Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia

Journal article

McLaughlin, P., Hurley, M., Chowdary, P., Khair, K., Smith, C. and Stephensen, D. 2023. Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia. Orphanet Journal of Rare Diseases. 18 (376). https://doi.org/10.1186/s13023-023-02988-9
AuthorsMcLaughlin, P., Hurley, M., Chowdary, P., Khair, K., Smith, C. and Stephensen, D.
Abstract

Background
Improved approaches for chronic pain management are a clinical and research priority for people with haemophilia (PWH). Involving people with lived experience in the design of a complex rehabilitation intervention strengthens the credibility and plausibility of the intervention, particularly in relation to rare disorders. Here we describe using a ‘Theory of Change’ (ToC) dialogue-based stakeholder process to create a programme theory for a telerehabilitation intervention.

Methods
An online workshop was convened and stakeholders received a briefing document in advance. Five stakeholders took part (3 PWH and 2 physiotherapists). At the workshop the group first agreed the overall aim of the intervention. Discussions then identified the resources, activities, barriers and enablers needed to achieve this outcome. All discussions were recorded and annotated by the workshop moderator. Behaviour change techniques were mapped for inclusion in the theory.

Results
A programme theory and narrative report were produced. All stakeholders reviewed these for clarity and to ensure a true refection of the workshop discussions. Agreement was based on how meaningful, well-defined, do-able, plausible, credible, and testable each component was. Stakeholders highlighted the importance of issues unique to PWH. Key components included the need for physiotherapists to be knowledgeable of the condition, a range of exercises that were inclusive of all abilities, and the need for people to feel safe and supported whilst taking part.

Conclusions
Co-developed theory based approaches to intervention design offer an inclusive and transparent way to develop novel and meaningful interventions for people with complex health conditions. The ToC is wholly transparent in its design and content. Together with the identified behaviour change techniques, the theory informs the protocol for a feasibility study evaluating a telerehabilitation intervention. Importantly, it allows the opportunity to revise, adapt and improve the programme theory for further implementation and evaluation

KeywordsRehabilitation; Telerehabilitaion; Haemophilia; Chronic pain; Programme theory; Co-creation; Theory of change
Year2023
JournalOrphanet Journal of Rare Diseases
Journal citation18 (376)
PublisherSpringer Nature
ISSN1750-1172
Digital Object Identifier (DOI)https://doi.org/10.1186/s13023-023-02988-9
Official URLhttps://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02988-9
FunderNational Institute for Health and Care Research (NIHR)
Publication dates
Online01 Dec 2023
Publication process dates
Accepted18 Nov 2023
Deposited20 Dec 2023
Publisher's version
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Open
Output statusPublished
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