How do young people themselves feel about taking mental health medication?

Taking mental health medication has quite a significant impact on a child’s life. But how do children and young people actually experience this themselves? Grietje Keller is mapping out these experiences. According to Keller, this is important: “Young people who take medication themselves have valuable insights. It is essential to listen to them.”

“The use of psychotropic drugs is on the rise in general, but the increase is even steeper among young people. RCTs (randomised controlled trials) are carried out to determine whether medication is effective and reduces what people are struggling with. However, these studies are often short-term, and assessments are carried out using a standard questionnaire. We know very little about what medication use actually means for young people.” And that is precisely what is so important, argues Keller.

So does medication stop you from being yourself? Or does it enable you to be who you feel you are?

To find this out, Keller interviews people who look back on their childhoods, during which they took psychotropic medication. “A theme that emerges in various conversations is the degree of control children had over taking medication. One person mentioned that she regretted not being diagnosed at a young age and that, as a result, she missed out on medication as a child. Another had been on medication since the age of twelve and stopped abruptly at eighteen because they found it awful, only to start taking an antidepressant again two years later.

Another theme that emerges in the interviews is ‘identity’. “Some people say: as soon as I take medication, a veil is lifted and I can finally be myself. But others say that they are a different person when on medication. For example, that they are no longer sociable when taking ADHD medication. So does medication prevent you from being yourself? Or does it enable you to be who you feel you are? And there’s no single answer to that; every user’s experience will be very different.”

Keller’s academic career has been multifaceted: twenty years ago, whilst studying for her Master’s in Political Science, she focused on (the disadvantaged position of) women. Around ten years ago, prompted by her own experiences as a service user in the psychiatric system, she shifted her focus to ‘Mad people’ (a reclaimed term). She founded the Perceval Foundation, where she has been organising Mad Studies reading groups for ten years. “There, we read one or more articles on critical psychiatry and discuss them with one another.” Most participants are (former) psychiatric service users themselves. Many participants bring multiple perspectives: as a relative, a care provider, an experience-based worker or an advocate.

“During her reading groups, she got talking to a researcher who was working on her PhD under the supervision of Gemma Blok (Professor of the History of Psychiatry and Medicine). “Gemma was interested in what I was doing with Mad Studies and we decided to start a project together.” 

I noticed that people were very keen to talk about this topic

That project culminated in the award of a booster grant in November 2024. Together with Gemma Blok and Floortje Scheepers, Professor of Innovation in Mental Health Care (UMCU), Keller set about collecting stories about the use of psychiatric medication among young people, with Keller responsible for conducting the interviews. “At the end of the year, we organised a symposium where we focused primarily on sharing experiences with psychotropic medication. The symposium was a great success, and I noticed that people were very keen to talk about this topic.”

This gave the researchers fresh impetus to propose a new project at the 2025 booster drinks event. Luck was on their side, as their names were once again drawn from the hat and they won one of the 2025 booster grants. “One of the key principles of Mad Studies is to listen to the voices of people who are experiencing mental distress themselves. We were, of course, already doing this during the first project by interviewing people about their experiences, but if, as a researcher, you draw your own conclusions from that, you lose the connection with the people you’re researching. The research agency Meetellen Amsterdam also focuses on the voices of the people they study in their research. We asked them to help us with this.” 

Meanwhile, however, Keller’s project had already developed into a PhD programme, which will enable her to explore the experiences of people who have taken psychiatric medication over the next three years. “I hope this will help amplify the voices of people who took psychiatric medication as children or teenagers.”