Parent-to-Child Information Disclosure in Pediatric Oncology

Despite professional consensus regarding the importance of open communication with pediatric cancer patients about their disease, actual practice patterns of disclosure are understudied. Extant literature suggests a significant proportion of children are not told about their diagnosis/prognosis, which is purported to negatively impact child/family psychosocial adjustment. The present study sought to characterize parent-to-child disclosure practices across child development.

Primary caregivers (n = 301) of pediatric cancer patients aged 3-17 were recruited online or during outpatient infusion appointments to complete an anonymous, online survey about disclosure practices and parent/child/family functioning.

More extensive disclosures were associated with older child age (p < 0.001), more frequent child questions, and greater parental desire for child involvement in medical decision-making (p < 0.001). Immediately salient information like diagnosis, upcoming treatment, and acute side effects was disclosed sooner after diagnosis (median = 1 week) than distal eventualities like prognosis and long-term side effects (median = 2 weeks). Most caregivers believed their child had a right to know about their illness, and would and did better cope emotionally and adhere to treatment. Barriers to disclosure for a minority of caregivers included fears that their child was too young and the caregivers' own lack of preparedness to deal with the prognosis themselves or make the disclosures. Caregiver and child distress were strongly associated (p < 0.001).

Results point to the complexity of illness-related information disclosure and nuances with which recommendations must be approached. The broader family context in which disclosure occurs, as well as when and how information is disclosed, may influence child distress more than the content of disclosures itself.