(PS4-77) Community-driven Innovations in the Development of a Self-advocacy Tool for Youth with Variations in Sex Characteristics

Abstract Text: Variations in sex characteristics (VSC), also known as intersex variations or differences in sex development (DSD), are a broad range of congenital variations affecting human sex differentiation. Young people with VSC often face medical, mental health, and/or gender care complexities, exacerbated by inconsistent and heterogeneous care approaches. Currently, there is no support tool to help youth with VSC voice their care needs and preferences. Therefore, through an iterative, multi-input, community-based participatory process, we developed the Youth Self-Advocacy and Empowerment Tool (Y-SET) to support young people with VSC self-advocate around their care needs and priorities. A diversified panel including parents of youth with VSC, VSC community advocates, and VSC organization leaders (N=31) provided iterative feedback on priorities for the Y-SET. The development process centered the perspectives and priorities of youth with VSC (N = 120) through each step of development and refinement, including through two sets of qualitive interviews and four rounds of cognitive interviews. Through this process, the collaborative community team identified several innovations in the design of a youth VSC self-advocacy tool: 

1. Y-SET terminology automatically adjusts based on the young person’s preferred language for their diagnosis, variation, or identity (e.g., intersex).


2. As teens get older, their reactions to their diagnosis and/or treatment often change from when they were younger or first diagnosed. Therefore, the Y-SET captures both current and past reactions, because past experiences continue to influence their lives and their perspectives on their past experiences can change.


3. Young people have co-developed questions such that they do not imply a problem or assume shame, while also not avoiding important topics that may be emotionally challenging.


4. Young people identified that more sensitive topics require humanizing language as an introduction to the questions, moving away from the typical “neutral tone” often used in most measures. 


5. Some key items cannot be adequately expressed with Likert-style ordinal responses alone; this highlights the need to move beyond standard psychometric design to address questions where a single ordinal direction may not fully capture youth priorities. 


6. Young people underscored the importance of asking about their relationship with each parenting figure and sibling separately, as these relationships can vary greatly in terms of family responses to VSC. 


7. To appropriately bridge from age 11 into young adulthood, more mature questions and content (e.g., related to sexuality) allows youth to opt in or out based on their self-perceived developmental status. 

As a future direction, the community-refined Y-SET will be administered to a large and diverse sample of youth and young adults with VSC to study its psychometrics and to calibrate the tool for equitable use across the heterogeneous VSC population. Ultimately, the Y-SET is intended to be used in clinical settings and to be publicly available to support youth self-advocacy in the community. Additionally, it is also designed to be used as a clinical research tool.