Patients describe their lived experiences of battling to live with complex regional pain syndrome

Johnston-Devin, Colleen and Oprescu, Florin and Gray, Marion and Wallis, Marianne (2021) Patients describe their lived experiences of battling to live with complex regional pain syndrome. Journal of Pain, 22 (9). pp. 1111-1128. ISSN 1526-5900

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Abstract

Complex regional pain syndrome (CRPS) has never comprehensively been examined from a lived experience perspective. Patients generally have a poorer quality of life than people with other chronic pain conditions. This study aimed to understand the essence of living with CRPS. Data were collected from 17 patients via in-depth interviews. Hermeneutic discussions with four health professionals generated deeper insights. Internet blogs and a book containing patient stories were included for theme verification and triangulation. CRPS is seen as a war-like experience and five themes were identified within the battle: 'dealing with the unknown enemy', 'building an armoury against amoving target', 'battles within the war', 'developing battle plans with allies' and 'warrior or prisoner of war'. Patients live with a chronic pain condition and experience problems unique to CRPS such as fear of pain extending to other parts of their body. Use of the model generated by this research may assist patient/clinician interactions and guide therapeutic discussions. Support for people living with CRPS does not always exist, and some healthcare professionals require additional education about the condition. Better health outcomes are experienced by patients when their personal situation and experiences are heard and understood by health care professionals.

Perspective: This article presents the lived experience of CRPS. This information and the model generated can help clinicians to better understand their patients and deliver appropriate patient-centered care.


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Item Type: Article (Commonwealth Reporting Category C)
Refereed: Yes
Item Status: Live Archive
Additional Information: This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/)
Faculty/School / Institute/Centre: Current - Faculty of Health, Engineering and Sciences - School of Health and Wellbeing (1 Jan 2015 -)
Faculty/School / Institute/Centre: Current - Faculty of Health, Engineering and Sciences - School of Health and Wellbeing (1 Jan 2015 -)
Date Deposited: 12 Oct 2021 05:48
Last Modified: 09 Nov 2021 00:17
Uncontrolled Keywords: complex regional pain syndrome, CRPS, phenomenology, qualitative research, lived experience, chronic pain
Fields of Research (2008): 11 Medical and Health Sciences > 1117 Public Health and Health Services > 111799 Public Health and Health Services not elsewhere classified
11 Medical and Health Sciences > 1110 Nursing > 111099 Nursing not elsewhere classified
Fields of Research (2020): 42 HEALTH SCIENCES > 4201 Allied health and rehabilitation science > 420199 Allied health and rehabilitation science not elsewhere classified
Socio-Economic Objectives (2008): E Expanding Knowledge > 97 Expanding Knowledge > 970111 Expanding Knowledge in the Medical and Health Sciences
Identification Number or DOI: https://doi.org/10.1016/j.jpain.2021.03.151
URI: http://eprints.usq.edu.au/id/eprint/43853

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