Abstract
BackgroundGuidelines 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.MethodsCommunication 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.ResultsParticipants 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.ConclusionYoung 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.
Highlights
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
Characteristics of communication in paediatric oncology complicate the execution of these tasks
The aim of this study is to gain insight into the interpersonal, informational, and decisional preferences of participants involved in paediatric oncology, using online focus group discussions
Summary
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. Good communication in health care is generally considered to consist of three broad tasks [1]. The first, interpersonal relationship building, is a result of mutual respect, trust and empathy. It is thought of as prerequisite for the other two elements of good communication: information exchange and participation in the decision-making process to the degree that is desired and feasible [2]. Information provided in paediatric oncology, is generally complex and emotionally charged in nature, and usually involves a degree of uncertainty [5]
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