Perspectives about key measures of gender dysphoria based on interviews of people with lived experience of gender dysphoria

Background: Gender Dysphoria (GD) is associated with poor mental health and a pre-occupation with gender related thoughts, and can be experienced by neurotypical and autistic people. While researchers have raised critical issues about the three key measures of GD used in the literature, no qualitative research to date has reported the views and opinions of GD measures from neurotypical or autistic people with lived experience of GD.

Methods: The present study conducted semi-structured interviews with 13 participants (mean age = 36.2 years, SD = 20.4; 8 neurotypical/5 autistic) with self-reported lived experience of GD to obtain their views about the three key GD measures.

Results: Reflective thematic analysis was conducted and four themes were developed from the data about the measures: (1) Outdated gender concepts and usage, (2) Issues with the measurement of core GD features, (3) Language issues, and (4) Recommendations to improve GD measures.

Conclusions: The views and opinions of participants with a lived experience of GD about the three most commonly used and reported GD measures in the literature included that the measures would not accurately represent their experience of GD, would not suitably measure their degree of GD, and they would not be inclined to answer all of the questions on the items nor even potentially participate in research using these measures. Future research could utilize their recommendations about measuring GD for research purposes to better represent the preferences of the user group and to be inclusive to a diverse range of people.