神经发育研究入学的动机和障碍。

Developmental neurorehabilitation Pub Date : 2025-01-01 Epub Date: 2024-12-20 DOI:10.1080/17518423.2024.2438969
Hayley G P Huston, Carly A McMorris, Kara Murias
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引用次数: 0

摘要

目的:研究神经发育状况的参与者招募可能是困难的、有限的和资源密集的。在这项研究中,研究人员对照顾者进行了调查,以了解影响他们决定将神经分化儿童纳入研究的因素。方法:通过在线调查收集数据,这些数据来自于注册研究招募数据库的神经分化儿童的照顾者(n = 46)。结果:参与者表示,最重要的动机是帮助其他孩子取得更好的结果,并有助于科学理解。对一些父母来说,个人的好奇心,比如照顾者或孩子更多地了解他们的病情,被认为是重要的。参与者注意到的最具影响力的入组障碍是显著负面副作用的可能性增加。结论:这些发现提供了重要的见解,可以为研究设计和相关研究提供支持,可以克服障碍,确保家庭意识到参与研究的好处。
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Motivators and barriers to neurodevelopmental research enrolment.

Purpose: Participant recruitment for studies investigating neurodevelopmental conditions can be difficult, limited, and resource intensive. In this study, caregivers were surveyed to learn about the factors influencing their decision to enroll their neurodivergent child in research.Method: Data were collected through an online survey from caregivers of neurodivergent children who were signing up for a research recruitment database (n = 46).Results: Participants indicated the most important motives were to help achieve better outcomes for other children and to contribute to scientific understanding. Personal curiosities, such as the caregiver or child learning more about their condition, were identified as important for some parents. The most influential barrier to enrollment noted by participants was a heightened possibility of a significant negative side effect.Conclusion: These findings provide essential insight that can inform study design and associated research support that could overcome barriers and ensure families are aware of the benefits of participating in research.

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