Uncertainty is a common phenomenon in healthcare that can create challenges for those involved. One example is the care for children with a variation in sex development (intersex children) and children with gender incongruence (transgender children). Intersex is an umbrella term for children whose sex characteristics do not (entirely) match what is socially and medically considered to be typically male or female. In medical terms this is called DSD (Differences of Sex Development). For children with gender incongruence, there is a discrepancy between a person's experienced gender identity and their assigned birth sex.
Although these groups are very different from each other, similar forms of uncertainty come into play in the care for these children. Among these uncertainties, children, parents and healthcare providers need to make decisions. One challenge, for instance, is for children with DSD/intersex variations, where there are calls for delaying non-medically necessary treatments until the child can decide for themselves. But what exactly is ‘medically necessary’, and who gets to decide? And when can a child make their own decisions about treatment?
This last question is also an issue in transgender care. For instance, for an 11-year-old trans girl, what is a good time to start puberty inhibitors, and who is best to decide? In short, questions about gender, autonomy, bodily integrity and the relationship between sex and gender exist in both types of care. The resulting uncertainties are not only medical in nature, but also touch heavily on philosophical, ethical and communicative aspects.
In this project, conversation analysts, ethicists, and psychologists explore how different uncertainties arise in both types of care. We call this project the UNITE project: the goal is to bring different perspectives together ('to unite') and UNITE is largely an abbreviation of 'UNcertainty in Intersex and Transgender care'. Using interview studies and observations of consultations and multidisciplinary meetings, the project studies how caregivers, children and parents deal with uncertainty, how they communicate about it, and what the effects of this are on clinical practice. The ultimate goal is to develop tools to help those involved recognize, discuss, and better cope with uncertainty.
