Psychological Experiences of Children with Brain Tumors at End of Life: Parental Perspectives

Objective: To explore the psychological experiences of children with brain tumors at the end of life. Design: This is a qualitative, retrospective study from a Canadian tertiary level pediatric institution. A subset of parent-report data obtained from three semistructured focus group interviews was used to explore children's experiences during their last month of life. Participants: Twenty-four parents of children diagnosed at less than 18 years of age with a brain tumor, and who died between 2 and 12 years prior, were approached for this study. Results: Three main domains were identified that describe parents' perceptions of their child's psychological experiences: (1) intrapsychic changes-those processes within oneself, and encompassing internal aspects of a person such as cognitive and emotional variables; (2) interpersonal interactions-those interactions between oneself and others, including being treated like their same aged healthy peers and maintaining relationships with others; and (3) posttraumatic growth-those positive personal changes that can occur as the result of a significant struggle or hardship. Discussion: Children who die from brain tumors experience a distinct set of progressive neurologic deteriorations that invariably impact psychological status both positively and negatively. Informed treatments that build on positive growth and minimize negative symptoms are required in order to reduce the suffering incurred to the child and family and to optimize quality of life.