Abstract
Objectives: Quality of life remains an under-explored concept in CF paediatric research. The United Nations Convention on the Rights of the Child (UNCRC) has fundamentally shaped children’s participatory rights in research, emphasising the need to include their voice. Children with cystic fibrosis (CF) must be directly included in assessment of their quality of life. Semi-structured interviews with children with CF and their parents sought the children’s recommendations for key themes for the development of a new quality of life (QoL) disease-specific, self-assessment tool.
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