BACKGROUND: Children with high-risk brain tumours (HRBTs) and their families face many decisions in which quality of life (QoL) is a factor. Previous QoL research has focused on quantitative measurement, leaving a gap as to what QoL means from a child’s, parent’s and clinician’s perspective.
Ethical guidance and institutional policies call for children to participate in these decisions as appropriate, yet there is little recognition of children’s unique modes of participation.
AIMS: To provide a robust description and understanding of QoL as it emerges during consultations from the perspective of the child with an HRBT, the parents and clinicians, and across the illness trajectory.
METHODS: Mixed qualitative and interactionist methods were employed. QoL dimensions were developed to explore QoL. Thematic analysis and constant comparison were used to reveal similarities and differences between the parents’ (N=24) and clinicians’ (N=14) QoL perspectives. Using the case of a 14-year-old female and taking a fresh approach to participation, including non-verbal language, discourse and conversation analysis were used to uncover the child’s voice in QoL discussions.
RESULTS: The importance of key dimensions of QoL changed for parents and clinicians over the course of the illness as did their ideas about the child’s future and of a normal life. Parents’ and clinicians’ viewpoints diverged as the illness progressed. The child’s voice was co-constructed together with the clinician and the parents. Child-centred behaviours on the part of clinicians and parents facilitated this co-construction.
CONCLUSIONS: The multi-dimensional, subjective and dynamic nature of QoL, pose challenges for the conceptualisation of QoL. Elicitation of children’s own views of their QoL requires an analysis of the triadic interactions in which their views emerge. The results of these analyses provide a foundation for design of education and training for clinicians to manage these complex interactions.