Children's decision making in cancer therapy: A long-term observational study.

ABSTRACT

BACKGROUND: The survival rate of children with cancer has increased substantially in recent years. Shared decision making (i.e., the ability of children with cancer to express their will and share it with medical personnel) has become a particularly important issue. The nature and developmental processes of children's decision making in hospital should be understood. There is, however, a lack of research in this area. METHODS: From January 2016 to March 2018, we conducted a longitudinal qualitative observational study, within the context of medical anthropology, in a hospital pediatric ward in Japan. We investigated the nature and development of decision making among seven children aged 5-12 years with hematologic cancers. We recorded their everyday behaviors, interactions, narratives, and events in the ward. The recording was conducted systematically and it was analyzed thematically using both variable-oriented and process-oriented modes to assess causal relationships between phenomena. RESULTS: The thematic analysis identified three thematic scenes in which children developed their will regarding cancer treatment (1) adjusting to hospital life; (2) forming friendships with other children; and (3) communicating with medical personnel. Sharing information, building trusting relationships, and sharing treatment goals with medical personnel were identified as forms of children's participation in medical decision making. Through cultivated friendships, children's peer groups were sources of resilience and strength in overcoming difficulties in hospital life. CONCLUSIONS: The development of children's decision making in a pediatric oncology ward was based on various rich human relationships. Such relationships should be promoted to improve shared decision making substantially.