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Inform Health Soc Care. 2016;41(3):325-39. doi: 10.3109/17538157.2015.1008491. Epub 2015 Feb 24.

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.

Author information

1
a School of Psychology, Sport and Exercise, Staffordshire University , Stoke-on-Trent , UK .
2
b Department of Psychology , University of Bath , Bath , UK .
3
c Division of Rehabilitation and Ageing , University of Nottingham , Nottingham , UK .
4
d Department of Computer Science , University of Bath , Bath , UK.

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.

KEYWORDS:

CRPS; information; support; wiki

PMID:
25710714
DOI:
10.3109/17538157.2015.1008491
[Indexed for MEDLINE]

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