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在与青少年进行的虚拟概念引出访谈中运用时间线活动:从一项解释性描述性研究中汲取的方法和经验教训,以开发一种患者报告的结局测量工具(GENDER-Q青少年版)

Using a Timeline Activity in Virtual Concept Elicitation Interviews with Youth: Methods and Lessons Learned from an Interpretive Descriptive Study to Develop a Patient-Reported Outcome Measure (GENDER-Q Youth).

作者信息

Kennedy Shelby L, Jack Susan M, Johnson Natasha, Couturier Jennifer, Rae Charlene, Klassen Anne F

机构信息

Department of Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main Street W, Hamilton, ON, L8S 4K1, Canada.

School of Nursing, McMaster University, 1280 Main Street W, Hamilton, ON, L8S 4K1, Canada.

出版信息

Patient. 2025 Sep 15. doi: 10.1007/s40271-025-00770-6.

Abstract

One-to-one interviews and focus groups are used to generate qualitative data about patients' health outcomes and inform the development of patient-reported outcome measures (PROMs). In the development of PROMs for young people, visual elicitation tools can be used with one-to-one interviews and focus groups to enhance the data generation process and data quality. This article aims to (1) provide a detailed description of how visual elicitation tools can be applied in the development of youth-specific PROMs using the GENDER-Q Youth study as an example and (2) share the lessons learned from the GENDER-Q Youth study with PROM developers who are considering using visual elicitation tools in their own virtual qualitative studies. This article discusses processes that took place within the context of a mixed-methods, multi-step study to develop a PROM for youth receiving gender-affirming care called GENDER-Q Youth. Step one was an applied qualitative health research study using an interpretive description approach. Virtual concept elicitation interviews were conducted with transgender and gender diverse youth aged 12-18 years at recruitment using an optional timeline-based visual elicitation tool (i.e., before interviews, youth were invited to create a timeline about their gender-affirming care journeys). The research team navigated ethical and logistical challenges associated with using timeline activities during the data generation process. These challenges occurred during the pre-interview stage (e.g., mailing activity supplies) and during interviews (e.g., incorporating the timeline activity into the interview). Details about the approach used by the research team, challenges faced, and lessons learned are discussed. When conducting one-to-one virtual concept elicitation interviews, visual elicitation tools have the potential to enhance the quality of data generated about participants' outcomes and experiences of healthcare. Visual elicitation tools can also improve the interview experiences of both participants and researchers and are feasible to implement within the context of qualitative PROM development research with young people.

摘要

一对一访谈和焦点小组用于生成有关患者健康结果的定性数据,并为患者报告结局指标(PROMs)的开发提供信息。在为年轻人开发PROMs时,视觉启发工具可与一对一访谈和焦点小组一起使用,以加强数据生成过程和数据质量。本文旨在:(1)以GENDER-Q青年研究为例,详细描述视觉启发工具如何应用于针对青年的特定PROMs的开发;(2)与考虑在自己的虚拟定性研究中使用视觉启发工具的PROM开发者分享从GENDER-Q青年研究中吸取的经验教训。本文讨论了在一项混合方法、多步骤研究的背景下所进行的过程,该研究旨在为接受性别肯定护理的青年开发一种名为GENDER-Q青年的PROM。第一步是一项采用解释性描述方法的应用定性健康研究。在招募时,使用一种可选的基于时间线的视觉启发工具,对12至18岁的跨性别和性别多样化青年进行了虚拟概念启发访谈(即在访谈前,邀请青年创建一条关于他们性别肯定护理历程的时间线)。研究团队在数据生成过程中应对了与使用时间线活动相关的伦理和后勤挑战。这些挑战发生在访谈前阶段(如邮寄活动用品)和访谈期间(如将时间线活动纳入访谈)。文中讨论了研究团队所采用方法的细节、面临的挑战以及吸取的经验教训。在进行一对一的虚拟概念启发访谈时,视觉启发工具有可能提高所生成的关于参与者医疗保健结果和经历的数据质量。视觉启发工具还可以改善参与者和研究人员的访谈体验,并且在针对年轻人的定性PROM开发研究中实施是可行的。

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