Narratives of Young People Living with Cystic Fibrosis (CF)

Abstract

Background and aims: Cystic Fibrosis (CF) is the most common genetic, life threatening disorder in the UK (Cystic Fibrosis Trust, 2010). Given the trajectory of the illness, adolescence may be a particularly challenging period, during which young people become more aware of differences from peers, and are faced with the task of balancing increasing illness demands with the drive to aspire to developmental goals. Nevertheless, little research specifically explores how young people with CF reconcile their illness experiences with the emerging sense of self. In an attempt to address this gap in the literature, this study sought to hear the narratives of young people with CF with reference to the local and broader contextual factors influencing their construction, with the aim to further understanding, inform clinical practice and improve support for young people with CF. Methodology: A qualitative approach was employed. A purposive sample of six participants diagnosed with CF and aged between 12 and 16 years was recruited. Participants were asked to take photographs of their experiences of life as a young person with CF which were used alongside a semi-structured topic guide in individual interviews to explore the young person’s narratives. The interviews were audio-recorded, transcribed, and analysed using a narrative approach to explore both what was said and how it was told.Analysis and Findings: The researcher’s global impressions of each person’s narratives, along with details of the local context of the interview were presented. Following this, similarities and differences across the narratives were considered with particular attention to how the main storylines were interwoven with participants’ emotional experiences, the identity work taking place through the narrative, and the broader narratives available to them. It emerged that (i) CF was perceived as part of participants’ normality which they had grown accustomed to over time, (ii) participants drew on cultural narratives to position themselves as normal teenagers, to maintain a positive sense of self, though also leading them to minimise difficulties and distress, and (iii) participants continued to position themselves within the norm as they talked of their futures, describing similar hopes to their peers, and again played down concerns about how CF might impact on their futures. These findings are discussed with reference to the clinical implications, strengths, and limitations of the methodology, and directions for future research.