Co-creating gender affirming survey questions: A participatory qualitative study

Research with transgender and gender diverse (TGD) communities is sparse, and measures of gender may systematically exclude marginalized groups. Therefore, the purpose of this study was to collaborate with community advisors and participants to develop a new set of affirming survey items to measure gender.

A purposive sample of 37 participants (cisgender (n = 9), transgender and gender diverse (n = 28)) were recruited through participants in existing research and outreach through community partners and networks. We first conducted individual interviews to test and refine gender measurement items and response options. Participants were invited back to participate in one of 5 focus groups to review and refine items. Data analysis was iterative, with ongoing feedback from a Community Advisory Board (CAB).

Participant feedback emphasized the need for clear, resonant wording and the importance of establishing trust and transparency when collecting data about gender and sex assigned at birth. The process yielded co-created questions and response options with an introductory text to affirm confidentiality, the voluntary nature of disclosing, reason for the research, and why it is important to collect this information.

The resulting survey questions assessing gender and sex assigned at birth will be included in a population-based cohort study to establish response rates, describe participant characteristics, and develop new research questions in consultation with our CAB. Our results can also inform the way gender is assessed in clinical settings.

Researchers and health care teams should carefully consider the wording used to assess gender and be aware that safety, rapport, voluntariness, and confidentiality are of paramount importance when collecting data about gender.