From Survival to Growth - The Coping Experience of Mothers of Children with Disabilities During a Global Crisis: The Case of COVID-19.
Caregiver stress eased after COVID-19 lockdowns, yet families of adults with profound ID or low baseline wellbeing still carry heavy loads.
01Research in Context
What this study did
Hochman et al. (2025) followed mothers of adults with intellectual disability through the COVID-19 years 2020-2022. They asked how caregiver stress and health worries changed as lockdowns came and went.
The team used online surveys at three time points. They wanted to see if mothers felt better once day centers reopened and routines returned.
What they found
Most mothers reported less stress and fewer health worries by 2022. The feeling of "caregiving is hurting my own health" also dropped.
Yet the small group supporting adults with profound or multiple disabilities saw no easing of stress. Mothers who entered the pandemic with low wellbeing stayed stuck there.
How this fits with other research
Gu et al. (2023) pooled 20 studies and found over half of special-needs caregivers had clinical stress in 2020-21. Yael’s UK sample fits that big picture, but shows stress can fall again when services reopen.
Lu et al. (2026) looked at Chinese parents of autistic children and saw stress keep rising even after lockdowns eased. The difference: UK adults with ID gained back day services, while the Chinese families did not — a country gap, not a true clash.
De Laet et al. (2025) add a tool: teaching positive coping strategies cut depression in caregivers of young adults with ID. Pair their skill-building with Yael’s timing insight and you get a roadmap — reopen services AND teach coping together.
Why it matters
You can tell most families, "It got better once centers reopened," but keep a close eye on two groups: those supporting profoundly disabled adults and those who were already burned out. Schedule extra check-ins, offer respite vouchers, and run brief coping-skills groups. One hour teaching deep breathing or peer support now may prevent a crisis later.
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02At a glance
03Original abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Journal of autism and developmental disorders, 2025 · doi:10.1111/jar.13035