Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec

• Published in: Canadian journal of public health 2022-12, Vol.113 (6), p.834-845
• Main Authors: Valderrama, Alena, Lajoie, Xanthy, Armstrong, Mylène, Luizar-Obregon, Alexei, Kraus de Camargo, Olaf
• Format: Article
• Language: English
• Subjects: Autism; Availability; CAI; Caregivers; Community involvement; Computer assisted instruction; Coronaviruses; COVID-19; COVID-19 - epidemiology; Disabilities; Disabled Persons; Education; Educational services; Health care; Humans; Medicine; Medicine & Public Health; Pandemics; People with disabilities; Perception; Perceptions; Population; Population studies; Public Health; Quebec - epidemiology; Social interactions; Social support; Special Section on Equity and the COVID-19 Response in Canada: Quantitative Research; Stress; Support services
• ISSN: 0008-4263; 1920-7476
• DOI: 10.17269/s41997-022-00671-3

Objectives To identify the perception of the availability of community support and the support needs of autistic people and people with disabilities, from their own perspectives and from those of their caregivers at the time of the COVID-19 pandemic in Quebec, to assess the association between the available support and the perceived stress levels to evaluate the role of perceived social support as a potential buffer of this association. Methods A total of 315 respondents participated in a 4-min online survey across the province of Quebec by snowball sampling. Community support was defined as availability of adapted healthcare, adapted information, adapted educational services and community services. Results The community support and services during the COVID-19 pandemic were not available or were not sufficiently adapted to their needs. About 40% of autistic people or people with disabilities and 44% of their caregivers perceived their days as being quite stressful or extremely stressful. This is twice the rate of that of the general population in non-pandemic time. Nevertheless, social supports can play a mediating role in attenuating the effects of the absence of adapted services on the stress level of this vulnerable population. Conclusion The non-availability of adapted services was related to an increase in the stress level in this population. Our study adds that other than social support, adapted healthcare/tele-healthcare and in-home support services could reduce the impact of the pandemic on the stress level of autistic people and people with disabilities. Adapted educational services and necessary equipment for online education for people without resources could reduce the impact on the stress level in caregivers. People with disabilities and their caregivers are one of the most vulnerable groups in our society. Public health measures of containment and mitigation need to consider more their specific needs.