Dr. Anne de la Croix wint Senior Comenius Fellowship

Parents of children with disabilities have significant experiences and a unique perspective on the communicative and emotional aspect of medical care. In her new project ‘Caring together, learning together: introducing parents of children with disabilities as educational partners’, Dr. Anne de la Croix offers medical students a rich learning experience by introducing these parents as teachers in their courses, thereby going beyond just the clinical knowledge.

For this important shift in focus towards the development of the person behind the doctor, she was awarded a Senior Comenius Fellowship by NRO, accompanied by a €100.000 grant. De la Croix, who works for the team Research in Education at the Faculty of Medicine of the Vrije Universiteit Amsterdam, views this project as her son’s legacy, as he was disabled and tragically passed away last year. We interviewed Dr. de la Croix about her innovative project and found out more about her inspiration, her plans for the future of the project, and the benefits it will provide to students, teachers, and parents.

What is the project “Caring together, learning together: introducing parents of children with disabilities as educational partners” about?

Typically, doctors at the hospital mostly focus on the clinical aspects of a case, often with little time and attention for contact with the patients’ lifeworld. The medical school at the VU is building a new curriculum which prioritizes students being able to see the landscape of care around every patient, the patient journey, and the professions in healthcare outside the hospital walls.

When medical students work with children, they are often very interested in the child, their illness, and their complaints, while the parents are perceived as an annoying “extra person” on the side; they are often overlooked. This project urges students to view the parent as a valuable partner in caring for the child, as they can greatly benefit from the parents’ insights and experiences.

Parents are often the ones taking charge of the daily care required. They are therefore another link in the network of care around the child and should be a partner for the doctor. In this role, parents will be able to tell their story and their parental clinical reasoning, but they will also teach students how (not) to behave when caring for a disabled child. Through listening, students then learn a different, very important perspective, as we have observed in one of our pilot studies.

This type of teaching is potentially very emotional for the parents and the students, as the topic of discussion – a child with a chronic illness or disability – is a complex one. The parents will therefore receive training on how to give correct feedback to students, how to share their feelings without being emotionally drained from it and how to establish boundaries regarding topics they prefer not to talk about.

I will build a database of parents with at least 30 parents who will be able to teach at different levels. This will happen partly at the Faculty of Medicine of the Vrije Universiteit and the Universiteit van Amsterdam, but also in the Amstel Academy course for pediatric nursing, and at the department of child development studies, where some parents are already teaching.

Parent participation can work in various ways, such as in the form of videos, interviews, and classroom visits, depending on what the teachers prefer. Motivated teachers will be matched with a suitable parent for their course and for the goal they want to achieve through this collaboration. The ideal situation would be for the parent to be involved in designing and thinking about their role in the teaching process, as a true educational partner.

How is the project valuable for the parents?

We've conducted a few pilot studies, and parents are always eager to come and work with the students. "This morning while biking to the hospital to teach, I realized that it was my first time going to the hospital for something positive!" said one of the parents, who has a severely disabled son.

Another parent compared the experience to therapy because they finally felt listened to and cared for. The parents feel acknowledged, and they see the project progress, which motivates them. If we can make this a sustainable part of education, it will be a win-win-win situation for teachers, students, and parents.

What inspired you to start this project?

My son, who was disabled, passed away last year, four days after I submitted the proposal for the Comenius fellowship. It was a very shocking experience. Being that parent, that “extra-person” for nearly ten years motivated me to bring this idea to life. I was not sure if I could still do this project after what happened, but I am glad about my decision. My boss told me that my work would be my son's legacy, which gave me purpose.

How did you feel when you won the Senior Comenius Fellowship?

I was very happy to work with an incredibly inspiring team of teachers, doctors, parents, and students. After having talked about it for years, we could finally make something sustainable and meaningful. At first, I was nervous, but now the ball is rolling, and it is very exciting.

How do you think this project will develop in the future?

We already built an experimental phase into the project in which I would like to take it a step further by letting students go to the houses of families with disabled children. Instead of just the parents, we will also focus on the siblings and their development, as well as the special needs equipment necessary in the house. Another innovative idea I want to try is connected to interprofessional learning.

It will consist of building a case around a child with complex care questions and giving it an element where students from different fields can study issues connected to it together, by combining their perspectives. My third idea is to create an internship that students can do at people’s homes or by following a child to their daycare, their therapy, and to their home.

Is there anything that you would like to change?

The biggest danger is failing to do this project sustainably. If you give people an educational role, you need to train them, as well as reward them. So far, that has been missing. I want to implement more extensive training, as well as better rewards for parents, who have received book coupons like the ones we offered thousands of times already. I have some budget left for the parents, which can serve as an actual financial reward for the work they are doing.

If after two years we can confirm that our work has a positive effect on courses, I want to ask the teachers if they can find the financial resources to pay the parents themselves in the future. If you get a grant like this, you can do amazing things with it, but you need to have a plan on how to continue afterwards.

How has the teachers’ and students’ feedback on the project been?

The teachers are very excited about a project with real people who bring real stories. The students are invested in something that can teach them so much about the personal side of medical care. Just like me, they see it as a rich learning experience. Medical practitioners are under a lot of pressure already and might feel burdened by the additional task of dealing with (often emotional) parents in consultations. Having this real-life experience so early on can help them immensely. After this training, even when they are dealing with the most complex medical issues, they will not forget that they are, after all, dealing with people.

This project is different from most education. We are so used to saying “Did you pass? Did you fail?”, while here, the assessment does not matter: You can feel the learning happening in real-time.