Evidence map›Paper›PMID 40694295›Full record

ReviewThe patient2025

Prioritizing Participant and Research Team Emotional Safety During Data Generation and Analysis in Qualitative Patient-Reported Outcome Measure Research: Development of a Framework Informed by the GENDER-Q Youth Study.

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

Abstract readReview
PubMed Publisher
In one paragraph

Review in The patient, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Shelby L KennedyDepartment of Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main Street W, Hamilton, ON, Canada. deibersl@mcmaster.ca.ORCID 0000-0002-7135-221X
Susan M JackDepartment of Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main Street W, Hamilton, ON, Canada.
Natasha JohnsonDepartment of Pediatrics, McMaster University, 1280 Main Street W, Hamilton, ON, Canada.
Jennifer CouturierDepartment of Psychiatry, McMaster University, 1280 Main St W, Hamilton, ON, Canada.
Charlene RaeDepartment of Pediatrics, McMaster University, 1280 Main Street W, Hamilton, ON, Canada.
Anne F KlassenDepartment of Pediatrics, McMaster University, 1280 Main Street W, Hamilton, ON, Canada.

Funding

Canadian Institutes for Health Research (CIHR) Sex and Gender Science Chair GSL-171376
6 · The paper itself

Abstract

Conducting applied qualitative health research studies often involves discussion of sensitive topics that may impact the emotional safety of participants and researchers. While generic guidance exists to support researchers in prioritizing participant and researcher emotional safety, specific considerations for conducting virtual qualitative interviews to develop patient-reported outcome measures (PROMs) remain limited. This article provides a framework to support PROM developers in prioritizing participant and researcher emotional safety when conducting virtual qualitative interviews. This framework is informed by the strategies developed and applied in the GENDER-Q Youth study, an interpretive descriptive study to develop a PROM for youth receiving gender-affirming care (GENDER-Q Youth). The GENDER-Q Youth study involved virtual concept elicitation interviews with transgender and gender diverse youth (aged 12 years and older) to understand important care-related experiences and outcomes. The interview data were then used to develop draft scales. Virtual cognitive debriefing interviews were conducted with concept elicitation participants to obtain feedback on the draft scales. Strategies to promote participant and researcher emotional safety were developed and implemented throughout data generation (i.e., concept elicitation and cognitive debriefing interviews) and data analysis. On the basis of knowledge gained from creating and applying safety strategies in the GENDER-Q Youth study, a framework was developed to support researchers in prioritizing participant and researcher emotional safety when conducting their respective virtual PROM development studies. This framework offers considerations to support researchers before data generation (e.g., scheduling interviews when support will be available, should an emotional safety concern arise), during data generation (e.g., conducting check-ins with participants), after data generation (e.g., providing opportunities for the interviewing researcher to debrief), and during data analysis (e.g., conducting check-ins with research team members). This framework can help PROM developers identify threats to emotional safety that may occur before, during, and after virtual data generation and during data analysis and facilitate the development of strategies and plans to mitigate these risks.

Indexed as

EmotionsPatient Reported Outcome MeasuresResearch PersonnelTransgender PersonsAdolescentChildFemaleHumansInterviews as TopicMaleQualitative Research

Identifiers

PMID40694295

What OpenQuestion holds

Textmetadata
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.