Identifying a conceptual shift in child and adolescent-reported treatment decision making: “Having a say, as I need at this time”

Background Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so. Procedure Using descriptive qualitative research methods, we interviewed 20 children ages 9–17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, “Having a say, as I need at this time” (‘Having a Say’), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed ‘Having a Say’ results. Results Children's contextually related ‘Having a Say’ preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age. Conclusions The ‘Having a Say’ construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. ‘Having a Say’ is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.