Nishikawara Ria K, Schultz Izabela Z, Butterfield Lee D, Murray John W
Educational and Counselling Psychology, and Special Education, The University of British Columbia, Vancouver, British Columbia, Canada.
Vancouver, British Columbia, Canada.
Can J Pain. 2023 Mar 30;7(2):2176745. doi: 10.1080/24740527.2023.2176745. eCollection 2023.
Fibromyalgia (FM) is a complex, still poorly understood, and difficult-to-treat chronic pain condition for which many people struggle to find adequate care.
This study investigated the research question, "What do people accessing health care services for fibromyalgia perceive as helpful, hindering, and absent but desired?" with the aim of identifying clear, implementable changes for clinical practice.
This study used the enhanced critical incident technique (ECIT), a qualitative research method that focuses on helping, hindering, and desired factors, to explore the health care experiences of 14 individuals (12 women and 2 men) diagnosed with FM.
Using qualitative data analysis, results identified three categories of health care experiences: (1) systemic navigation, including financial and economic security; accessibility, flexibility, and continuity of care; and diversity of treatment options; (2) clinician-patient alliance, including invalidation and prejudice; therapeutic bond; and clinician-patient alignment on treatment plan; and (3) patient self-management strategies, including information-seeking and education, self-advocacy, social supports, symptom management strategies, and other coping strategies. Participants tended to conceptualize their health care concerns as a multilayered systemic problem.
Participants described a medical system they perceived as poorly equipped to support their needs and tended to invalidate their health concerns. Helping experiences tended to be the result of unique efforts on the part of individual clinicians. Findings emphasize the importance of recognizing the complexities and psychological impact of pain, trusting clinician-patient relationships, multidisciplinary/interdisciplinary care within a biopsychosocial framework, and improved education and awareness around psychosocial aspects of FM and effective management of chronic pain.
纤维肌痛（FM）是一种复杂、仍未被充分理解且难以治疗的慢性疼痛病症，许多患者难以获得足够的治疗。
本研究探讨了“寻求纤维肌痛医疗服务的患者认为哪些因素有帮助、有阻碍以及虽不存在但期望存在？”这一研究问题，旨在确定临床实践中明确且可实施的改进措施。
本研究采用增强关键事件技术（ECIT），这是一种定性研究方法，聚焦于帮助因素、阻碍因素和期望因素，以探究14名被诊断为纤维肌痛的患者（12名女性和2名男性）的医疗体验。
通过定性数据分析，结果确定了三类医疗体验：（1）系统导航，包括财务和经济保障；医疗服务的可及性、灵活性和连续性；以及治疗选择的多样性；（2）医患联盟，包括无效化和偏见；治疗关系；以及医患在治疗计划上的一致性；（3）患者自我管理策略，包括信息寻求与教育、自我维权、社会支持、症状管理策略以及其他应对策略。参与者倾向于将他们的医疗问题概念化为一个多层次的系统问题。
参与者描述了一个他们认为无法充分满足其需求且往往忽视其健康问题的医疗系统。有帮助的体验往往是个别临床医生独特努力的结果。研究结果强调了认识疼痛的复杂性和心理影响、信任医患关系、在生物心理社会框架内进行多学科/跨学科护理以及提高对纤维肌痛心理社会方面和慢性疼痛有效管理的教育与认识的重要性。
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