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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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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...

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Published: Swansea University, Wales, UK 2024
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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first_indexed 2024-04-11T10:54:04Z
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spelling v2 66036 2024-04-11 Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta c54b7e9808a2373dc68dab9c01927c04 CHLOE MORGAN CHLOE MORGAN true false 2024-04-11 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. E-Thesis Swansea University, Wales, UK Osteogenesis imperfecta, Transition, Self-management, Public Health 28 2 2024 2024-02-28 10.23889/SUthesis.66036 Part of this thesis has been redacted to protect personal information COLLEGE NANME COLLEGE CODE Swansea University Wilkinson, L.; Edwards, D.; And Merrell, J. Doctoral Ph.D Self-funded (SLC) 2024-06-21T12:47:33.1932134 2024-04-11T11:42:45.4218467 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health CHLOE MORGAN 1 66036__30722__bbf5fd63d8e345ffbc054b1aa64076cb.pdf 2024_Morgan_Chloe.final.66036.pdf 2024-06-21T12:46:38.1724419 Output 9262975 application/pdf E-Thesis – open access true 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) true eng https://creativecommons.org/licenses/by-nc-nd/4.0/
title Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
spellingShingle Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
CHLOE MORGAN
title_short Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
title_full Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
title_fullStr Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
title_full_unstemmed Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
title_sort Investigating the transition from paediatric to adult services and the management of ongoing care of adults with osteogenesis imperfecta
author_id_str_mv c54b7e9808a2373dc68dab9c01927c04
author_id_fullname_str_mv c54b7e9808a2373dc68dab9c01927c04_***_CHLOE MORGAN
author CHLOE MORGAN
author2 CHLOE MORGAN
format E-Thesis
publishDate 2024
institution Swansea University
doi_str_mv 10.23889/SUthesis.66036
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
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description 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.
published_date 2024-02-28T12:47:57Z
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score 11.012678

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