Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative use of wiki technology

Abstract

Objective: People living with complex regional pain syndrome (CRPS) experience frustration with the lack of knowledge and understanding of CRPS as a pain condition. We report on our attempt to address this issue. Methods: People living with CRPS taking part in a larger study were invited to co-construct a CRPS wiki page that addressed the areas in which they had experienced the most difficulty. A blank wiki page was set up for participants to populate with issues they felt needed to be raised and addressed. Results: Participants failed to engage with the wiki technology. We modified our procedure and completed an inductive analysis of a sister-forum which participants were using as part of the larger study. Six issues of importance were identified. We used the discussion forum threads to populate the themes. Due to a continued lack of engagement with the wiki technology, the team decided to create a suite of leaflets which were piloted with delegates at a CRPS patient conference. Conclusions: Future work should be mindful of the extent to which patients are able and willing to share their experiences through such technology. Striking the balance between patient-endorsed and researcher-driven co-creation of such material is imperative.

• CRPS
• information
• support
• wiki

ACKNOWLEDGEMENTS

We also thank our research participants who contributed to the writing of the leaflets. We would also like to thank Sharon Grieve, and our technical officer Martin Post for their advice and support. We are particularly grateful to Julie Weymouth for her invaluable help in recruitment, and for her advice as expert-patient. Finally, we would like to thank Hannah Heath, our Research Assistant.

FUNDING

We thank the National Institutes of Health Research Health Services Research Programme for funding our study (Ref 10/2000/40).