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

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.

Mental health and COVID‐19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities

“…Significantly, participants' reported improvements in their well‐being at a time when COVID‐19 cases were on the rise in Canada (Cycle 1: Wave 2; Cycles 2 & 3: Wave 3; Our World in Data, 2022 ) and caregivers were experiencing significant distress (Flynn et al . 2021 ; Flynn et al . 2021 ; Gadermann et al .…”

“…As well, pandemic‐related public health restrictions have been particularly challenging for this population, including ongoing disruptions to activities and routines, increased isolation, and reduced access to health care services and supports (Doody & Keenan 2021 ; Flynn et al . 2021 ; Flynn et al . 2021 ; Lunsky et al .…”

‘Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic

“…Despite having more severe symptoms on admission, people with learning disabilities were less likely to access appropriate treatment, including intensive care units. Research led by Hastings and Hatton, and authored by Flynn et al (2021), found severe reductions in social care and support for people with learning disabilities, associated with negative impacts on wellbeing and mental health, with two-thirds of their sample having experienced anger, sadness or anxiety ( Flynn et al, 2021 ). Similar experiences for people with learning disabilities have been demonstrated internationality, with evidence emerging from the Netherlands, Ireland and Italy ( Buonaguro and Bertelli, 2021 ; Embregts et al, 2020 ; McCausland et al, 2021 ).…”

“…With these closures and the disproportionate impact of the virus, people with learning disabilities found themselves at risk and without formalised support ( Flynn and Hatton, 2021 ; Shakespeare et al, 2021 ; Pearson et al., 2022 ). Evidence from the first wave of the pandemic found people with learning disabilities socially isolated and worried about lost support, lost routine, and decreased health and wellbeing ( Flynn et al, 2021 ).…”

Changes in community and hospital‐based health care use during the COVID‐19 pandemic for adults with and without intellectual and developmental disabilities

“… 2020 ; Flynn et al . 2021 ). Rapid changes in health care delivery designed to follow public health restrictions and limit virus spread may pose additional risks to people with IDD, who already experienced challenges accessing appropriate health care prior to the pandemic.…”