Caregivers' perception of adults with Down syndrome willingness to participate in research.
Caregivers' perception of adults with Down syndrome willingness to participate in research.
复制标题
护理人员对唐氏综合症成人参与研究意愿的看法。
DOI：
10.1111/jir.12999
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发表时间：
2023
期刊：
影响因子：
--
通讯作者：
Rubenstein,E
中科院分区：
文献类型：
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作者：
Kyprianou,N;Hendrix,J;Hillerstrom,H;Grimm,R;Kirova,A-M;Rubenstein,E
背景历史上，唐氏综合症患者一直被排除在临床研究之外。我们的目标是从照顾唐氏综合症成年人的照顾者的角度评估他们参与研究的兴趣程度。方法我们对 N= 390 名唐氏综合症成人照顾者进行了在线调查，询问他们对研究参与的兴趣和人口统计数据。结果照顾者大多是家庭成员，年龄超过 55 岁，并且是白人。护理人员报告说，他们照顾的患有唐氏综合症的成年人会更愿意参与生理研究，例如涉及健身位（70.2％会参加）、运动（63.3％）或饮食应用程序（53.9％）的研究，而他们不太可能参加涉及更具侵入性的程序的临床试验，例如注射（10.9％）和MRI等实验室检查（32.0％）。我们发现唐氏综合症成人的年龄或性别或护理人员教育水平差异不大。结论我们的调查发现人们对微创研究高度感兴趣，说明观察性研究和生活方式研究的可接受性。可能需要付出更多努力来理解恐惧和参与障碍，并创建工具和方法来提高对更具侵入性研究的兴趣。
BackgroundHistorically, individuals with Down syndrome have been excluded from clinical research. Our objective was to assess the degree of interest adults with Down syndrome have in participating in research from the perspective of the caregivers who care for them.MethodsWe conducted an online survey ofN= 390 caregivers of adults with Down syndrome and asked about interest in research participation and demographics.ResultsCaregivers were mostly family members, older than 55 years, and White. Caregivers reported that the adult with Down syndrome that they cared for would be more comfortable participating in research that was physiological, such as research involving fit bits (70.2% would participate), exercise (63.3%) or diet apps (53.9%), whereas they would be less likely to participate in clinical trials involving more invasive procedures such as injections (10.9%) and laboratory exams like MRIs (32.0%). We found little difference by age or gender of the adult with Down syndrome or by caregiver education level.ConclusionsOur survey identified high interest for less invasive studies, illustrating acceptability of observational and lifestyle studies. More effort may be needed to understand fear and barriers to participation and to create tools and methods to increase interest in more invasive studies.