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Capturing and Sharing the Voice and Experiences of Those Who Are Living with Complex Regional Pain Syndrome

Complex Regional Pain Syndrome (CRPS) is difficult to diagnose and is characterised by burning pain in one or more limbs, with 15-20% of patients developing long term disability [1]. The cause is unknown and there is currently no cure. As a consequence, people living with CRPS often turn to the Internet to seek CRPS-related information and support [2, 3]. Furthermore, in my CRPS psychology clinic, patients also expressed their disappointment on discovering that many existing information resources lacked any sense of what it was like for patients to live with the condition.

In response to this shortcoming, my colleagues and I invited people with CRPS to take part in a study that would facilitate the collaborative development of a patient-centred information resource. This study has now been published [4] and in this blog, I want to highlight the challenge of co-creating patient-centred information resources.

In the first instance, participants were invited to join, and interact with one another on a new internet forum. The forum had two functions: first, to familiarise participants with the technology they would use to develop the information resource; and second, to analyse the participants’ interactions to highlight how a support forum is developed ‘from scratch’ [5]. After six months, we introduced the collaborative writing task; the intention was that people with CRPS would develop a patient-centred CRPS Wikipedia page which would complement an existing medically focused page. The task was for participants to work together and identify the issues and content that they wanted to include in the resource. Whilst observing this process the researchers would learn how participants decided and reached on issues of import and their related content). Disappointingly, in spite of attempts to encourage participation, there was little response. So we combined the few suggestions offered with an analysis of the interactions on the forum. Using this information, we drafted leaflets, each of which explained what CRPS is, and highlighted how the target stakeholder could best provide support. Delegates at a patient-centred conference provided further feedback which was incorporated. The final suite of leaflets is now freely available online [6].

In this study, we were able to show that even when research is planned and carefully co-designed with involvement of the target population, things do not always go smoothly and your anticipated outcomes may not be achievable. It was important to remember that the key driver for this research was the patients’ perception that their voice and experience was lacking from much of the existing resources. Although we did not meet our goal of developing a patient-driven information resource (the researchers/clinicians played a more active role than intended), we were able to meet the bigger research goal of providing a patient-endorsed information resource that did capture the patient experience, voice and perspective.

It is clear that we need to learn more about how to empower people living with CRPS (and indeed other conditions) to actively contribute to information resources. In our reading around the area it was striking that for many co-created information resources, it was health professionals who took the lead. Finding a means of encouraging patients to take a more proactive role in the co-creation of information resources, rather than endorsing researcher or practitioner-driven material is, in our opinion, important.

About Karen Rodham

Karen Rodham is a Professor of Health Psychology at Staffordshire University. From 2006 – 2013 she practiced as a Health Psychologist at the Royal National Hospital for Rheumatic Diseases, where she designed and delivered the psychology element to the CRPS programme. She collaborated with Dr Jeff Gavin (PI, University of Bath), Dr Neil Coulson (University of Nottingham) and Dr Leon Watts (University of Bath) on the NIHR Health Services Research funded study (Ref10/2000/40).

Her email is: karen.rodham@staffs.ac.uk; Her website is: https://sites.google.com/site/profkarenrodham/

References

[1] Geertzen, JHB., Dijkstra, PU., van-Sonderon, EL., Goothoff, JW., ten Duis HJ., Elsma, WH. (1998). Relationship between impairment, disability and handicap in reflex sympathetic dystrophy patients: a long term follow-up study. Clinical rehabilitation, 22, 402-412.

[2] Rodham K, McCabe C, Pilkington M, & Regan L (2013). Coping with chronic complex regional pain syndrome: advice from patients for patients. Chronic illness, 9 (1), 29-42 PMID: 22659350

[3] Rodham, K. (2014). Learning to cope with CRPS: Putting life first and pain second. Singing Dragon: London. (ISBN: 978-1-84819-240-9)

[4] Rodham, K., Gavin, J., Coulson, N. & Watts, L. (in press). Development of information leaflets to meet the support needs of people living with Complex Regional Pain Syndrome (CRPS) through innovative use of wiki technology. Informatics for Health and Social Care (doi:10.3109/17538157.2015.1008491).

[5] Rodham, K., Gavin, J., Coulson, N., Watts, L. & Heath, H. (2013). Let me introduce myself: The role of first posts in establishing a common-identity community in an online support forum. Conference on Psychology and Social Harmony, Beijing, 24th May 2013.

[6] https://sites.google.com/site/profkarenrodham/crps


This first appeared as a blog post on www.bodyinmind.org. For author information and comments, click here


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