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Title: End of pathway cleft surgery : exploring the patient-reported outcomes and young people's decision making experiences
Author: Acum, Michelle
ISNI:       0000 0004 7652 6690
Awarding Body: University of East Anglia
Current Institution: University of East Anglia
Date of Award: 2018
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Objective: Literature exploring how young people (YP) experience cleft surgery at the end of the treatment pathway is limited, both in terms of their reported outcomes and their experience of deciding whether to undergo surgery. This thesis aimed to add to the cleft field by reviewing the patient-reported outcomes (PROs) of end of pathway cleft surgery and exploring YP’s experiences of deciding whether to undergo orthognathic surgery (OS; an end of pathway cleft surgery). Design: A systematic literature search identified studies measuring the PROs of undergoing end of pathway cleft surgery. To explore OS decision making experiences a qualitative design was employed and interviews conducted with twelve YP. Results: The 22 studies measuring PROs varied in methodological quality; most were small scale and none utilised a measure validated in the cleft population, meaning it is hard to draw conclusions about end of pathway cleft surgery from the patient perspective. Thematic Analysis of YP’s accounts resulted in the development of four themes to depict YP’s decision making experiences: 1) Awareness of difference, 2) Committing to the process, 3) Others facilitating decision making and 4) Responsibility on my shoulders. Conclusions: This thesis reveals the difficulty in determining PROs of end of pathway cleft surgery due to the methodological challenges and the heterogeneity of what, how and when outcomes are measured. It demonstrates the contextual, social and personal complexities YP experienced in the process of deciding about OS during a period of developmental transition. Theoretical, clinical and research implications are discussed.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available