Living Through the COVID-19 Pandemic: The Experiences of People With Profound and Multiple Intellectual Disabilities Through a Family Carer Lens.

Publication date: Jul 01, 2025

People with profound and multiple intellectual disabilities were disproportionately negatively affected by the COVID-19 pandemic. Few studies exist about the perceived longer-term impact of the pandemic on this group. Data were collected through a two-stage narrative interview process. Six family members told their story about what their relative’s lives were like at the first COVID-19 ‘lockdown’, what their lives were like now, and what they hoped their lives would be like in the future. A second interview filled any gaps in the narrative. Data were analysed thematically. Four themes were identified: Deeping exclusion and inequality; ‘I still haven’t recovered’- Exhausted by the pandemic; A traumatic time-Disrupted routines, activities, and relationships and ‘The future is a scary place. ‘ The COVID-19 pandemic exacerbated pre-existing health and social inequalities, leading to new uncertainties post-pandemic. Addressing the existing deficit in service provision should be an urgent priority.

Concepts Keywords
Covid Adult
Future Caregivers
Interview coronavirus
Pandemic COVID-19
Routines COVID‐19
Family
family members
Female
Humans
Intellectual Disability
Male
Middle Aged
Qualitative Research
trauma

Semantics

Type Source Name
disease MESH COVID-19 Pandemic
disease MESH Intellectual Disabilities
disease IDO process

Original Article

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