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.

[Retracted] Outcome Prediction of Hematologic Malignancy in Critically Sick People

“…P 5 (MZL) defined her most significant hurdle in this regard as the fact that what appeared to be a gastrointestinal condition cannot be addressed with such a simple “zap”; the researcher could, however, recognize that her tumor was not the kind that might simply be “getaway of.” Correspondingly, P 13 (CLL) said it was difficult for the researchers to recognize that they had leukemia. However, the first sign was a lump in the armpit, which also did lead them to believe that “if it were a lump, they could just consider taking it out,” which would have been a “bit of shock” when she discovered it was not feasible because the melanoma was in the blood [ 26 ].…”

“…Correspondingly, P 13 (CLL) said it was difficult for the researchers to recognize that they had leukemia. However, the first sign was a lump in the armpit, which also did lead them to believe that "if it were a lump, they could just consider taking it out," which would have been a "bit of shock" when she discovered it was not feasible because the melanoma was in the blood [26]. Most patients were due to commence treatment immediately after they were diagnosed, understanding the relevance of prior malignancies, while most were initially examined.…”

It hurts to get forced: Children's narratives about restraint during medical procedures

“…Being held against their will during various procedures was found to cause agitation, anxiety, and stress in children 42 . Fear and anxiety are barriers to participation, 48 and a higher degree of participation increases children's consent to planned care 49 . When children are excluded and not involved, they begin to imagine things, become more isolated, and are left alone with their fears.…”

“… 42 Fear and anxiety are barriers to participation, 48 and a higher degree of participation increases children's consent to planned care. 49 When children are excluded and not involved, they begin to imagine things, become more isolated, and are left alone with their fears. Adopting a child's perspective increases the chances of being able to involve the child.…”