Living with CRPS: patients in partnership

Johnston, Colleen M. and Oprescu, Florin I. and Gray, Marion and Wallis, Marianne (2017) Living with CRPS: patients in partnership. In: 2017 IASP Special Interest Group in Complex Regional Pain Syndrome, 31 Aug - 1 Sept 2017, Cork, Ireland.


Introduction: The aim is to describe the partnerships and resources accessed by individuals before and after diagnosis with CRPS. Methods: Individuals around the world who have been formally diagnosed with CRPS were interviewed face to face and on Skype. Interviews and analysis will conclude in July. Results: While waiting for formal diagnosis and treatment, people with CRPS turn to the internet for information. Websites and support groups are relatively easy to find and the individuals form partnerships with peers through online environments. These sites, however, offer varying levels of correct and appropriate information, posts often catastrophize the condition, question treatment options, and do not demonstrate that full recovery or remission is possible. Multidisciplinary health care teams offer much to the patient but occasionally the health practitioner does not understand the lived experience of the patient and does not partner with the patient on the health journey. As one participant said: '...the hardest thing is that my life is not my own. You make the decisions as to what my life is going to be and I’ve got to do whatever I can to convince you to help me because I’m stuffed without you.' Conclusion: Better CRPS treatment can result from better understanding the lived experience of patients. Offering valuable insight into the condition, patients can be a valuable member of the healthcare team treating this condition. Such a partnership may result in better health outcomes and improved quality of life through client empowerment.

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Item Type: Conference or Workshop Item (Commonwealth Reporting Category E) (Poster)
Refereed: No
Item Status: Live Archive
Faculty/School / Institute/Centre: No Faculty
Faculty/School / Institute/Centre: No Faculty
Date Deposited: 16 Mar 2022 02:06
Last Modified: 30 May 2022 00:28
Uncontrolled Keywords: Nursing; CRPS
Fields of Research (2008): 11 Medical and Health Sciences > 1110 Nursing > 111099 Nursing not elsewhere classified
Fields of Research (2020): 42 HEALTH SCIENCES > 4205 Nursing > 420599 Nursing not elsewhere classified

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