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

BACKGROUND: 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.

METHODS: 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.

RESULTS: 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.'

CONCLUSIONS: 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.