Morrison Elizabeth H, Sorkin Dara, Mosqueda Laura, Ayutyanont Napatkamon
University of California, Riverside School of Medicine, 900 University Avenue, Riverside, CA 92521, United States.
University of California, Irvine School of Medicine, 1001 Health Sciences Road, Irvine, California 92697, United States.
Mult Scler Relat Disord. 2020 Nov;46:102530. doi: 10.1016/j.msard.2020.102530. Epub 2020 Sep 25.
An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.
Through an anonymous telephone survey with the North American Research Committee on Multiple Sclerosis (NARCOMS), we administered the validated Scale to Report Emotional Stress Signs - Multiple Sclerosis (STRESS-MS) and other study measures to 206 U.S. adults who had unpaid caregivers because of MS-related disability.
54.9% of respondents disclosed undergoing some form of mistreatment since first requiring caregiving by a family member or friend, including psychological abuse (44.2%), financial abuse (25.2%), neglect (16.5%), physical abuse (11.2%) or sexual abuse (8.3%). Many had experienced multiple forms of mistreatment. Mistreated respondents reported less social support, more alcohol use, and higher levels of fatigue and cognitive impairment. Daily caregiving increased mistreatment risk. Caregivers with mental illness were 13 times more likely to be abusive or neglectful. Poor premorbid relationships with caregivers nearly tripled mistreatment risk, while any significant alcohol use history by people with MS or caregivers doubled risk.
In a nationwide survey, over 50% of American adults with advanced MS reported mistreatment by caregivers.
据估计，10万名患有晚期多发性硬化症（MS）的美国人面临受虐风险，但我们缺乏关于虐待和忽视的全国患病率数据。我们的目标是确定美国患有晚期MS的成年人中照顾者虐待和忽视行为的发生率和患病率。
通过对北美多发性硬化症研究委员会（NARCOMS）进行的一项匿名电话调查，我们对206名因MS相关残疾而有非付费照顾者的美国成年人进行了经过验证的《多发性硬化症情绪应激症状报告量表》（STRESS-MS）及其他研究测量。
54.9%的受访者透露，自首次需要家庭成员或朋友照顾以来，他们遭受了某种形式的虐待，包括心理虐待（44.2%）、经济虐待（25.2%）、忽视（16.5%）、身体虐待（11.2%）或性虐待（8.3%）。许多人经历了多种形式的虐待。遭受虐待的受访者报告称社会支持较少、饮酒较多，且疲劳和认知障碍程度较高。日常照顾增加了受虐风险。患有精神疾病的照顾者实施虐待或忽视行为的可能性高出13倍。与照顾者病前关系不佳使受虐风险几乎增加两倍，而MS患者或照顾者有任何显著饮酒史会使风险增加一倍。
在一项全国性调查中，超过50%的美国晚期MS成年人报告称受到照顾者的虐待。
