title: 'I've got to prioritise': being a parent with cystic fibrosis.
abstract: Due to advances in earlier diagnosis and treatment, the life expectancy of a person born with cystic fibrosis (CF) has increased. Therefore, more people with CF are becoming parents but the psychological understanding of CF has lagged behind advances in medical treatment; there is very limited applied psychological research on which parents and professionals can draw when considering issues of parenting in this context. This qualitative research explored how mothers and fathers with CF experience and manage the dual roles of being a parent and living with CF. The aim was to facilitate development of an understanding of experience rather than test existing theory. A qualitative methodology was chosen as it allowed participants to reflect openly on their individual experiences. Nine participants completed semi-structured interviews either in their own homes or a clinic base which examined parenting, CF and the interaction between the two roles. Four participants were male and five were female with an age range of 21-50. Interpretive Phenomenological Analysis was used to interpret the participants' accounts and generate super-ordinate and master themes. 'Being a parent on compressed time' was the super-ordinate theme which reflected the challenge of parenting within both a limited life trajectory and a complex treatment regime with daily adherence and time pressures. The findings have implications for parents with CF, those considering parenting and for health professionals working in CF services whose guidance needs to be grounded in an evidence-base. Further research is needed to explore the experiences of parents within different family structures, parents who have had a transplant and the perspectives of others in the wider system in which parents with CF are located.
authors.affiliation: a Clinical Psychologist , Cardiff and Vale University Health Board, Cancer Services, University Hospital Wales, Heath Park , Cardiff CF14 4XW , UK.
authors.forename: Hazel
authors.initials: H
authors.lastname: Barker
authors.affiliation: b Consultant Clinical Psychologist/Academic Director of South Wales Doctoral Programme in Clinical Psychology , Cardiff and Vale University Health Board, Cardiff University, Clinical Psychology , 11th Floor, School of Psychology, Tower Building, 70 Park Place, Cardiff CF10 3AT , UK.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Moses
authors.affiliation: c Consultant Clinical Psychologist, Cardiff and Vale University Health Board, Nephrology & Transplant, Psychology & Counselling Department , Pentwyn Dialysis Unit , Cardiff , UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: O'Leary
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research
keywords: Cystic fibrosis; Interpretative Phenomenological Analysis; fathers; mothers; parents; qualitative