Parent-child collaboration in health care decision making: perspectives of young people with chronic illness

This study explores the perspectives of young people with chronic illness on their participation in health care discussions and decision making, with a specific focus on the role of parents in facilitating participation. Semi-structured interviews were conducted with 26 participants between the ages of 5 and 18. Participants were recruited from inpatient units at a pediatric hospital. A range of chronic illnesses were represented among members of the sample, including kidney failure, Crohn’s disease, organ transplant, and sickle cell anemia. Following data collection, a focused analysis was conducted of participants’ statements related to parent involvement in the health care decision making process. Salient themes that emerged from analysis of the data reveal a complex and bidirectional process in which young people and parents negotiate children’s participation in making decisions related to their health care. Based on the findings, a collaborative-contextual model of decision making is proposed.