Chris Hatton (Manchester Metropolitan University), Richard Hastings (University of Warwick) and the Project Team*
The Coronavirus and Learning Disability Study has been tracking the experiences of adults with learning disabilities through the COVID-19 pandemic over time across the four UK nations. Wave 1 data were collected between December 2020 and February 2021, mostly at a time of UK-wide lockdown and before COVID-19 vaccines were prioritised for all adults with learning disabilities (see here for Wave 1 findings). Here we report on findings from Wave 2 of the project, where we heard from people during April and May 2021 when restrictions were being eased and COVID-19 vaccination was up and running for adults with learning disabilities.
There are two cohorts of participants in this project.
- In Cohort 1, adults with learning disabilities were interviewed by researchers. In Wave 2, 598 adults were interviewed (an 86% retention rate for those who took part in Wave 1).
- In Cohort 2, family carers or paid support staff took part in an online survey about the experiences of the adult with learning disabilities who they supported/cared for. These were likely to be adults with more severe to profound learning disabilities. In Wave 2, 273 family members and support workers completed surveys (a 71% retention rate for those who took part in Wave 1). In Cohort 2 during Wave 2, 122 of the 273 adults were described as having profound and multiple learning disabilities (PMLD).
This blog presents a selection of the findings from Wave 2 of the project, which we released in June and July 2021 as a series of briefings with accompanying Easy Read versions (the briefings can be found here). The findings cover a wide range of issues relating to people’s circumstances and experiences of the COVID-19 pandemic – this blog highlights a selection of the findings potentially relevant to social care.
COVID-19
- 10% of people in Cohort 1 and 13% of people in Cohort 2 had had coronavirus.
- Of those who had ever had coronavirus, 10% of people in Cohort 1 and 6% of people in Cohort 2 had contracted coronavirus more than a month previously but had not fully recovered.
- In the last four weeks, 5% of people in Cohort 1 and 6% of people in Cohort 2 were reported to have been supported by a support worker who had contracted coronavirus.
- In the last four weeks, 2% of people in Cohort 1 and 3% of people in Cohort 2 were reported to be living with someone who had contracted coronavirus.
COVID-19 vaccination
- 94% of people in Cohort 1 and 91% of people in Cohort 2 had received at least one dose of the COVID-19 vaccine; 34% of people in Cohort 1 and 48% of people in Cohort 2 had received two doses.
Managing COVID-19 risk at home
- 21% of people in Cohort 1 and 24% of people in Cohort 2 had been tested for coronavirus in the last four weeks.
- For 66% of people in Cohort 1 and 45% of people in Cohort 2, family members or support workers wear PPE (like masks, gloves or aprons) when they are with them.
- For 61% of those people in Cohort 1 in relevant living circumstances, their service had imposed some form of visitor restrictions in the last four weeks.
- For 38% of those people in Cohort 2 in relevant living circumstances, their service had imposed some form of visitor restrictions in the last four weeks. For a further 48% of people in Cohort 2, their family/friends had voluntarily restricted their visits to protect the person.
- 9% of people in Cohort 1 and 35% of people in Cohort 2 were still shielding (whether they had been received an official shielding letter or not) at Wave 2.
Managing COVID-19 risk outside the home
- Within Cohort 1, 14% of people were worried a lot about getting infected with COVID-19, 32% were worried a lot about their family or friends getting infected with COVID-19, and 19% were worried a lot about giving COVID-19 to someone else.
- Within Cohort 1, 10% of people were worried a lot about leaving their home.
- Although 20% of people in Cohort 1 were exempt from wearing a face mask, 44% of people wore a face mask all the time when they were out and a further 46% wore a face mask in enclosed spaces, such as public transport or shops.
- Although 62% of people in Cohort 2 were exempt from wearing a face mask, 27% wore a face mask all the time when they were out and a further 30% wore a face mask in enclosed spaces, such as public transport or shops.
Health and social care support
- 37% of people in Cohort 1 and 37% of people in Cohort 2 had had some contact with their GP in the last four weeks, mainly by phone.
- 15% of people in Cohort 1 and 15% of people in Cohort 2 had had some contact with their social worker in the last four weeks, through a mixture of face to face, video call and phone.
- 21% of people in Cohort 1 and 25% of people in Cohort 2 had used a day service in the last four weeks, mostly by attending the day service in person.
- 52% of people in Cohort 1 and 18% of people in Cohort had been involved in community activities organised by a service, with most of these activities being online.
- When asked about the services that they need but are not getting at the moment, people in Cohort 1 most commonly said access to their social worker and other professionals, followed by reduced access to day services and community activities. In Cohort 2, the most common response was having no or significantly reduced access to day services, followed by limited access to activities and the community.
- Of those with a personal budget, 15% of people in Cohort 2 and 32% of people in Cohort 2 were currently using this to pay for services that they were not getting.
Digital lives
- In Cohort 1, the most common uses of the internet for people with learning disabilities were being with friends and family, using social media, and doing online activities with other people.
- In Cohort 2, the most common uses of the internet were being with friends and family, streaming television and films, and doing online activities with other people.
- 19% of people in Cohort 1 and 3% of people in Cohort 2 were using the internet for work or volunteering.
- 60% of people in Cohort 1 and 42% of people in Cohort 2 used the internet for more than two hours per day.
Carers
- On a scale of 0 to 10, family carers and paid support staff of people with learning disabilities rated their happiness as an average score of 6.2 at Wave 2, compared to 6.9 – 7.1 for adults in Great Britain at the same time as Wave 2 (ONS) and 5.8 at Wave 1.
- On a scale of 0 to 10, family carers and paid support staff of people with learning disabilities rated their anxiety as an average score of 4.8 at Wave 2, compared to 3.8 – 3.9 for adults in Great Britain at the same time as Wave 2 (ONS) and 5.5 at Wave 1.
- At Wave 2 the most common reported effects of caring on carers’ health were general feelings of stress (66%), feeling tired (61%), disturbed sleep (59%), feeling depressed (40%), and being short-tempered or irritable (36%).
What happens next?
Following extensive work by and with collaborating organisations across the UK, the Wave 3 interviews and surveys have started in July for people who took part in the Wave 1 and/or Wave 2 interviews and surveys. More details are available on our project website and through social media:
Twitter: @CoronavirusLD
Instagram: coronavirusLD
Project teams and acknowledgements:
*Sue Caton (Manchester Metropolitan University); Samantha Flynn, Nikita Hayden and Andreas Paris (University of Warwick); Anna Marriott (NDTi); Andrew Jahoda, Amanda Gillooly and Roseann Maguire (University of Glasgow); Laurence Taggart and Peter Mulhall (University of Ulster); Stuart Todd and Edward Oloidi (University of South Wales); Jill Bradshaw and Nick Gore (University of Kent); Stephen Beyer (Cardiff University); Katrina Scior (UCL); David Abbott and Pauline Heslop (University of Bristol)
This research was funded by UK Research and Innovation (Medical Research Council), 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.
This document contains the results from independent research funded by the Department for Health and Social Care (DHSC) (National Institute for Health Research; NIHR) and UK Research and Innovation (UKRI) (Medical Research Council; MRC). The views expressed in this document are those of the author(s) and not necessarily those of DHSC, NIHR, UKRI or MRC.
