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
License
File Access Level
Open
Output statusPublished
Permalink -

https://repository.canterbury.ac.uk/item/969q7/using-theory-of-change-to-co-create-a-programme-theory-for-a-telerehabilitation-intervention-for-pain-management-in-people-with-haemophilia

Download files

Publisher's version
McLaughlin 2023.pdf
License: CC BY 4.0
File access level: Open

  • 39
    total views
  • 10
    total downloads
  • 3
    views this month
  • 0
    downloads this month

Export as

Related outputs

Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study.
McLaughlin, P., Chowdary, P., Khair, K., Smith, C., Stephensen, D. and Hurley, M. 2024. Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study. Pilot and Feasibility Studies. 10, p. 128. https://doi.org/10.1186/s40814-024-01550-z
A clinical practice guideline for primary care physiotherapy in patients with haemophilia
Blokzijl, J., Pisters, Martijn F., Apsdahl, M., de Boer, Wypke, Dybvik Matlary, Ruth Elise, Douma‐van Riet, Danielle, de Kleijn, Piet, Lobet, Sébastien, Loughnane, Paula, McLaughlin, P., Bladen, M., Roche, Sheila, Stephensen, D., van Vlimmeren, Leo, van Vulpen, Lize M. D. and Timmer, M. 2024. A clinical practice guideline for primary care physiotherapy in patients with haemophilia. Haemophilia. https://doi.org/10.1111/hae.15065
Survey of the barriers, enablers and preferences to swimming for people with chronic lower back pain
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2024. Survey of the barriers, enablers and preferences to swimming for people with chronic lower back pain. Journal of Aquatic Physical Therapy . 32 (2), pp. 16-24. https://doi.org/10.1097/PXT.0000000000000038
CSP2023: 379 The development of a swimming programme for people with chronic low back pain using a modified Delphi technique
de Vivo, M., Stephensen, D. and Mills, H. 2024. CSP2023: 379 The development of a swimming programme for people with chronic low back pain using a modified Delphi technique. Physiotherapy. 123, p. e202. https://doi.org/10.1016/j.physio.2024.04.252
CSP2023: 217 Barriers, enablers, and preferences to swimming for people with chronic low back pain
Oakes, H., de Vivo, M., Mills, H. and Stephensen, D. 2024. CSP2023: 217 Barriers, enablers, and preferences to swimming for people with chronic low back pain. Physiotherapy. 123, p. e28. https://doi.org/10.1016/j.physio.2024.04.035
Using evidence‐based co‐design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia
Taylor, S., Barker, Karen, Stephensen, D. and Williamson, Esther 2024. Using evidence‐based co‐design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia. Haemophilia. https://doi.org/10.1111/hae.14972
Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel
Laffan, M., McLaughlin, P., Motwani, J., Alamelu, J., Austin, S. Classey, S., Dolan, G., Eales, M., Gooding, R., Grainger, J., Harrison, C., Jones, A., Kelly, A., Oyesiku, L., Rodgers, R., Stephensen, D., Talks, K., Sonecha, S. and Danquah, A. 2024. Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel. Haemophilia. https://doi.org/10.1111/hae.14934
A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts
Benson, G., Bhandari, T., Gomez, K., Holder, K.A., Stephensen, D., Wilkinson, A. and Mangles, S. 2023. A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts. Journal of Haemophilia Practice. 10 (1), pp. 138-154. https://doi.org/10.2478/jhp-2023-0022
Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK
Boyse, S., Fletcher, S., Jones, A., Kohli, R., Mangles, S., Ong, M., Pollard, D., Sivasubramaniyam, S., Stephensen, D., Stoner, N. and Kazmi, R. 2023. Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK. Orphanet Journal of Rare Diseases. 18 (366). https://doi.org/10.1186/s13023-023-02977-y
How to assess, detect, and manage joint involvement in the era of transformational therapies: Role of point-of-care ultrasound
Stephensen, D., DiMinno, M. N. D., Martinoli, C., Pasta, G., DelaCorte-Rodriguez, H., Samy, I., Timmer, M. and Winburn, I. 2023. How to assess, detect, and manage joint involvement in the era of transformational therapies: Role of point-of-care ultrasound. Haemophilia. 29, pp. 1-10. https://doi.org/10.1111/hae.14657
Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP)
Melanie Bladen, Hannah Harbidge, Wendy Drechsler, Gaetan Duport, Ryan Mahaffey, Janjap van der Net, Sofía Pérez-Alenda, Fionnuala Sayers, Karen Strike, Merel Timmer and David Stephensen 2023. Identifying performance-based outcome measures of physical function in people with haemophilia (IPOP). Haemophilia. 29 (6), pp. 1611-1620. https://doi.org/10.1111/hae.14886
Accreditation model of European Haemophilia Centres in the era of novel treatments and gene therapy
Stephensen, D., Boban, A., Baghaei, F., Fijnvandraat, K., Klamroth, R., Miesbach, W., Kavanagh, M., Noone, D., Crato, M. and Peyvandi, F. 2023. Accreditation model of European Haemophilia Centres in the era of novel treatments and gene therapy. Haemophilia. https://doi.org/10.1111/hae.14887
Wearable activity trackers in young people with haemophilia: What needs to be considered?
Stephensen, D., Dodd, C. and Hashem, F. 2023. Wearable activity trackers in young people with haemophilia: What needs to be considered? Haemophilia. 29 (3), pp. 942-945. https://doi.org/10.1111/hae.14790
Twelve-month prevalence of haemarthrosis and joint disease using the Haemophilia Joint Health score: evaluation of the UK National Haemophilia Database and Haemtrack patient reported data: an observational study
Wilkins, R., Stephensen, D., Siddle, H., Scott, M. J.,, Xiang, H., Horn, E., Palmer, B., Chapman, G. J., Richards, M., Walwyn, R. and Redmond, A. 2022. Twelve-month prevalence of haemarthrosis and joint disease using the Haemophilia Joint Health score: evaluation of the UK National Haemophilia Database and Haemtrack patient reported data: an observational study. BMJ Open. 12, p. 3052358. https://doi.org/10.1136/bmjopen-2021-052358
European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients
de Kleijn, P, Duport, G., Jansone, K., Marinić, M., McLaughlin, P., Noone, D., Ramishvili, L., Tollwé, A. and Stephensen, D. 2022. European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients. Haemophilia. 28 (4), pp. 649-655. https://doi.org/10.1111/hae.14566
Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia
Stephensen, D., Wells, A. J., Whitaker, S., Gray, D., Mangles, S. and Hislop-Lennie, K. 2022. Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia. Haemophilia. 28 (2), pp. e46-48. https://doi.org/10.1111/hae.14480
The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study
Stephensen, D., McLaughlin, P., Hurley, M., Chowdary, P. and Khair, K. 2022. The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study. Disability and Rehabilitation. 44 (26), pp. 8420-8428. https://doi.org/10.1080/09638288.2021.2018054
How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study
Stephensen, D., McLaughlin, P., Hurley, M., Chowdary, P. and Khair, K. 2022. How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study. Disability and Rehabilitation. 44 (26), pp. 8412-8419. https://doi.org/10.1080/09638288.2021.2018053
The role of physiotherapy in the new treatment landscape for haemophilia
Sébastien Lobet, Merel Timmer, Christoph Königs, David Stephensen, Paul McLaughlin, Gaetan Duport, Cédric Hermans and Maria Elisa Mancuso 2021. The role of physiotherapy in the new treatment landscape for haemophilia. Journal of Clinical Medicine. 10 (2822). https://doi.org/10.3390/jcm10132822
Haemophilia
Berntorp, E., Fischer, K., Hart, D.P., Mancuso, M.E., Stephensen, D., Shapiro, A.D. and Blanchette, V. 2021. Haemophilia. Nature Reviews Disease Primers. 7 (45). https://doi.org/10.1038/s41572-021-00278-x
Managing flare-ups: The experience of a group of swimmers with persistent low back pain
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2021. Managing flare-ups: The experience of a group of swimmers with persistent low back pain. Physiotherapy. 114 (S1), pp. E220-E221. https://doi.org/10.1016/j.physio.2021.12.208
Pool closures during the COVID-19 pandemic and the impact on low back pain management
Oakes, H., DeVivo, M., Stephensen, D. and Mills, H. 2021. Pool closures during the COVID-19 pandemic and the impact on low back pain management.
Physiotherapy interventions for pain management in haemophilia: A systematic review
Hurley, M., Chowdary, P., Khair, K., McLaughlin, P. and Stephensen, D. 2020. Physiotherapy interventions for pain management in haemophilia: A systematic review. Haemophilia. https://doi.org/10.1111/hae.14030
The importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study
Hashem, F., Corbett, K., Stephensen, D., Swaine, I.L., Ali, H. and Hutchins, I. 2020. The importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study. Health Science Reports. https://doi.org/10.1002/hsr2.186
Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals
Hashem, F., Stephensen, D., Drechsler, W.I., Bladen, M., Carroll, L., Pellatt-Higgins, T. and Saloniki, E.C. 2020. Muscle strengthening intervention for boys with haemophilia: Developing and evaluating a best-practice exercise programme with boys, families and health-care professionals. Health Expectations. 23 (5), pp. 1350-1361. https://doi.org/10.1111/hex.13119
Acceptability and feasibility of an isometric resistance exercise program for abdominal cancer surgery: An embedded qualitative study
Stephensen, D., Hashem, F., Bates, A., Pellatt-Higgins, T., Hobbs, R.P., Hopkins, M., Woodward, H., Stavropoulou, C., Swaine, I.L. and Ali, H. 2020. Acceptability and feasibility of an isometric resistance exercise program for abdominal cancer surgery: An embedded qualitative study. Cancer Control. https://doi.org/10.1177/1073274820950855
Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice
McLaughlin, P., Aspdahl, M., Matlary, R. E. D., Grinda, N., Katzerova, M., O'Mahony, B., Stephensen, D. and Lobet, S. 2020. Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice. Haemophilia. 2021 (27), pp. 284-286. https://doi.org/10.1111/hae.14150
Results of feasibility and safety of randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia
Bladen, M., Carroll, L., Dodd, C., Drechsler, W., Hashem, F., Patel, V., Pellatt-Higgins, T., Saloniki, I. and Stephensen, D. 2020. Results of feasibility and safety of randomised controlled trial of a musculoskeletal exercise intervention versus usual care for children with haemophilia. Haemophilia. 2020 (26), pp. 223-225. https://doi.org/10.1111/hae.14026
Natural history of radiographic first metatarsophalangeal joint osteoarthritis: A nineteen‐year population‐based cohort study
Bowen, C., Gates, Lucy, McQueen, Peter, Daniels, Maxine, Delmestri, Antonella, Drechsler, Wendy, Stephensen, David, Doherty, Michael and Arden, Nigel 2020. Natural history of radiographic first metatarsophalangeal joint osteoarthritis: A nineteen‐year population‐based cohort study. Arthritis Care & Research. 72 (9), pp. 1224-1230. https://doi.org/10.1002/acr.24015
Scoping review: should physiotherapists recommend swimming to patients with low back pain and is further research indicated
Oakes, H., Mills, H., DeVivo, M. and Stephensen, D. 2020. Scoping review: should physiotherapists recommend swimming to patients with low back pain and is further research indicated. Physiotherapy. 107 (S1), p. e190. https://doi.org/10.1016/j.physio.2020.03.278
Telephone or video? A review of telemedicine consultations during the COVID-19 pandemic in a spinal MSK service
Oakes, H., Hussey, J, Stephensen, D. and Oakes, A 2020. Telephone or video? A review of telemedicine consultations during the COVID-19 pandemic in a spinal MSK service.
Treatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study
Scott M.J., Xiang, H., Hart, D.P., Palmer, B., Collins, P.W., Stephensen, D., Sima, C.S. and Hay, C.R.M. 2018. Treatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study. Haemophilia. https://doi.org/10.1111/hae.13616
Postural stability is affected in older males with Haemophilia—a matched control study
Digby-Bowl, C., Brown, M. and Stephensen, D. 2018. Postural stability is affected in older males with Haemophilia—a matched control study. Journal of Functional Morphology and Kinesiology. 3 (1), pp. 10-20. https://doi.org/10.3390/jfmk3010010
Clinical outcome measures for monitoring physical function in pediatric obesity: An integrative review
Mahaffey, R., Morrison, S.C., Stephensen, D. and Drechsler, W.I. 2016. Clinical outcome measures for monitoring physical function in pediatric obesity: An integrative review. Obesity. 24 (5), pp. 993-1017. https://doi.org/10.1002/oby.21468