Lee, LE;
Kulnik, ST;
Curran, GM;
Boaz, A;
Ramdharry, GM;
(2023)
Protocol for a hybrid II study exploring the feasibility of delivering, evaluating, and implementing a self-management programme for people with neuromuscular diseases at a specialist neuromuscular centre.
Pilot and Feasibility Studies
, 9
(1)
, Article 4. 10.1186/s40814-022-01231-9.
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Abstract
Background: Self-management support (SMS) forms a central pillar in the management of long-term conditions. It is firmly aligned with UK health policy but there is a paucity of evidence exploring how it is enacted in the context of neuromuscular diseases (NMDs). Bridges is a SMS programme originally developed in stroke. A new version of the programme (Neuromuscular Bridges) has recently been co-designed with people with lived experience of NMD and requires evaluation. The implementation of SMS is inherently complex with potential barriers at the level of the patient, provider, and wider organisation. The success of implementing programmes can be highly dependent on context, indicating a rationale for considering implementation determinants at an early stage. This study aims to explore the feasibility of (1) delivering, (2) evaluating, and (3) implementing Neuromuscular Bridges at a specialist neuromuscular centre. Methods: This study employs a hybrid II design underpinned by Normalisation Process Theory (NPT), which has been used prospectively to inform the implementation plan and will also inform the analysis. The feasibility of delivering, evaluating, and implementing Neuromuscular Bridges will be assessed using a single-arm pre-post design. In terms of delivery and evaluation, we will explore acceptability, demand within the service, performance of outcome measures, recruitment, and retention. Implementation strategies have been selected from a refined taxonomy of strategies, mapped to NPT, and targeted at known barriers and facilitators at the specialist centre that were identified from preliminary stakeholder engagement activities. The impact of the strategy bundle on fidelity, acceptability, appropriateness, and adoption will be evaluated using qualitative interviews, administrative data, surveys, and a notes audit. Conclusions: This this study will provide valuable feasibility data on a co-designed SMS programme for people with NMDs that will be used to inform a larger implementation study, requirements for embedding it in a specialist centre, and rollout to other specialist centres. Using hybrid methodology at the feasibility stage is unusual and this study will provide important insights into the usefulness of taking this approach at this point in the research pipeline. Trial registration: ISRCTN Trial ID: ISRCTN14208138. Date registered: 18/08/2021.
| Type: | Article |
|---|---|
| Title: | Protocol for a hybrid II study exploring the feasibility of delivering, evaluating, and implementing a self-management programme for people with neuromuscular diseases at a specialist neuromuscular centre |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1186/s40814-022-01231-9 |
| Publisher version: | https://doi.org/10.1186/s40814-022-01231-9 |
| Language: | English |
| Additional information: | Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
| Keywords: | Co-design, Implementation science, Neuromuscular diseases, Normalisation process theory, Self-management, Stakeholder engagement |
| 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 |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10166012 |
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