The experiences and attitudes of family caregivers of adults with intellectual and developmental disabilities at different timepoints in the COVID-19 pandemic.
Gabriel Tarzi, Olivia Mendoza, Yona Lunsky and 1 others
PMID 37120390WHAT IT FOUND
Caregivers surveyed in 2022 reported better wellbeing and self-efficacy than those in 2020, yet two-thirds still felt unsupported and half felt unable to cope.
The improvement did not resolve the crisis of unmet needs. Low scores should not be read as resilience, but as survival under strain.
Key findings
01Nearly two-thirds of caregivers reported lacking sufficient professional support and resources, and over half felt unequipped to cope with pandemic stressors, with no significant difference between the 2020/2021 and 2022 groups.
02Caregivers in the 2022 group reported significantly higher mental wellbeing scores (mean 45.9) and greater self-efficacy across all measured domains compared to the 2020/2021 group (mean 41.9).
03Despite higher wellbeing scores in 2022, 26.7% of that group still met the benchmark for probable clinical depression, as did 44.0% of the earlier group.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study did not track the same individuals over time; it compared two different groups of people at different times, so changes cannot be attributed to individual adaptation. The survey scales for experiences and self-efficacy were adapted rapidly during the pandemic and were not validated. The sample was restricted to caregivers with internet access who could participate in online courses during daytime hours, potentially excluding those with higher stress or lower resources. The participants were predominantly mothers (78.8%) and women (91.9%), limiting generalizability to fathers, siblings, or other caregiver types. Data on the specific diagnoses or support levels of the adults with IDD were not collected.
Declared interests
Funded by the Canadian Institutes of Health Research. The authors declare no conflicts of interest.
The easy way to misread this
Do not interpret the higher wellbeing scores in the 2022 group as evidence that the situation improved for families. The rates of unmet support needs and coping difficulties remained statistically unchanged and high, indicating that the underlying crisis for these families persisted despite the statistical shift in subjective wellbeing.