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招募智障儿童家庭参与健康研究的挑战与最佳实践

Challenges and best practices for recruiting families of children with intellectual disabilities for health research.

作者信息

MacNeil Morgan, Benoit Britney, Disher Timothy, Newman Aaron J, Campbell-Yeo Marsha

机构信息

School of Nursing, Dalhousie University, Halifax, NS, Canada.

MOM-LINC Lab, IWK Health, Halifax, NS, Canada.

出版信息

J Intellect Disabil. 2024 May 16;29(3):17446295241255178. doi: 10.1177/17446295241255178.

Abstract

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.

摘要

在过去二十年里,针对智障儿童的研究越来越受到关注。然而,与神经典型儿童相比,针对这一人群的具有代表性且可推广的研究数量仍存在相当大的滞后,这在很大程度上归因于参与者参与和招募方面的问题。与吸引和招募这一人群相关的挑战和障碍包括缺乏为知识提供坚实基础的研究、伦理考量、家长态度、家庭责任以及组织把关。研究人员可以采用参与式研究方法,尊重儿童的同意权,并与家长合作,从而让儿童及其家庭参与进来。招募策略包括与组织合作、与家长和患者合作伙伴合作以及使用远程方法。采用基于证据的参与和招募策略,通过确保这一代表性不足的人群公平受益于研究结果,可能会为研究领域带来巨大的社会和科学价值。

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