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The experiences of parents with cystic fibrosis: Staying well to parent and parenting to stay well

Barker, Hazel 2013. The experiences of parents with cystic fibrosis: Staying well to parent and parenting to stay well. ClinPsy Thesis, Cardiff University.
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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 evidence for parents and professionals to draw from when considering issues of parenting in this context. Therefore, the aim of this research was to explore how people with CF experience being a parent, which includes the experiences of both mothers and fathers in relation to staying well to parent and parenting to stay well. Nine participants were recruited purposively from the All Wales Adult Cystic Fibrosis Service. Semi-structured interviews were conducted to explore experiences of parenting, CF and the interaction between the two roles. Interpretive Phenomenological Analysis was used to interpret the participants’ accounts. Three superordinate themes relating to the experiences of parents with CF were identified: Being a parent on compressed time, Being a parent on unexpected time and Being a parent on uncertain time. These themes were considered in relation to the limited evidence base on the psychological experience of living with CF and a systematic review of the qualitative literature relating to parenting with a chronic health condition or disability. The findings have implications for parents with CF, those considering parenting and for health professionals whose guidance needs to be grounded in an evidence-base. Implications for CF services, clinical psychology practice and future research are discussed.

Item Type: Thesis (DClinPsy)
Status: Unpublished
Schools: Psychology
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Uncontrolled Keywords: Parenting, Cystic Fibrosis
Date of First Compliant Deposit: 30 March 2016
Last Modified: 19 Mar 2016 23:24

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