据发表在2020年3月18日《肌萎缩性脊髓侧索硬化症》(ALS)在线期刊上的一项研究显示,有家庭成员患有肌萎缩性脊髓侧索硬化症(ALS)的儿童和青少年,会帮助他们洗澡、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,也没有获得足够的信息神经病学®,医学杂志美国神经病学院。该研究发现,儿童和青少年8至18岁平均每周花费五个小时为其家庭成员提供护理,平均处理12项任务,例如帮助服用药物,帮助进出床和烹饪餐。“与ALS,人们迅速失去照顾自己的致命疾病,对成年人来说,护理可能会强烈要求,但为儿童和青年支付了担任护理人员的关注,”学习作者Melinda S.威斯康星大学密尔沃基博士的卡万豪。“我们的研究发现,青年是公理的所有领域都有错综复杂的。他们觉得孤立,在他们的照顾下几乎没有训练或指导。然而,他们找到了管理他们的照顾负担的方法,并表示帮助他们对自己感觉良好。“对于研究来说,研究人员使用了通过ALS协会的章节发出的在线调查,以识别与患有他们儿童的ALS的人。然后研究人员与孩子们进行了电话采访。研究中共有38名儿童和青少年为与ALS提供护理的儿童和青少年。 The majority were providing care for a parent; 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.