Living a ‘normal life’? Formal and informal supports in the lives of adults with cystic fibrosis

Abstract

Drawing on a small-scale qualitative study of the life experiences of adults with cystic fibrosis (CF) in the UK, this paper explores the formal and informal supports used by the adults to achieve and maintain a lifestyle of their choice. Many adults with CF do not have visible impairments and are faced with deciding to disclose CF so they can claim the formal supports of independent living, or presenting as ‘normal’ and forfeiting the formal supports which may accompany disclosure. At an individual level, both strategies can offer a route to a ‘normal life’. However, wider analysis of independent living and formal and informal supports in the lives of adults with CF is overdue; this paper presents an initial such analysis in the context of the UK coalition government's vision for adult social care and the voluntarism of ‘Big Society’.

Keywords:

• cystic fibrosis
• informal support
• formal social care support
• independent living
• models of disability