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An interpretative phenomenological analysis of the transition from child to adult services for young people with Cystic Fibrosis and their families in Wales

Bill, Sian 2019. An interpretative phenomenological analysis of the transition from child to adult services for young people with Cystic Fibrosis and their families in Wales. Cardiff University.
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Abstract

The process of transition of care provision from paediatric to adult services can be a stressful time for service users and their families in that it can add to the burden of patients and their families living with a life-limiting illness. This thesis will explore the lived experiences of young people and parents in making this transition between children’s and adult cystic fibrosis (CF) services in Wales. It uses Interpretive Phenomenological Analysis (IPA) which has its focus on the ‘double hermeneutic’, a two stage interpretation process whereby the participant tries to make sense of their world and the researcher tries to make sense of the participant, making sense of their world (Smith 2008). Through the use of semi-structured in-depth interviews, the experiences of participants were sought and analysed using IPA’s layered approach to the data. These layers; the descriptive, the conceptual and the linguistic served to reveal the life world of young people and parents who found themselves disenfranchised from the comfort and perceived safety of children’s services. The data suggest that the meanings of transition were different for the young people who, with one exception, largely saw it as a positive experience. The parent group however reported feelings of loss and exclusion and were often critical of the care offered by the adult service. This apparent conflict was examined and the findings of the study suggest that the philosophical differences in care giving were the site of this tension. The model of family centred care espoused in the children’s service fosters inclusion and cooperation with parents actively involved in care-giving, whilst the patient-centred approach of adult services has its focus on self-efficacy and co-production. The result, for parents, is more of a ‘cliff-edge’ transition while the young people seem to see it more as a ‘rite of passage’ into adulthood. This thesis, which adopted the Bridges Model of Transition (2009) as its conceptual framework, offers new insights into a process which is becoming more commonplace as, what were once terminal, childhood conditions now progress to adult care services. It also offers recommendations for service providers (particularly in child care) to assist in fostering a process of disengagement and re-engagement which will minimise disruption and stress for all those involved.

Item Type: Thesis (Other)
Date Type: Submission
Status: Unpublished
Schools: Healthcare Sciences
Date of First Compliant Deposit: 30 May 2019
Last Modified: 30 May 2019 13:31
URI: http://orca-mwe.cf.ac.uk/id/eprint/122991

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