Lived experiences of cystic fibrosis patients' participation in sport

Abstract

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children (Cystic Fibrosis Canada, 2017). Advances in treatment have increased life expectancy. Children with CF are living longer into adulthood however, complications of CF can impede psychosocial skill development in youth (Grieve, et al., 2011). Sport has been identified as a context to promote Positive Youth Development (PYD; Fraser-Thomas et al., 2005). To date, no empirical studies have explored the complex negotiation of physical, social, and psychological factors of youth with CF participation in sport. The objectives of this study were to: (1) describe the lived experiences of CF patients involved in sport and (2) examine the potential of sport contexts as opportunities for psychosocial development. Narrative inquiry was used to explore the lived experiences of CF patients (Sarbin, 1986). Participants included six adults (3 male) living with CF (ages 18-25 years). Open-ended interview questions facilitated participant narratives of their sport experiences from childhood to present time. Narratives described experiences of sport for youth living with CF. Overall, sport involvement was described as a positive experience that facilitated psychosocial skill development. Participants described conflict between their desire to engage in sport and declining physical ability during adolescence. Participant narratives were negatively impacted if CF was "hidden" to teammates and coaches. Participants discussed the importance of skills developed in sport during the transition from child to adult CF care. Findings will be discussed within the broader context of PYD through sport; potential implications and future directions will be highlighted.