Linehan Christine, Birkbeck Gail, Araten-Bergman Tal, Baumbusch Jennifer, Beadle-Brown Julie, Bigby Christine, Bradley Valerie, Brown Michael, Bredewold Femmianne, Chirwa Masauso, Cui Jialiang, Godoy Gimenez Marta, Gomeiro Tiziano, Kanova Šárka, Kroll Thilo, Li Henan, MacLachlan Mac, Narayan Jayanthi, Nearchou Finiki, Nolan Adam, O'Donovan Mary-Ann, Santos Flavia H, Šiška Jan, Stainton Tim, Tideman Magnus, Tossebro Jan
UCD Centre for Disability Studies, University College Dublin, Belfield, Dublin 4, Ireland.
Business Information Systems, O'Rahilly Building, University College Cork, Cork, Ireland.
HRB Open Res. 2022 Apr 4;5:27. doi: 10.12688/hrbopenres.13497.1. eCollection 2022.
A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.
越来越多的证据证明，在疫情期间，新冠病毒病对智力和发育障碍者产生了不成比例的影响。本研究询问了照护者，了解他们对新冠病毒病如何影响他们以及他们所支持的人的看法。2020年8月至9月期间，在12个国家进行了一项在线调查，收集了有关人口统计学、支持措施、信息与培训、感染新冠病毒病的经历、社交距离以及通过DASS12量表衡量的幸福感等方面的信息。本研究报告了参与调查的3754名家庭成员、直接支持专业人员和管理人员的情况。照护者观察到他们所支持的人出现抑郁/焦虑增加、刻板行为、对他人的攻击行为以及体重增加。他们还报告在支持所照护的人获得医疗保健方面存在困难。家庭报告称减少或停止了工作，并在照顾家庭成员时承担了额外费用。直接支持专业人员经历了员工轮班变化、员工缺勤、工作量增加以及临时员工的雇佣。照护者的幸福感显示出高度的压力、抑郁，焦虑程度相对较低。家庭幸福感的最强预测因素是观察到他们所支持的人的情绪变化，而对于直接支持专业人员来说，幸福感的最强预测因素是员工轮班的重新安排和新直接支持人员的增加。研究结果支持了这一观点，即在新冠病毒病大流行期间，这一人群承受了不成比例的负担，反映了在获得医疗保健方面的历史不平等以及其他侵犯人权行为，而这些行为现在受到《联合国残疾人权利公约》的保护。
