Living through the COVID-19 Pandemic: The Experiences of People with Profound and Multiple Intellectual Disabilities through a Family Carer Lens
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| Title: | Living through the COVID-19 Pandemic: The Experiences of People with Profound and Multiple Intellectual Disabilities through a Family Carer Lens |
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| Language: | English |
| Authors: | Dawn E. Cavanagh (ORCID |
| Source: | Journal of Applied Research in Intellectual Disabilities. 2025 38(4). |
| Availability: | Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: | Y |
| Page Count: | 13 |
| Publication Date: | 2025 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Severe Intellectual Disability, COVID-19, Pandemics, Disproportionate Representation, Social Bias, Trauma, Access to Health Care, Adults, Foreign Countries |
| Geographic Terms: | United Kingdom |
| DOI: | 10.1111/jar.70088 |
| ISSN: | 1360-2322 1468-3148 |
| Abstract: | 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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1481317 |
| Database: | ERIC |
| Abstract: | 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. |
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| ISSN: | 1360-2322 1468-3148 |
| DOI: | 10.1111/jar.70088 |
