Living Through the COVID-19 Pandemic: The Experiences of People With Profound and Multiple Intellectual Disabilities Through a Family Carer Lens.
Dawn E Cavanagh, Sue Caton, Jodie Rawles and 2 others
PMID 40566995WHAT IT FOUND
Family carers described the pandemic as a traumatic event that deepened exclusion and left relatives with profound disabilities without essential therapies.
They reported lasting health deterioration, lost skills, and anxiety about future care, with no recovery in services eighteen months after restrictions ended.
Key findings
01Carers reported that their relatives were overlooked in pandemic planning, specifically regarding shielding and vaccination, and faced discrimination such as Do Not Attempt Cardiopulmonary Resuscitation orders being placed without family consent.
02Essential health and social care services, including physiotherapy and speech and language therapy, remained inaccessible or reduced eighteen months after restrictions were lifted, leading to carers reporting physical deterioration and loss of function in their relatives.
03Disruption to routines and relationships was perceived as psychologically traumatic, with carers reporting increased behaviours that challenge, anxiety, and a failure of relationships to recover even after restrictions ended.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study relied entirely on family carers as proxies for the experiences of people with profound and multiple intellectual disabilities, who were not interviewed directly. This means the findings reflect the carers' perceptions and interpretations, not necessarily the direct experiences of the patients. The sample was small (ten family members) and drawn from a specific wider study, limiting generalizability. Most participants were nearing retirement age, which may skew the findings towards concerns about long-term care planning and aging rather than the experiences of younger carers or parents of children with profound disabilities. The retrospective nature of the interviews (three years post-pandemic start) means data relied on memory, which can be influenced by current feelings and subsequent events.
Declared interests
None declared in the provided text.
The easy way to misread this
Do not treat these findings as evidence of what the people with profound disabilities themselves experienced or felt. The data comes exclusively from the perspective of their family carers, who were interpreting their relatives' behaviours and needs through their own lens of stress and observation.