The Psychosocial Experience of Cystic Fibrosis: An Investigation of Personal Adjustment, Family Relationships, and Wider Community Perceptions of Adolescents and Young Adults with Cystic Fibrosis

Abstract

Affecting one in every 2500 children born in Australia, cystic fibrosis (CF) is a congenital disease which severely affects an individual‟s respiratory and digestive functioning, with a typical presentation including breathing difficulty, recurrent chest infections, unusually salty sweat, infertility, and poor processing of lipids (Cystic Fibrosis Queensland, 2001). In recent years, the prescribed treatment regimens for individuals with CF have improved significantly, greatly increasing the lifespan of this population to around 40 years of age or beyond (Cystic Fibrosis Foundation, 2010); a substantial improvement from an estimate of children with CF surviving to their teens, at best, only three decades ago (Crosier & Wise, 2001). Consequently, the conclusions derived from early research examining the psychosocial adjustment of individuals and families coping with CF may now not be relevant for adolescents and adults with CF (Pfeffer, Pfeffer, & Hodson, 2003). Thus, the aim of the current research was to integrate and apply psychological theories that have been well tested with other chronic illness populations to examine the functioning of families with adolescents and young adults coping with CF.