TY - JOUR
T1 - 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
AU - Lee, Laurence Edward
AU - Kulnik, Stefan Tino
AU - Curran, Geoffrey M.
AU - Boaz, Annette
AU - Ramdharry, Gita M.
N1 - Funding Information:
The authors wish to acknowledge and thank all the NM Bridges lived experience contributors, the team at Bridges Self-Management Limited, and the staff at the Queen Square Centre for Neuromuscular Diseases.
Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project forms part of a PhD studentship funded by Muscular Dystrophy UK Registered Charity No. 205395, Scottish Registered Charity No. SC039445. Financiers have not been part of the project design.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - 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.
AB - 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.
KW - Co-design
KW - Implementation science
KW - Neuromuscular diseases
KW - Normalisation process theory
KW - Self-management
KW - Stakeholder engagement
UR - http://www.scopus.com/inward/record.url?scp=85145936472&partnerID=8YFLogxK
U2 - 10.1186/s40814-022-01231-9
DO - 10.1186/s40814-022-01231-9
M3 - Article
AN - SCOPUS:85145936472
SN - 2055-5784
VL - 9
JO - Pilot and Feasibility Studies
JF - Pilot and Feasibility Studies
IS - 1
M1 - 4
ER -
