针对儿童和青少年的成果测量开展定性概念激发工作的主要启示》(Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People)。

IF 3.4 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Patient-Patient Centered Outcomes Research Pub Date : 2024-05-01 Epub Date: 2024-02-14 DOI:10.1007/s40271-023-00663-6
Samantha Husbands, Paul Mark Mitchell, Joanna Coast
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引用次数: 0

摘要

定性概念诱导可以为儿童和青少年制定有意义的患者报告结果测量方法;然而,针对儿童和青少年所使用的概念诱导方法往往未得到充分报道。本文深入探讨了针对儿童和青少年的概念诱导方法,重点介绍了概念诱导的关键阶段,这些阶段在针对儿童开展研究时具有挑战性或独特性。根据我们为 6-15 岁儿童和青少年制定福祉测量方法的经验,我们详细介绍了我们在定性概念激发工作中所遵循的流程,包括与抽样和招募有关的问题、鼓励儿童和青少年在知情的情况下同意并自由参与概念激发,以及使用创造性和参与性方法来制定测量项目。我们反思了在与儿童和青少年一起进行概念诱导时,在具有挑战性的方面所采取的方法。我们的反思表明,使用现有的链接和在线招募方法有助于避开组织把关人,而使用适当的程序来开发研究信息并获得知情同意,则可以确保研究的包容性,并确保儿童有决定是否参与的自由。我们对创造性和参与性活动进行了调整,以产生测量项目的概念,这表明这种方法可以吸引儿童参与,并有助于让儿童对自己的参与有更大的控制权。通过详细介绍我们的方法,我们希望能为其他研究人员提供有用的资源,同时强调在这一领域透明报告的价值。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People.

Qualitative concept elicitation can develop meaningful patient-reported outcome measures for children and young people; however, the methods used for concept elicitation are often underreported for this population. This paper provides in-depth insight into the methods used for concept elicitation with children and young people, with a focus on key stages of concept elicitation that are challenging or unique to doing this research with children. Drawing on our experiences of developing wellbeing measures for children and young people aged 6-15 years, we detail the processes followed in our qualitative concept elicitation work, covering issues related to sampling and recruitment, encouraging informed assent and freedom over children and young people's involvement in concept elicitation, and the use of creative and participatory methods to develop measure items. We provide reflections on the approaches taken to navigate challenging aspects of concept elicitation with children and young people. Our reflections suggest that using existing links and online recruitment methods can help to navigate organisational gatekeepers, and using appropriate processes to develop study information and obtain informed assent can ensure that research is inclusive and that children have the freedom to decide whether to be involved. Our adaptation of a creative and participatory activity to generate concepts for measure items suggests that such approaches can be engaging and may help to give children greater control over their participation. In detailing our methods, we hope to have developed a useful resource for other researchers, while highlighting the value of transparent reporting in this area.

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来源期刊
Patient-Patient Centered Outcomes Research
Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-
CiteScore
6.60
自引率
8.30%
发文量
44
审稿时长
>12 weeks
期刊介绍: The Patient provides a venue for scientifically rigorous, timely, and relevant research to promote the development, evaluation and implementation of therapies, technologies, and innovations that will enhance the patient experience. It is an international forum for research that advances and/or applies qualitative or quantitative methods to promote the generation, synthesis, or interpretation of evidence. The journal has specific interest in receiving original research, reviews and commentaries related to qualitative and mixed methods research, stated-preference methods, patient reported outcomes, and shared decision making. Advances in regulatory science, patient-focused drug development, patient-centered benefit-risk and health technology assessment will also be considered. Additional digital features (including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations) can be published with articles; these are designed to increase the visibility, readership and educational value of the journal’s content. In addition, articles published in The Patient may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand important medical advances. All manuscripts are subject to peer review by international experts.
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