251 Living with cystic fibrosis today: beyond the “Burden of Care”

Abstract

Objectives: The study aimed to re-examine the experience of living with Cystic Fibrosis (CF) today. In recent years there have been rapid and substantive changes in the epidemiology of the disease, from a fatal disease of childhood to a complex, chronic, multisystem disease spanning decades. This has dramatically altered the experience of living with CF. Methods: An inductive, qualitative study design utilising in-depth, unstructured interviews was conducted with young adults with CF and a significant other in their life. The seven young adults and six significant others were aged between 14 and 22 years and 37 and 56 years respectively. Results: Thematic Analysis generated an overarching theme of Burden of Life with CF and six themes. A theme not previously conceptualised within the literature Understanding of CF will be explored in detail here. Within this theme four further subthemes were identified: Personal Understanding of CF, Peer Understanding of CF, Health Professionals Understanding of CF and Society’s Understanding of CF. Conclusion: Understanding of CF was a ubiquitous theme throughout the data and it appeared to be a significant component of living with CF. Having to explain themselves and their condition appeared to be an added weight on top of those already carried. A personal understanding of CF and a CF life changed over time, expanding with maturation and illness progression. However its development was idiosyncratic, following personal experience of illness and treatment, clinical information provided by trusted professionals and heuristic strategies. Implications for treatment compliance and clinical practice are discussed.