根据2020年3月18日发表在《美国医学杂志》网络版上的一项研究，家庭成员患有肌萎缩性侧索硬化症(ALS)的儿童和青少年可以帮助洗澡、穿衣、吃饭和所有类型的护理活动，但他们可能没有接受过有关这种疾病的培训或足够的信息神经学®的医学杂志美国神经学学会．研究发现，8到18岁的儿童和青少年平均每周花5个小时照顾家人，处理平均12项任务，如帮助服药、帮助起床和做饭。“肌萎缩性侧索硬化症,一种致命的疾病,人们迅速失去了照顾自己的能力,护理可以很激烈,要求成人,然而,很少有人注意到儿童和青少年作为照顾者,”研究作者说梅林达•卡夫劳夫美国威斯康星-密尔沃基大学的博士。“我们的研究发现，年轻人错综复杂地参与到护理的各个领域。他们感到孤立，在护理方面几乎没有训练或指导。然而，他们找到了管理护理负担的方法，并表示帮助他人让他们自我感觉良好。”在这项研究中，研究人员通过肌萎缩性脊髓侧索硬化症协会(ALS Association)的分支机构进行了一项在线调查，以确定那些与自己的孩子生活在一起的ALS患者。研究人员随后对这些孩子进行了电话采访。共有38名儿童和青少年参与了这项研究，他们为ALS患者的家人提供照顾。大多数是在照顾父母一方; 18 percent were helping with a grandparent, aunt or cousin. The majority of the adults said they relied on children for help with care due to cost and inability to pay for outside help. Adults and youth expressed both positive and negative feelings about the care, with adults saying they appreciate the care and are grateful, but some also felt sad or “a burden.” Most of the youth said that providing care made them feel good about themselves, but also that they felt guilty when they were not helping. Of the youth, 68% said they needed more information about ALS, 50% said they wanted to connect with other people their age to talk about ALS, 50% said it was difficult to explain ALS to their friends and 39% said they had concerns about talking about ALS with other family members. The majority of youth said they participated in activities to help them deal with being a caregiver, such as being active, playing video games or talking with friends. “These results really highlight the need for training and support for these young caregivers,” Kavanaugh said. “Health care providers need to start asking if children are helping with care and provide them with information and access to opportunities for respite and other care services.” In addition to its small size, a limitation of the study was that all families were connected to chapters of the ALS Association, so they may be different than others who do not have access to services through the organization. Also, the majority of participants were white people, so the results may not represent other groups. Kavanaugh noted that it’s possible that adults were in the room when the youth were completing the phone interview, which may have influenced their responses. The study was supported by the ALS Association.
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