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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.

BackgroundThe purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology.MethodsQualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8–17), 11 parents, and 18 survivors of childhood cancer (aged 8–17 at diagnosis).ResultsAll three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups.ConclusionThe findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.

Adult participants play a pivotal role in doctor±parent±child interactions at the general practitioner's (GP's) surgery. The child's opportunities to participate are rather limited and parental speaking for the child is, in a way, institutionally co-constructed. This study aimed at further characterizing the relationships within this triad by developing a typology of doctor±parent±child interactions, which classi®ed adult behavior in terms of supporting versus non-supporting child participation. The child's participation was described in terms of display of involvement and turning for support. Analyses of 105 videos show that in most consultations, both GP and parent displayed nonsupportive behavior. Despite the GPs' initial efforts to involve the child in the interaction, 90% of the consultations ended up in a nonparticipatory way. During this last segment of diagnosis and treatment information, the child's voice was hardly heard, as re¯ected in the minimal involvement displayed and the absence of turning to the parent for support. It is concluded that the bi-directional perspective chosen in this analysis allowed for a better understanding of the underlying mechanisms leading to the stereotypical picture in both literature and actual practice of triadic medical interactions being dominated by both adult participants. The low degree of child participation should not solely be seen as a consequence of adult behavior, but rather as a co-construction of all three participants. The results are discussed from a pedagogical perspective, and implications for medical practice are formulated. #