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唐氏综合征患儿家长对阿尔茨海默病疫苗接种的看法。

Views of parents of children with Down syndrome on Alzheimer's disease vaccination.

作者信息

Batbold Sarah, Cummings Gabrielle, Riggan Kirsten A, Michie Marsha, Allyse Megan

机构信息

Mayo Clinic Alix School of Medicine, Mayo Clinic, Rochester, MN, USA.

Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN, USA.

出版信息

J Intellect Disabil. 2024 Sep;28(3):759-772. doi: 10.1177/17446295231177787. Epub 2023 May 24.

Abstract

Individuals with Down syndrome (DS) experience increased risk of Alzheimer's disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents' perceptions of a hypothetical vaccine to prevent AD in individuals with DS. A mixed-methods, anonymous survey was distributed via social media. Participants were asked about their experiences with DS and reactions to proposed interventions. Open-ended responses were thematically analyzed using NVivo 12. Of 1,093 surveys initiated, 532 were completed. Of the parents sampled (N = 532), a small majority (54.3%), supported the proposed AD vaccine. All expressed the need for extensive pre-enrollment education and minimal risk. For many, limited research and long-term sequelae were concerns.

摘要

唐氏综合征(DS)患者患阿尔茨海默病(AD)的风险增加。最近的研究表明,一种针对AD的疫苗可能即将问世。家长的支持对于针对这一人群的任何干预措施的成功至关重要,因为患有DS的成年人通常依赖家庭支持。本研究旨在描述家长对一种预防DS患者AD的假设疫苗的看法。通过社交媒体分发了一项混合方法的匿名调查。参与者被问及他们与DS的经历以及对提议干预措施的反应。使用NVivo 12对开放式回答进行了主题分析。在发起的1093份调查中,532份完成。在抽样的家长(N = 532)中,略多数(54.3%)支持提议的AD疫苗。所有人都表示需要进行广泛的预登记教育且风险最小。对许多人来说,研究有限和长期后遗症是令人担忧的问题。

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