294 Aspiring to independence: The personal experiences of young people with cystic fibrosis, asthma and healthy controls

Abstract

Objectives To investigate the first person lived experience of young people, noting their accounts of how health affects the aspects of life they value. Methods 23 young people (aged 13–15) were interviewed using a biographical narrative approach starting with the open request, please tell me the story of your life so far, all the events and experiences that were important for you, personally. Young people with cystic fibrosis (CF), asthma and normal health were interviewed. Each subjects' interview transcript was analysed independently in order to develop a theory of the individual and their narrative. The findings from each individual were then compared with particular attention given to contrasting themes between the health groups. Results Young people frequently recalled stories of events and experiences involving enjoyable times with friends and families. Many individuals explicitly and implicitly emphasised a desire to grow in independence. However, it was notable that this journey to independence was substantially more complex for young people with CF than it was for other health groups. The intensive treatment requirements and a sense that at any time health may deteriorate resulting in hospitalisation were given as reasons for making choices to ensure they remained near support and protection. Conclusion Independence was a common aspiration across all groups interviewed. However the extent to which independence was enjoyed varied depending on the health status of the young person. More detailed research is required to explore the barriers to independence faced by young people with CF.