Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities.
Anna Katalifos, Mayada Elsabbagh, Afiqah Yusuf and 6 others
PMID 38590546WHAT IT FOUND
Caregivers of youth with disabilities described pandemic coping barriers including lost routines, aggression, service gaps, and school disruption.
Facilitators included stable routines, virtual therapy access, outdoor space, financial supports, and family/community help. Policies often failed to address these specific needs.
Key findings
01Barriers to coping included increased anxiety, depression, and distressed behaviours in youth, alongside caregiver fatigue and limited access to health and social services.
02Facilitators included maintained access to healthcare via virtual means, support from extended family and community, leisure activities, and financial supports like the Canada Emergency Response Benefit.
03There was a discernible misalignment between caregiver-identified needs and Canadian public policies, with few policies addressing specific service losses or mental health risks for this group.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was a non-random convenience sample recruited via social media, which may not represent all caregivers, particularly those without internet access or from marginalized communities. The cross-sectional design captures perspectives from a single point in time (June-July 2020), missing how coping strategies and barriers evolved throughout the pandemic. Open-ended survey responses may not provide the depth of understanding achievable through individual interviews. The policy analysis included policies published after the survey closed, which may not reflect the support available to participants at the time they responded.
Declared interests
The authors declare that financial support was received from the Azrieli Centre for Autism Research, Public Health Agency of Canada, Fonds de recherche du Québec – Santé, and Canadian Institutes for Health Research. The funders had no role in study design, data collection, analysis, or manuscript preparation.
The easy way to misread this
Do not assume these findings represent all caregivers of children with disabilities. The sample was recruited via social media and was not random, potentially excluding families with less digital access or different socioeconomic backgrounds. Additionally, the data reflects a specific early pandemic period and may not apply to current service landscapes.