Thompson Paul A, Summers Eleanor, Caton Sue, Hayden Nikita, Todd Stuart, Oloidi Edward, Taggart Laurence, Kelly Rosemary, Bradshaw Jill, Maguire Roseann, Jahoda Andrew, Hatton Chris, Hastings Richard P
Centre for Intellectual and Developmental Disabilities, University of Warwick, Coventry, UK.
Department of Social Policy and Society, University of Birmingham, UK.
J Intellect Disabil Res. 2025 Apr;69(4):265-273. doi: 10.1111/jir.13206. Epub 2024 Dec 24.
Longitudinal 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.
Family 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.
Overall, 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.
Overall, 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.
关于新冠疫情期间智障人士家庭照料者的纵向研究非常少见。本研究调查了英国在新冠疫情期间及所有公共卫生限制解除后（2020年12月至2022年末）四个时间点上家庭照料者幸福感的变化轨迹以及照料角色对照料者健康的影响。
智障成年人士的家庭照料者通过一项共同设计的在线调查参与了疫情期间（2020 - 2022年）四个时间点的调查。使用增长模型来确定家庭照料者幸福感（n = 312）的变化、照料角色在整个疫情期间对照料者健康的影响以及与这些结果相关的因素。我们探讨了重度和多重智障（PMID）、被照料者的个人幸福感、被照料者的年龄、被照料者是否与家人同住与家庭照料者幸福感及照料轨迹影响之间的关联。
总体而言，在这段时间内家庭照料者的幸福感有所改善，照料角色对照料者健康的影响有所降低。如果被照料者患有PMID，会使照料者有更高程度的抑郁和压力，从而增加照料角色对照料者健康的影响，但与照料者幸福感无关。同样，被照料者个人幸福感的降低以及照料者对其幸福感的认知也与照料角色对照料者健康和幸福感的影响增加显著相关。没有证据表明被照料者的年龄可预测任何一个结果，对于在家居住是否是任何一个结果的相关因素，研究结果不一。
总体而言，在这段时间内家庭照料者的幸福感有所改善，照料角色对照料者健康的影响有所降低，但被照料者较差的幸福感和复杂需求（以PMID的存在为指标）在疫情期间对家庭照料者有负面影响。
