{"title":"通过文字叙述了解纤维肌痛患者的生活经历。","authors":"Mayte Serrat, Beatriz Sora, Patricia Ureña, Helena Vall-Roqué, Montserrat Edo-Gual, Rubén Nieto","doi":"10.1002/msc.1905","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM.</p><p><strong>Materials and methods: </strong>This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia.</p><p><strong>Results and conclusions: </strong>Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.</p>","PeriodicalId":46945,"journal":{"name":"Musculoskeletal Care","volume":"22 2","pages":"e1905"},"PeriodicalIF":1.5000,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Written narratives to understand the experience of individuals living with fibromyalgia.\",\"authors\":\"Mayte Serrat, Beatriz Sora, Patricia Ureña, Helena Vall-Roqué, Montserrat Edo-Gual, Rubén Nieto\",\"doi\":\"10.1002/msc.1905\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM.</p><p><strong>Materials and methods: </strong>This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia.</p><p><strong>Results and conclusions: </strong>Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.</p>\",\"PeriodicalId\":46945,\"journal\":{\"name\":\"Musculoskeletal Care\",\"volume\":\"22 2\",\"pages\":\"e1905\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2024-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Musculoskeletal Care\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1002/msc.1905\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"RHEUMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Musculoskeletal Care","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1002/msc.1905","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"RHEUMATOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
目的:通过书面叙述(WN)探讨纤维肌痛(FM)患者的经历,并初步研究这些叙述对于医护人员评估纤维肌痛患者的整体感知严重程度和残疾情况的潜在价值:这项横断面研究对 46 名确诊为 FM 患者进行了调查。他们被要求完成一项旨在记录个人经历的 WN 任务。研究人员评估了他们在文本中表达的严重程度和残疾情况,还要求参与者完成修订版纤维肌痛影响问卷(FIQR)、医院焦虑抑郁量表(HAD)和坦帕运动恐惧症量表:在对参与者提供的叙述进行定性分析后,确定了八大主题:疾病故事、纤维肌痛特征、其他疾病、影响、应对策略、社会支持、疼痛诱因和治疗方法。疼痛是一种影响心理、生理和社会福祉的严重症状,其诱因和应对机制多种多样。参与者强调了诊断过程中的困难,使用了多种治疗策略,并表示缺乏来自医护人员和社会的理解。研究人员对写作严重性和残疾程度的评估与 FIQR 和 HAD 评分之间存在明显的相关性。这项研究强调了叙事在捕捉 FM 体验的多面性方面的价值,并暗示了叙事在临床理解和管理方面的潜力。
Written narratives to understand the experience of individuals living with fibromyalgia.
Purpose: To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM.
Materials and methods: This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia.
Results and conclusions: Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.
期刊介绍:
Musculoskeletal Care is a peer-reviewed journal for all health professionals committed to the clinical delivery of high quality care for people with musculoskeletal conditions and providing knowledge to support decision making by professionals, patients and policy makers. This journal publishes papers on original research, applied research, review articles and clinical guidelines. Regular topics include patient education, psychological and social impact, patient experiences of health care, clinical up dates and the effectiveness of therapy.