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

REFERENCES

• Geertzen JHB, Dijkstra PU, van-Sonderon EL, et al. Relationship between impairment, disability and handicap in reflex sympathetic dystrophy patients: a long-term follow-up study. Clin Rehabil 1998;22:402–12
   Web of Science ®Google Scholar
• Sandroni P, Benrud-Larson LM, McClelland RL, Low PA. Complex regional pain syndrome type I: incidence and prevalence in Olmsted County, a population-based study. Pain 2003;103:199–207
   PubMed Web of Science ®Google Scholar
• Kelmer M, Furnée CA. The impact of chronic pain on life in the household. J Pain Symptom Manag 2002;23:433–41
   PubMed Web of Science ®Google Scholar
• Lauder A, McCabe C, Rodham K, Norris E. An exploration of the support person's perceptions and experiences of complex regional pain syndrome and the rehabilitation process. Musculo Care 2011;9:169–79
   PubMedGoogle Scholar
• Rodham K, McCabe C, Blake D. Seeking support: an interpretative phenomenological analysis of an Internet message board for people with complex regional pain syndrome. Psychol Health 2009;24:619–34
   PubMed Web of Science ®Google Scholar
• Rodham K, Boxell E, McCabe C, et al. Transitioning from a hospital rehabilitation programme to home: exploring the experiences of people with complex regional pain syndrome. Psychol Health 2012; 27:1150–65
   PubMed Web of Science ®Google Scholar
• Rodham K, McCabe C, Pilkington M, Regan L. Coping with chronic complex regional pain syndrome: advice from patients for patients. Chronic Illness 2013;9:29–42
   PubMedGoogle Scholar
• Rodham K. Learning to Cope with CRPS/RSD: putting life first and pain second. Singing Dragon: London; 2014
   Google Scholar
• Von Korff M, Gruman J, Schaefer J, et al. Collaborative management of chronic illness. Ann intern Med 1997;127:1097–102
   PubMed Web of Science ®Google Scholar
• Coulson NS, Malik S. Health-related online support communities. In Yan Z, ed. Encyclopedia of cyber-behavior. Hershey, PA: IGI Global; 2012:671–88
   Google Scholar
• Coulson NS. How do online patient support communities affect the experience of inflammatory bowel disease? An online survey [Short Reports]. J Roy Soc Med 2013;4:1–8
   Google Scholar
• Wilson EAH, Makoul G, Bojarski EA, et al. Comparative analysis of print and multimedia health materials: a review of the literature. Patient Educ Couns 2012;89:7–14
   PubMed Web of Science ®Google Scholar
• van de Belt TH, Faber MJ, Knijnenburg JML, et al. Wikis to facilitate patient participation in developing information leaflets: first experiences. Inform Health Soc Care 2014;39:124–39
   PubMed Web of Science ®Google Scholar
• Kennedy I. Patients are experts in their own field. BMJ 2003;326:1276–7
   PubMed Web of Science ®Google Scholar
• White M, Dorman S. Receiving social support online: implications for health education. Health Educ Res 2001;16:693–707
   PubMed Web of Science ®Google Scholar
• King LA, Miner KN. Writing about the perceived benefits of traumatic events: implications for physical health. Pers Soc Psychol Bull 2000;26:220–30
   Web of Science ®Google Scholar
• Langens TA, Schüler J. Effects of written emotional expression: the role of positive expectancies. Health Psychol 2007;26:174–82
   PubMed Web of Science ®Google Scholar
• Pennebaker JW, Beall S. Confronting a traumatic event: toward an understanding of inhibition and disease. J Abnorm Psychol 1986;95:274–81
   PubMed Web of Science ®Google Scholar
• Pennebaker JW, Colder M, Sharp LK. Accelerating the coping process. J Pers Soc Psychol 1990;58:528–37
   PubMed Web of Science ®Google Scholar
• Stanton AL, Danoff-Burg S, Sworowski LA, et al. Randomised controlled trial of written emotional expression and benefit finding in breast cancer patients. J Clin Oncol 2002;20:4160–8
   PubMed Web of Science ®Google Scholar
• Broderick JE, Junghaenel MA, Schwartz JE. Written emotional expression produces health benefits in fibromyalgia patients. Psychosom Med 2005;67:326–34
   PubMed Web of Science ®Google Scholar
• Archambault PM, van de belt TH, Grajales III FJ, et al. Wikis and collaborative writing applications in health care: a scoping review. J Med Int Res 2013;15:e210
   Google Scholar
• CRPS. Available from: http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome [last accessed 29 Aug 2014]
   Google Scholar
• Complex regional pain syndrome. Available from: http://www.gponline.com/complex-regional-pain-syndrome/pain/symptom-management/article/1186478 [last accessed 29 Aug 2014]
   Google Scholar
• Danis C, Singer D. A wiki instance in the enterprise: opportunities, concerns and reality. In Proceedings of the ACM 2008 conference on Computer supported cooperative work. New York: ACM Press; 2008:495–504
   Google Scholar
• Wagner, C. WIKI: a technology for conversational knowledge management and group collaboration. Commun Assoc Inform Syst 2004;13:265–89
   Google Scholar
• Kriplean T, Beschastnikh I, McDonald DW, Golder SA. Community, consensus, coercion, control: CS*W or how policy mediates mass participation. In: Proceedings of ACM GROUP’07. New York: ACM Press; 2007:167–76
   Google Scholar
• Braun V, Clark, V. Successful qualitative research: a practical guide for beginners. London: Sage; 2013
   Google Scholar
• Goebel A, Barker CH, Turner-Stokes L, et al. Complex regional pain syndrome in adults: UK guidelines for diagnosis, referral and management in primary and secondary care. London: RCP; 2012
   Google Scholar
• Suite of leaflets. Available from: https://sites.google.com/site/profkarenrodham/crps/crps-downloadable-docs [last accessed 27 Jan 2015]
   Google Scholar