Young patients', parents', and survivors' communication preferences in paediatric oncology: Results of online focus groups

Contains fulltext : 51596.pdf ( ) (Open Access)BACKGROUND: Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. METHODS: Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. RESULTS: Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. CONCLUSION: Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents

Treatment decision making

© 2020, Springer Nature Switzerland AG. Treatment decision making (TDM) is complex due to the varying decisions which have to be made about diagnosis, treatment options, toxicity, and outcomes of treatment. Shared decision making is complicated by the triadic relationship of parent/caregiver, child and clinician typical in pediatric care. Increasing attention on how best to incorporate child and adolescent and young adult (AYA) voices in decision making is described. We review TDM from the various perspectives of those involved in making decisions about treatment, including parents, children, AYAs, family, and the health care team. Those involved in TDM bring with them their individual characteristics that include values, preferences, past experiences, and cognitive abilities. Interwoven with these influences are the person’s environment, social determinants, and relationships. We incorporate into our discussion the available research literature concluding with what is ready for translation into clinical practice and recommendations for future research to fully understand the varying perspectives and factors which influence TDM and the nurse’s important role in supporting children and their families