Valderrama Alena, Nikièma Béatrice, Forgeot d'Arc Baudouin, Guerrero Lucila, Giroux Mathieu
Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, QC, Canada.
Sainte-Justine University Hospital and Research Centre of Sainte-Justine Mother and Child University Hospital Center, Montreal, QC, Canada.
Front Psychol. 2024 Jul 31;15:1320816. doi: 10.3389/fpsyg.2024.1320816. eCollection 2024.
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.
自闭症患者的照料者常常面临“礼貌性污名”，即照料者因与残疾可能被污名化的人有关联而遭受污名的现象。了解这种污名的影响不仅对照料者的心理健康至关重要，对他们为受抚养者提供的护理质量也很关键。本研究旨在探讨魁北克自闭症患者照料者中的礼貌性污名，考察其普遍性和影响，以确定特别容易受到负面后果影响的群体。
本研究采用横断面在线调查方法，运用配额抽样从194名参与者中收集回复。数据通过计算机辅助网络访谈（CAWI）平台收集。礼貌性污名的影响从照料负担、心理健康和照料者的总体幸福感方面进行衡量。
研究结果显示，照料者经常经历被排斥、孤立以及与工作相关的挑战。值得注意的是，照料者的健康状况低于平均水平，在魁北克报告的健康结果最差。最容易受到负面后果影响的照料者包括女性照料者、45岁及以上的照料者、经济紧张的家庭、需要更高水平支持的儿童的照料者、因自闭症受抚养者而孤立的照料者，以及那些自己或孩子遭受以排斥形式出现的污名化的照料者。有趣的是，60%的受访者表示照料负担“一点也不”到“有点”困难，这引发了对随着时间推移可能减轻照料挑战的因素的疑问。
礼貌性污名的负面后果因某些风险因素和个体特征而异。本研究强调了针对性公共政策和干预措施的必要性，特别是针对那些在照料负担、整体健康和心理健康方面经历礼貌性污名负面影响风险较高的人群。通过为这些优先群体量身定制资源和支持，我们可以更好地应对自闭症患者家庭面临的挑战。
