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

Article


Johnston-Devin, Colleen, Oprescu, Florin, 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. https://doi.org/10.1016/j.jpain.2021.03.151
Article Title

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

ERA Journal ID16468
Article CategoryArticle
AuthorsJohnston-Devin, Colleen (Author), Oprescu, Florin (Author), Gray, Marion (Author) and Wallis, Marianne (Author)
Journal TitleJournal of Pain
Journal Citation22 (9), pp. 1111-1128
Number of Pages18
Year2021
Place of PublicationScotland
ISSN1526-5900
1528-8447
Digital Object Identifier (DOI)https://doi.org/10.1016/j.jpain.2021.03.151
Web Address (URL)https://www.sciencedirect.com/science/article/pii/S1526590021002029?via%3Dihub
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.

Keywordscomplex regional pain syndrome, CRPS, phenomenology, qualitative research, lived experience, chronic pain
ANZSRC Field of Research 2020420199. Allied health and rehabilitation science not elsewhere classified
Byline AffiliationsUniversity of the Sunshine Coast
School of Health and Wellbeing
Institution of OriginUniversity of Southern Queensland
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