Dawn E. Cavanagh, Sue Caton, Jodie Rawles, Chris Hatton, Richard P. Hastings, the Coronavirus and People with Learning Disabilities Study Team
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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.
期刊介绍：
JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.
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