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
Morgan MacNeil, Britney Benoit, Timothy Disher, Aaron J Newman, Marsha Campbell-Yeo
{"title":"招募智障儿童家庭参与健康研究的挑战和最佳实践。","authors":"Morgan MacNeil, Britney Benoit, Timothy Disher, Aaron J Newman, Marsha Campbell-Yeo","doi":"10.1177/17446295241255178","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241255178"},"PeriodicalIF":1.5000,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Challenges and best practices for recruiting families of children with intellectual disabilities for health research.\",\"authors\":\"Morgan MacNeil, Britney Benoit, Timothy Disher, Aaron J Newman, Marsha Campbell-Yeo\",\"doi\":\"10.1177/17446295241255178\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":46904,\"journal\":{\"name\":\"Journal of Intellectual Disabilities\",\"volume\":\" \",\"pages\":\"17446295241255178\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2024-05-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Intellectual Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/17446295241255178\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Intellectual Disabilities","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/17446295241255178","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
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。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
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.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信