{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,3,12]],"date-time":"2025-03-12T04:13:01Z","timestamp":1741752781441,"version":"3.38.0"},"reference-count":29,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,12,24]],"date-time":"2024-12-24T00:00:00Z","timestamp":1734998400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100014013","name":"UK Research and Innovation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014013","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Longitudinal studies of family carers of people with intellectual disabilities during the COVID\u201019 pandemic have been very rare. This study investigated trajectories of family\u2010carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID\u201019 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Family carers of adults with intellectual disabilities participated through a co\u2010designed, online survey at four time points across the pandemic (2020\u20132022). Growth models were used to determine the change in family\u2010carer wellbeing (<jats:italic>n<\/jats:italic>\u2009=\u2009312) 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\u2010for person's individual wellbeing, the cared\u2010for person's age, whether the cared\u2010for person lived with their family and family\u2010carer wellbeing and impact of caring trajectories.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Overall, family\u2010carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared\u2010for 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\u2010for 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\u2010for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Overall, family\u2010carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared\u2010for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jir.13206","type":"journal-article","created":{"date-parts":[[2024,12,24]],"date-time":"2024-12-24T10:39:38Z","timestamp":1735036778000},"page":"265-273","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID\u201019 Pandemic in the UK: Longitudinal Study"],"prefix":"10.1111","volume":"69","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9940-6913","authenticated-orcid":false,"given":"Paul\u00a0A.","family":"Thompson","sequence":"first","affiliation":[{"name":"Centre for Intellectual and Developmental Disabilities University of Warwick  Coventry UK"},{"name":"Department of Social Policy and Society University of Birmingham  UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eleanor","family":"Summers","sequence":"additional","affiliation":[{"name":"Centre for Intellectual and Developmental Disabilities University of Warwick  Coventry UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sue","family":"Caton","sequence":"additional","affiliation":[{"name":"Manchester Metropolitan University  Manchester UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nikita","family":"Hayden","sequence":"additional","affiliation":[{"name":"University of Sheffield  Sheffield UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1640-2111","authenticated-orcid":false,"given":"Stuart","family":"Todd","sequence":"additional","affiliation":[{"name":"University of South Wales  Newport UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Edward","family":"Oloidi","sequence":"additional","affiliation":[{"name":"University of South Wales  Newport UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurence","family":"Taggart","sequence":"additional","affiliation":[{"name":"Ulster University  Coleraine UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rosemary","family":"Kelly","sequence":"additional","affiliation":[{"name":"Institute of Nursing and Health Research University of Ulster  Jordanstown UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0379-8877","authenticated-orcid":false,"given":"Jill","family":"Bradshaw","sequence":"additional","affiliation":[{"name":"University of Kent  Canterbury UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roseann","family":"Maguire","sequence":"additional","affiliation":[{"name":"University of Glasgow  Glasgow UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3985-6098","authenticated-orcid":false,"given":"Andrew","family":"Jahoda","sequence":"additional","affiliation":[{"name":"University of Glasgow  Glasgow UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8781-8486","authenticated-orcid":false,"given":"Chris","family":"Hatton","sequence":"additional","affiliation":[{"name":"Manchester Metropolitan University  Manchester UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0495-8270","authenticated-orcid":false,"given":"Richard\u00a0P.","family":"Hastings","sequence":"additional","affiliation":[{"name":"Centre for Intellectual and Developmental Disabilities University of Warwick  Coventry UK"},{"name":"Department of Social Policy and Society University of Birmingham  UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"The Coronavirus and People with Learning Disabilities Study 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