Lee, Laurence Edward;
(2024)
From perspectives to practice: exploring self-management
support for people living with neuromuscular conditions.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Self-management support forms a central pillar in the management of long-term conditions but research exploring its application in neuromuscular disorders (NMDs) is lacking. Neuromuscular Bridges (NM Bridges) is a new self- management programme that has been co-designed alongside people living with NMDs. The aim of this thesis was to explore the lived experience of self- management support and to investigate the feasibility of delivering, implementing, and evaluating the NM Bridges intervention. A multiphase mixed methods approach was employed. Initially, qualitative data were collected from 28 individuals with NMDs to explore their experiences of self-management support. These findings, alongside stakeholder engagement activities, were used to inform the design of ADAPT-NMD, a hybrid II exploration of delivering and implementing NM Bridges. A single-arm pre-post design was used to capture quantitative data from 33 patients and 6 clinicians and was enriched by a qualitative exploration of their experiences. The study was underpinned by Normalisation Process Theory, which was used to inform the study’s design, implementation processes, and analysis. The initial qualitative data revealed the complexity of supporting self- management. Key themes generated were adaptation, psychological burden, and the role of support systems. The ADAPT-NMD study indicates that delivering and implementing NM Bridges is feasible. At 3 months post-baseline, a positive effect was observed on patient-reported outcomes. Quantitative implementation instruments demonstrated positive responses from clinicians delivering the intervention. Triangulation of qualitative and quantitative data indicates that NM Bridges is acceptable, appropriate, and practicable. Comprehensively developed and evaluated programmes for people with NMDs are needed. This research has provided valuable feasibility data on a new co- designed support programme and enhanced understandings of requirements for delivering, evaluating, and implementing it at a specialist neuromuscular centre. Insights from this work can be used to support the delivery of a future evaluation of effectiveness of NM Bridges in a definitive trial.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | From perspectives to practice: exploring self-management support for people living with neuromuscular conditions |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2022. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Department of Neuromuscular Diseases |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10191365 |
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