Revealing the Most Vulnerable Groups: Courtesy Stigma in Caregivers of Autistic Persons in Quebec.

Abstract

Caregivers of autistic persons often face "courtesy stigma," a phenomenon by which caregivers experience stigma because of their association with a person whose disability may be stigmatized. Understanding the repercussions of this stigma is crucial not only for caregivers' mental health but also for the quality of care provided to their dependent. This study aimed to explore courtesy stigma among caregivers of autistic persons in Quebec, examining its prevalence and impact in order to identify groups that are particularly susceptible to negative outcomes. This study used a cross-sectional online survey methodology employing quota sampling to collect responses from 194 participants. Data were collected using a computer-assisted web interview (CAWI) platform. The impact of courtesy stigma was measured in terms of care burden, mental health, and overall well-being of caregivers. The findings revealed that caregivers frequently experience rejection, isolation, and work-related challenges. Notably, caregivers' health was below average with the lowest reported health outcomes in Quebec. The caregivers who are the most vulnerable to negative outcomes included female caregivers, those aged 45 or older, financially strained households, caregivers of children requiring elevated levels of support, caregivers who isolated due to their autistic dependents, and those who experienced stigmatization directed at themselves or their children in the form of rejection.Interestingly, 60% of respondents reported that the caregiving burden was "not at all" to "somewhat" difficult, raising questions about factors that may mitigate caregiving challenges over time. Negative outcomes from courtesy stigma vary depending on certain risk factors and individual characteristic. This study underscores the need for targeted public policies and interventions, particularly for those at a higher risk of experiencing the negative effects of courtesy stigma on the burden of care, overall health, and mental health. By tailoring resources and support for these priority groups, we can better address the challenges faced by families of autistic persons.