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

TL;DR

The paper explores how the pandemic deeply affected people with profound disabilities through the experiences of their family carers.

Contribution

It provides new insights into the long-term impact of the pandemic on this vulnerable group through narrative interviews.

Findings

The pandemic deepened exclusion and inequality for people with profound disabilities.

Family carers reported exhaustion and trauma from disrupted routines and relationships.

The future remains uncertain and scary for this group post-pandemic.

Abstract

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.