Trajectoires décisionnelles de parents d’un enfant ayant une condition médicale complexe
Medical advances made over the last decades allow many children to survive prematurity, illness or physical trauma. Some survive with chronic health problems that impair the functioning of several organs. Some must deal with minor, moderate or severe physical or intellectual disabilities and are technology-dependent. This has huge consequences for the actors (the child, his parents, his family, members of the healthcare team and professionals), the institutions and the whole society. By focusing on the decision-making trajectory of parents of children with a complex medical condition, we wanted to understand how parents make decisions about their child to improve support for parents decision-making. The complexity of Edgar Morin is the main theoretical basis of the research. We conducted semi-structured interviews with 25 parents (15 mothers and 10 fathers). Key results include the multiplicity of types and decisions objects and the multisystem influence decision-making patterns. The results also show how influences change accross decision-making trajectory for these parents. The results allow us to propose some benchmarks that could improve support for parents exposed to complex decisions about their seriously child.
Parents Decision Child Family Decision-making Children with medical complexity