Evidence map›Paper›PMID 39717989›Full record

ArticleJournal of intellectual disability research : JIDR2025

Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID-19 Pandemic in the UK: Longitudinal Study.

Paul A Thompson, Eleanor Summers, Sue Caton, Nikita Hayden, Stuart Todd, Edward Oloidi, Laurence Taggart, Rosemary Kelly, Jill Bradshaw, Roseann Maguire and 4 more

Abstract read
In one paragraph

Article in Journal of intellectual disability research : JIDR, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

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5 · Who and what money

Authors and funding

14 authors.

Paul A ThompsonCentre for Intellectual and Developmental Disabilities, University of Warwick, Coventry, UK.ORCID 0000-0001-9940-6913
Eleanor SummersCentre for Intellectual and Developmental Disabilities, University of Warwick, Coventry, UK.
Sue CatonManchester Metropolitan University, Manchester, UK.
Nikita HaydenUniversity of Sheffield, Sheffield, UK.
Stuart ToddUniversity of South Wales, Newport, UK.ORCID 0000-0003-1640-2111
Edward OloidiUniversity of South Wales, Newport, UK.
Laurence TaggartUlster University, Coleraine, UK.
Rosemary KellyInstitute of Nursing and Health Research, University of Ulster, Jordanstown, UK.
Jill BradshawUniversity of Kent, Canterbury, UK.ORCID 0000-0002-0379-8877
Roseann MaguireUniversity of Glasgow, Glasgow, UK.
Andrew JahodaUniversity of Glasgow, Glasgow, UK.ORCID 0000-0002-3985-6098
Chris HattonManchester Metropolitan University, Manchester, UK.ORCID 0000-0001-8781-8486
Richard P HastingsCentre for Intellectual and Developmental Disabilities, University of Warwick, Coventry, UK.ORCID 0000-0002-0495-8270
Coronavirus and People with Learning Disabilities Study Team

Funding

Department for Health and Social Care (National Institute for Health Research)National Institute for Health and Care ResearchNational Institute for Health Research Policy Research Programme NIHR204404UK Research and Innovation (Medical Research Council)
6 · The paper itself

Abstract

backgroundLongitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.

methodsFamily carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020-2022). Growth models were used to determine the change in family-carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories.

resultsOverall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.

conclusionsOverall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.

Indexed as

CaregiversCOVID-19Intellectual DisabilityAdultAgedFemaleHumansLongitudinal StudiesMaleMiddle AgedUnited KingdomYoung AdultCOVID‐19family‐carer wellbeingimpact of caringintellectual disability

Identifiers

PMID39717989
PMCPMC11876487

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.