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).

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.