{"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}
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.
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.