E-Thesis 305 views 67 downloads
Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta / CHLOE MORGAN
Swansea University Author: CHLOE MORGAN
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PDF | E-Thesis – open access
Copyright: The Author, Chloe Angharad Morgan, 2024 Distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0)
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DOI (Published version): 10.23889/SUthesis.66036
Abstract
Osteogenesis imperfecta (OI) is a complex condition which requires specialist care. This care is readily available to children but is not available for adults. There are also limited transition services for people with OI, leaving them without support during transition. This novel research study was...
| Published: |
Swansea University, Wales, UK
2024
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| Institution: | Swansea University |
| Degree level: | Doctoral |
| Degree name: | Ph.D |
| Supervisor: | Wilkinson, L.; Edwards, D.; And Merrell, J. |
| URI: | https://cronfa.swan.ac.uk/Record/cronfa66036 |
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| Abstract: |
Osteogenesis imperfecta (OI) is a complex condition which requires specialist care. This care is readily available to children but is not available for adults. There are also limited transition services for people with OI, leaving them without support during transition. This novel research study was aimed at exploring the lived experience of transition, the resulting selfmanagement, and aimed to deliver a resource, providing information and support.This thesis comprises three phases: a qualitative phase, a quantitative phase, and a resource development phase. The qualitative phase primarily involved a focus group and two interviews, to explore issues raised in the literature, including the lack of knowledge and the lack of support for adults with OI. This phase revealed adults with OI struggle to access information and frequently experience dismissal or doubt from healthcare professionals (HCPs), due to a lack of knowledge among HCPs. As a result, adults with OI need to engage in self-management and advocacy, despite the lack of necessary information or skills. The quantitative phase involved an online semi-structured survey aimed at extending our understanding of the qualitative findings but for the wider OI population. The findings were consistent and suggested a connection between missed fractures and poor HCP knowledge.Finally, we iteratively developed a resource that reflected the needs of the OI community, garnering feedback at key points. Despite the small sample sizes, this research has implications for practice and policy, providing a resource which can fill the knowledge gap, support adults with OI and educateHCPs. Future research should explore the efficacy of the developed resource for OI in specific settings. Finally, as a result of findings, a new theoretical model of self-management was developed, future research should further test the model and consider its applicability in the context of other chronic conditions. |
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| Item Description: |
Part of this thesis has been redacted to protect personal information |
| Keywords: |
Osteogenesis imperfecta, Transition, Self-management, Public Health |
| College: |
Faculty of Medicine, Health and Life Sciences |