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
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. Method: People living with CRPS taking part in a larger study were invited to co-co...
| Main Authors: | , , , |
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| Format: | Article |
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Taylor & Francis
2015
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| Online Access: | https://eprints.nottingham.ac.uk/38831/ |
| Summary: | 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.
Method: 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. |
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