You Have to Be Courageous

Leukaemia brought my son’s (Pim) and our family life to a standstill. The hospital world took over our everyday life, and we had to adapt. This all had a great social-emotional impact on the whole family. It was only after Pim's death that I started working as an expert-by-experience for a better treatment of future patients. That was after I wrote a book entitled ‘Superbro’. Tineke Abma asked me to become a patient-research partner in a Participatory Action Research (PAR) project in the hospital. The aim was to improve patient care through a dialogical learning process among patients, family members, nurses and doctors. This led to a collaboration with the department where my son had been treated. Along the way I learned it is important to be courageous in a context where professionals typically respond with technical solutions to fix problems. As a result, my family and many other families felt on their own to grief and mourn about what was lost and could not be repaired. In the PAR project we created a safe space to share these experiences with nurses and doctors. One of the best experiences was when I heard from other patients that things had improved at the hospital.