Three Years on From "Stay at Home": Perspectives of People With Intellectual Disabilities About the Ongoing Impact of the COVID-19 Pandemic.
Jodie Rawles, Sue Caton, Dawn Cavanagh and 2 others
PMID 40624822WHAT IT FOUND
Eight people with intellectual disabilities described lockdown as stripping away their daily routines and independence.
Loss of access to pharmacies and shops caused distress. Group living brought isolation and bereavement. Families and charities helped maintain connection. Participants remain angry about the government's handling of the pandemic.
Key findings
01Participants experienced significant distress when prevented from performing daily activities of self-care, such as collecting prescriptions or shopping, which they viewed as sources of routine and pride.
02Living in group settings like residential homes created unique challenges, including forced self-isolation in bedrooms, anxiety about staff bringing in infection, and the trauma of housemate deaths.
03Three years later, participants expressed anger towards the government for failing to understand the impact of restrictions on people with intellectual disabilities, while families and charities were credited with helping maintain social connections.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample size was very small (eight participants), limiting the generalisability of the findings. Participants were more socially and economically active than many people with intellectual disabilities; most had work or advocacy connections and digital skills, so the experiences of more isolated individuals may differ. The study focused on retrospective narratives three years after the events, which may affect the accuracy or emotional intensity of the memories. People with profound and multiple disabilities were not interviewed directly; their experiences were reported elsewhere by caregivers.
Declared interests
The authors declared no conflicts of interest. The study was funded by the National Institute for Health and Care Research.
The easy way to misread this
Do not interpret these findings as evidence that lockdowns were universally experienced in this way. The participants were relatively high-functioning and digitally included. People with profound disabilities or those without online access may have had entirely different experiences, and this study does not capture that.