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

Paul McLaughlin; Michael Hurley; Pratima Chowdary; Kate Khair; Clive Smith; David Stephensen

doi:10.1186/s13023-023-02988-9

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

Orphanet J Rare Dis. 2023 Dec 1;18(1):376. doi: 10.1186/s13023-023-02988-9.

Authors

Paul McLaughlin^{1

2}, Michael Hurley³, Pratima Chowdary^{4

5}, Kate Khair⁶, Clive Smith⁷, David Stephensen⁸

Affiliations

¹ Katharine Dormandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation Trust, London, UK. p.mclaughlin@nhs.net.
² Department of Academic Haematology, University College, London, UK. p.mclaughlin@nhs.net.
³ Kingston University, London, UK.
⁴ Katharine Dormandy Haemophilia Centre and Thrombosis Unit, Royal Free London NHS Foundation Trust, London, UK.
⁵ Department of Academic Haematology, University College, London, UK.
⁶ Haemnet, London, UK.
⁷ The Haemophilia Society, London, UK.
⁸ School of Medicine, Health and Social Care, Canterbury Christchurch University, Canterbury, Kent, UK.

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 reflection 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.

Keywords: Chronic pain; Co-creation; Haemophilia; Programme theory; Rehabilitation; Telerehabilitaion; Theory of change.

MeSH terms

Exercise Therapy
Hemophilia A*
Humans
Pain Management
Telerehabilitation*

Grants and funding

ICA-CDRF-2017-03-050/Research Trainees Coordinating Centre