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.
Latest update: looking for participants
Are you a transgender person between the ages of 18 and 35 and did you have discussions with healthcare providers as an adolescent about starting puberty blockers or hormone treatment? Do you have a DSD or are you intersex and between the ages of 18 and 35? Did you receive care for this before you turned 18? Would you like to participate in a one-off group discussion or individual interview for scientific research? Then we are looking for you.
Within the UNITE project, we are investigating how children, parents and healthcare providers deal with uncertainty when making medical choices. We focus on transgender care and on the care of children and young people with a DSD/intersex children and young people. By the latter, we mean care for people who are born with a variation in sexual development.
Uncertainties may arise, for example, because it can be difficult to predict how children will feel later on about choices made now, what effects the treatments will have, or what the right choice is at that moment. Sometimes it is the children themselves who feel this uncertainty, but sometimes it is also healthcare providers or parents.
To understand how this works, we would like to know more about how (young) adults look back on the care they received as children or young people. What was it like to think about these choices and what was it like to make decisions about the future? Or how do you look back on choices that were made for you? Did uncertainties play a role for you, or for your parents or healthcare providers? Did you discuss it?
Objective
With this knowledge, we hope to help parents, children and healthcare providers deal with these uncertainties in the future. In this way, we can improve the care for these children and young people and have better conversations about uncertainty.
What does the research involve?
If you participate in the research, we will invite you to a group discussion with approximately 3-5 others (duration: approximately 1.5 hours) or an individual interview (duration: approximately 1 hour). The group discussions will be with either transgender people or people with DSD/intersex people. We will decide whether the discussion will be in person or online in consultation with the participants. The group discussion will be led by two researchers. The individual interview will be conducted by one researcher.
Want to participate?
You can participate in this study if you:
- Are a transgender person between the ages of 18 and 35, and
- Before you turned 18, you had conversations because you were considering starting puberty blockers or hormone treatment, or you started these treatments.
Or if you're:
- A person with DSD/an intersex person between the ages of 18 and 35, and
- Received care for this or had conversations about it before you turned 18.
If you would like to know more about the study or would like to participate, please send an email to unite.iqh [at] radboudumc.nl (unite[dot]iqh[at]radboudumc[dot]nl).
About UNITE
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.
