What is your role within the Academic Collaborative Centre related to people with PIMD?
I am a PhD student affiliated to the University of Groningen and am involved in the Stronger Together (Sterker Samen) project, the aim of which is to improve the quality of life of families with children with PIMD. To this end, we will first seek to establish what constitutes a family’s quality of life and which factors influence that quality of life, as well as finding out what the care and support needs of these families are. We will then take the insights gained and work together with families and healthcare professionals to create products designed to improve a family’s quality of life.
What do you hope to achieve?
I will feel that I have succeeded if our research actually leads to a positive, lasting improvement in the lives of families among our target group. I am also interested in gaining a deeper understanding of what ‘quality of life’ actually is and how it means different things to different people.
Related research of Siméon