Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research.

ABSTRACT

PURPOSE: The quality of life (QOL) experiences of children and adolescents living with advanced cancer have been under-explored. Enhancing QOL for this population is a dominant goal of their healthcare yet, there has been little research identifying aspects that impact their QOL. The purpose of this meta-synthesis was to identify themes of QOL informed from the voices of children and adolescents living with advanced cancer. METHODS: This meta-synthesis utilized meta-ethnography to synthesize data from individual studies in order to develop new conceptual understanding of what is important to children and adolescents about their lives when living with advanced cancer. RESULTS: Our analysis identified themes of QOL relevant to children and adolescents with advanced cancer (1) feeling supported and wanting to support others; (2) re-establishing normal; (3) suffering and emotional distress; (4) new perspectives; (5) maintaining autonomy; and (6) awareness of time. These themes differed from more traditional dimensions of QOL often applied to children and adolescents with cancer. CONCLUSION: This research is novel as its developed themes originated from the direct voices and expressed perspectives of children and adolescents living with advanced cancer. This is a significant initial step toward both understanding QOL in this specific context and the measurement of QOL for this population.

How children and adolescents understand the quality of their lives while living with advanced cancer that is difficult to cure is largely unknown and has not been extensively studied. A significant number of children and adolescents will live with advanced cancer however, it is not well-understood how children and adolescents define their quality of life (QOL) and which aspects of their lives feel meaningful to them while living with advanced cancer. This is important as their understanding and perspectives of their QOL might be very different from what their parents and healthcare professionals caring for them might identify as meaningful to their QOL. This research used the voices of children and adolescents with advanced cancer that were included in diverse research studies examining children and adolescents' experiences living with advanced cancer to develop themes of QOL for this group of young people. It was important to focus on their voices as we wanted to know directly from children and adolescents living with advanced cancer what feels meaningful and relevant to their lives. Our research identified aspects of QOL important to children and adolescents with advanced cancer that are different from how QOL is traditionally understood for children and adolescents with cancer. These findings can contribute to enhancing the healthcare of children and adolescents living with advanced cancer by suggesting that children and adolescents with advanced cancer have distinct QOL experiences and needs.