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Living into adulthood with cystic fibrosis

Stirk, Steven 2020. Living into adulthood with cystic fibrosis. ClinPsy Thesis, Cardiff University.
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This thesis is submitted in partial fulfilment of the requirement for the degree of Doctorate of Clinical Psychology (DClinPsy). It is a portfolio thesis, and consists of two separate papers. Both papers have been prepared in accordance with the author guidelines for submission to the British Journal of Health Psychology. Cystic Fibrosis Cystic fibrosis (CF) is an inherited (genetic) condition that results in excess mucus in all bodily organs. The largest effect is in the lungs, and the majority of people eventually experience lung failure as a result. In order to attenuate the rate of organ damage, people with CF (PwCF) can engage in self-administered health-management regimes (HMRs). These are time-intensive, invasive, and can have a detrimental impact on perceived well-being. The last four decades have seen life expectance improve exponentially, and the current ageing cohort of PwCF (aged 40 years and over) were not expected to survive childhood. Advances in knowledge and understanding have resulted in a linear increase in life expectance with time, which has meant that the life expectance of the ageing cohort has increased as they have aged, resulting in frequent prognostic-shifts. Paper 1: Systematic Meta-ethnography Studies have observed that PwCF’s engagement in HMRs is often inconsistent with the prescriber’s expectation; that is, people typically do not routinely engage with all their treatments. Qualitative studies have attempted to understand the perspectives of PwCF when engaging with their HMRs. A range of methodological approaches have been utilised, resulting in a variance of perspective. Paper 1 sought to synthesise the available qualitative studies, to provide a meta-perspective of the current research in the area and provide new theoretical insights. A meta-ethnographic approach was used to facilitate this objective. The synthesis of 11 papers produced a conceptual understanding of the psychological processes involved in health-related behaviours for adults with CF. Paper 2: Empirical Paper To-date, research has not explored the experiences of PwCF when growing older. Further, there is no understanding about how PwCF adapt to older-age or to frequent prognostic shifts. Paper 2 sought to develop an understanding of both areas using a qualitative semi-structured interview design, and analysed elicited data using a constructivist grounded theory approach. A tentative psychological model was iteratively developed through the simultaneous collection and analysis of qualitative interview data. The model describes a set of psychological processes that offer insight into how the participants have adjusted to new health insults and/or prognostic shifts. These processes are contextualised for the ageing cohort of PwCF, who were born into a time where expectations were bleak, and where the concept of an uncertain mortality has always been present. The model offers an understanding and explanation for how the participant sample responded to such existential uncertainty. Summary Both papers offer tentative, novel theoretical insights which have implications for clinical practice, service development and future research. Although framed from a psychological perspective, these implications extend to any healthcare professional supporting adults with CF.

Item Type: Thesis (DClinPsy)
Date Type: Completion
Status: Unpublished
Schools: Psychology
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Date of First Compliant Deposit: 6 January 2021
Last Modified: 06 Jan 2022 02:30

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