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...

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Main Authors: Rodham, Karen, Gavin, Jeff, Coulson, Neil S., Watts, Leon
Format: Article
Published: Taylor & Francis 2015
Subjects:
Online Access:https://eprints.nottingham.ac.uk/38831/
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author Rodham, Karen
Gavin, Jeff
Coulson, Neil S.
Watts, Leon
author_facet Rodham, Karen
Gavin, Jeff
Coulson, Neil S.
Watts, Leon
author_sort Rodham, Karen
building Nottingham Research Data Repository
collection Online Access
description 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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spelling nottingham-388312020-05-04T17:02:08Z https://eprints.nottingham.ac.uk/38831/ 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 Rodham, Karen Gavin, Jeff Coulson, Neil S. Watts, Leon 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. Taylor & Francis 2015-02-24 Article PeerReviewed Rodham, Karen, Gavin, Jeff, Coulson, Neil S. and Watts, Leon (2015) 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. Informatics for Health and Social Care, 41 (3). pp. 325-339. ISSN 1753-8165 wiki CRPS information support http://www.tandfonline.com/doi/abs/10.3109/17538157.2015.1008491?journalCode=imif20 doi:10.3109/17538157.2015.1008491 doi:10.3109/17538157.2015.1008491
spellingShingle wiki
CRPS
information
support
Rodham, Karen
Gavin, Jeff
Coulson, Neil S.
Watts, Leon
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic wiki
CRPS
information
support
url https://eprints.nottingham.ac.uk/38831/
https://eprints.nottingham.ac.uk/38831/
https://eprints.nottingham.ac.uk/38831/