Exploring peoples’ lived experience of complex regional pain syndrome in Australia: a qualitative study

Abstract

Abstract Objectives Complex regional pain syndrome (CRPS) is a persistent pain condition which is often misunderstood and poorly managed. Qualitative studies are needed to explore the lived experience of the condition and to better understand patient perspectives on their management experiences and needs. The aim of this study was to explore the lived experience of CRPS in Australia, including exploration of their perceptions of care and advice received from healthcare professionals. Methods A qualitative study with individual in-depth semi-structured, face-to-face interviews was performed (n=15, 80% female, average time elapsed since diagnosis 3.8 years). Qualitative data were analysed using an inductive thematic analysis approach. Results Four main themes with associated subthemes were identified, representing the participants’ journey: (1) Life Changing Impact of CRPS (Subthemes: Impact on self, Impact on others); (2) Variable Experiences of Care (Subthemes: Helpful experiences of care, Unhelpful experiences of care); (3) Making Sense of CRPS (Subthemes: Knowledge and understanding, Dealing with unpredictability); and (4) Perceptions on Lessons Learned from Living with CRPS (Subthemes: Acceptance was an important part of the journey, Trial and error was necessary to find an individual way forward, Coping strategies). Conclusions The themes identified align to and expand on prior qualitative research findings in people with CRPS. It highlights the challenges people face related to their personal self, their close relationships and their social and work roles. It highlights the difficulties these people have in finding reliable, trust-worthy information. These findings suggest that healthcare professionals may benefit from education about how to better support people with CRPS, including helping people to navigate to the right care. Engaging people with CRPS in the development of educational resources should be a future research goal. It is recommended that patient perspectives are incorporated into the development of care pathways for CRPS.