招募智障儿童家庭参与健康研究的挑战和最佳实践。

IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Journal of Intellectual Disabilities Pub Date : 2024-05-16 DOI:10.1177/17446295241255178
Morgan MacNeil, Britney Benoit, Timothy Disher, Aaron J Newman, Marsha Campbell-Yeo
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引用次数: 0

摘要

在过去二十年里,人们对智障儿童的研究越来越感兴趣。然而,与神经正常儿童相比,对智障儿童群体具有代表性和普遍性的研究数量仍然相当滞后,这主要归因于参与者的参与和招募问题。与吸引和招募这类人群相关的挑战和障碍包括:缺乏可提供坚实知识基础的研究、伦理考虑、家长态度、家庭承诺和组织把关。研究人员可以使用参与式研究方法、尊重儿童的同意权并与家长合作,让儿童及其家庭参与其中。招募策略包括与组织合作、与家长和患者伙伴合作以及使用远程方法。采用有实证依据的参与和招募策略,可为研究领域带来巨大的社会和科学价值,确保这一代表性不足的人群公平地受益于研究成果。
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Challenges and best practices for recruiting families of children with intellectual disabilities for health research.

Research focused on children with intellectual disabilities has been of increasing interest over the last two decades. However, a considerable lag in the amount of research that is representative and generalizable to this population in comparison to neurotypical children remains, largely attributed to issues with participant engagement and recruitment. Challenges and barriers associated with engaging and recruiting this population include lack of research to provide a sound foundation of knowledge, ethical considerations, parental attitudes, family commitments, and organizational gatekeeping. Researchers can engage children and their families using participatory research methods, honouring the child's right to assent, and collaborating with parents. Recruitment strategies include partnering with organizations, working with parent and patient partners, and using remote methods. Employing evidence-informed engagement and recruitment strategies may provide substantial social and scientific value to the research field by ensuring that this underrepresented population benefits equitably from research findings.

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来源期刊
CiteScore
3.40
自引率
13.30%
发文量
82
期刊介绍: The principal aim of the journal is to provide a medium for the exchange of best practice, knowledge and research between academic and professional disciplines from education, social and health settings to bring about advancement of services for people with intellectual disabilities. The idea of a practice-led journal is both exciting and timely. This journal serves as a medium for all those involved with people with intellectual disabilities to submit and publish papers on issues relevant to promoting services for people with intellectual disabilities.
期刊最新文献
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