School of Physiotherapy and Exercise Science, Curtin University, GPO Box U1987, 6845Perth, Western Australia, Australia.
Claremont Pain Clinic, 12/237 Stirling Highway, 6010Claremont, Western Australia, Australia.
Scand J Pain. 2021 Jan 6;21(2):393-405. doi: 10.1515/sjpain-2020-0142. Print 2021 Apr 27.
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.
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.
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).
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.
复杂性区域疼痛综合征（CRPS）是一种持续的疼痛状况，常被误解且管理不善。需要进行定性研究来探索该疾病的实际体验，并更好地了解患者对其管理体验和需求的看法。本研究旨在探讨澳大利亚 CRPS 的实际体验，包括探索患者对护理的看法以及从医疗保健专业人员那里获得的建议。
采用个体深入半结构化、面对面访谈的定性研究（n=15，80%为女性，平均诊断后时间 3.8 年）。使用归纳主题分析方法对定性数据进行分析。
确定了四个主要主题及相关的子主题，代表了参与者的经历：（1）CRPS 对生活的改变（子主题：对自己的影响，对他人的影响）；（2）护理体验的变化（子主题：护理的有益体验，护理的无益体验）；（3）对 CRPS 的理解（子主题：知识和理解，应对不可预测性）；（4）从与 CRPS 共存中吸取的经验教训的看法（子主题：接受是旅程的重要组成部分，尝试和错误是找到个人前进道路的必要条件，应对策略）。
确定的主题与 CRPS 患者的先前定性研究结果一致，并进行了扩展。它突出了人们在个人自我、亲密关系以及社会和工作角色方面面临的挑战。它强调了这些人在寻找可靠、值得信赖的信息方面所面临的困难。这些发现表明，医疗保健专业人员可能受益于有关如何更好地支持 CRPS 患者的教育，包括帮助人们找到正确的护理。让 CRPS 患者参与教育资源的开发应成为未来的研究目标。建议将患者观点纳入 CRPS 护理途径的制定中。
