVID‐19 and to suggest what might have made life better. They were invited to complete this survey at four time points (waves) between December 2020 and December 2022. This paper reports on Waves 1–3, that is to August 2022. Services for people with profound intellectual and multiple disabilities reduced during COVID‐19 and have yet to return to pre‐pandemic levels. People with profound intellectual and multiple disabilities were reported to experience increased social isolation, deteriorating mental and physical health, increased behavioural signs of distress and reduced life skills. Three areas were identified regarding what would have made life better: opportunities for social contact and activities; improved access to health and social care services, and; consistent and responsive staff. Results are explored in the context of current challenges in service provision, including staff retention and shifts in staff culture during the pandemic.
Original languageEnglish
Article numbere70000
Number of pages10
JournalJournal of Policy and Practice in Intellectual Disabilities
Volume21
Issue number4
Early online date21 Nov 2024
DOIs
Publication statusPublished - 1 Dec 2024

Keywords

  • mental health
  • family carers
  • COVID‐19
  • profound intellectual and multiple disabilities
  • physical health

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