Patient Participation in Pediatric Oncology : Providing Children and Adolescents with Opportunities to Develop Autonomy

There is a longstanding debate surrounding children’s and adolescents participation in their healthcare. Regarding this topic, three central concepts emerge: decision-making capacity, participation, and autonomy. Several legislations across the world (e.g., US, UK, Switzerland) acknowledge that autonomy and the capacity to make decisions do not suddenly appear once a minor patient reaches the age of majority. Yet, there still is much debate with regard to when and how children who are ill can and should be included in, for example, communication and decision-making. Very differing attitudes exist on whether children and adolescents have enough experience and knowledge to make such important and often difficult decisions. Even for parents and healthcare professionals in favour of including minor patients, there remains much insecurity due to a lack of empirical evidence.
Decision-making capacity is a concept that is still largely under theorized in pediatric healthcare as most research is carried out on adults. However, it is an important requirement with regard to children’s and adolescents’ ability to transform choices into legally binding decisions. Additionally, it plays a crucial role in children’s overall participation in healthcare since many professional guidelines emphasize the importance of harmonizing the nature and extent of pediatric patients’ participation with their capacities. Empirical research on children’s and adolescents’ participation in healthcare is scarce. Hence, little is known about how they involved in their care, what challenges such practices bring upon the triad of patient, parent, and physician, and how exactly minor patient’s involvement can be adapted to their abilities.
Consequently, the aim of the present research is to closely examine the concepts of decision-making capacity and participation in pediatrics using a combination of theoretical and empirical approaches. This doctoral work provides insight into both practical and conceptual aspects of children’s and adolescents’ autonomy in healthcare.