{"title":"“我的纤维家族!”facebook纤维肌痛支持小组讨论内容的定性分析。","authors":"Lyndsay Crump, Diane LaChapelle","doi":"10.1080/24740527.2022.2078183","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and information, there are concerns that such groups can be harmful.</p><p><strong>Aims and methods: </strong>Using a nonparticipatory observational stance, the authors analyzed discussions in three Facebook FM OPSGs (approximately 15,000 members, mostly women) to determine what themes best characterize their discussion content and whether being in a particular group was related to the type of thematic content to which they were exposed.</p><p><strong>Results: </strong>Two themes were identified that represented explicit reasons group members participated in the OPSG (trying to understand FM and seeking/offering emotional support). Six themes represented underlying reasons members sought informational and emotional support in FM OPSGs (fighting FM, learning to live with FM, struggling with identity, distressing thoughts and feelings, judgment, empowerment-seeking). No salient differences were identified between the thematic content of each group.</p><p><strong>Conclusions: </strong>The findings suggest that FM OPSGs may provide much needed psychosocial and emotional support regarding important aspects of psychological adjustment to living with FM while also inadvertently encouraging approaches to living with FM that do not align with evidence-based FM management recommendations (e.g., investment in fighting rather than accepting FM). These findings may be useful to patients considering joining an FM OPSG and to health providers helping patients navigate to resources that can address their emotional or psychological support needs.</p>","PeriodicalId":53214,"journal":{"name":"Canadian Journal of Pain-Revue Canadienne de la Douleur","volume":"6 1","pages":"95-111"},"PeriodicalIF":2.0000,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9733682/pdf/","citationCount":"1","resultStr":"{\"title\":\"\\\"My Fibro Family!\\\" A qualitative analysis of facebook fibromyalgia support groups' discussion content.\",\"authors\":\"Lyndsay Crump, Diane LaChapelle\",\"doi\":\"10.1080/24740527.2022.2078183\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and information, there are concerns that such groups can be harmful.</p><p><strong>Aims and methods: </strong>Using a nonparticipatory observational stance, the authors analyzed discussions in three Facebook FM OPSGs (approximately 15,000 members, mostly women) to determine what themes best characterize their discussion content and whether being in a particular group was related to the type of thematic content to which they were exposed.</p><p><strong>Results: </strong>Two themes were identified that represented explicit reasons group members participated in the OPSG (trying to understand FM and seeking/offering emotional support). Six themes represented underlying reasons members sought informational and emotional support in FM OPSGs (fighting FM, learning to live with FM, struggling with identity, distressing thoughts and feelings, judgment, empowerment-seeking). No salient differences were identified between the thematic content of each group.</p><p><strong>Conclusions: </strong>The findings suggest that FM OPSGs may provide much needed psychosocial and emotional support regarding important aspects of psychological adjustment to living with FM while also inadvertently encouraging approaches to living with FM that do not align with evidence-based FM management recommendations (e.g., investment in fighting rather than accepting FM). These findings may be useful to patients considering joining an FM OPSG and to health providers helping patients navigate to resources that can address their emotional or psychological support needs.</p>\",\"PeriodicalId\":53214,\"journal\":{\"name\":\"Canadian Journal of Pain-Revue Canadienne de la Douleur\",\"volume\":\"6 1\",\"pages\":\"95-111\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2022-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9733682/pdf/\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Canadian Journal of Pain-Revue Canadienne de la Douleur\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1080/24740527.2022.2078183\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Canadian Journal of Pain-Revue Canadienne de la Douleur","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/24740527.2022.2078183","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 1
摘要
背景:纤维肌痛(FM)是一种诊断上有争议的综合征,其特征是慢性广泛疼痛、疲劳、睡眠困难、认知功能障碍和精神健康症状。尽管在线同伴支持小组(OPSGs)可以帮助FM患者获得支持和信息,但人们担心这样的小组可能有害。目的和方法:采用非参与性观察的立场,作者分析了三个Facebook FM opsg(大约15,000名成员,大多数是女性)的讨论,以确定哪些主题最能描述他们的讨论内容,以及他们所接触的主题内容类型是否与特定群体有关。结果:确定了两个主题,代表了小组成员参与OPSG的明确原因(试图理解FM和寻求/提供情感支持)。六个主题代表了成员在FM opsg中寻求信息和情感支持的潜在原因(对抗FM、学会与FM一起生活、与身份作斗争、痛苦的想法和感受、判断、寻求赋权)。各组主题内容之间没有明显差异。结论:研究结果表明,FM OPSGs可能在FM患者生活心理调整的重要方面提供急需的社会心理和情感支持,同时也无意中鼓励了与基于证据的FM管理建议不一致的FM患者生活方式(例如,投资于对抗而不是接受FM)。这些发现可能对考虑加入FM OPSG的患者和帮助患者找到能够解决其情感或心理支持需求的资源的健康提供者有用。
"My Fibro Family!" A qualitative analysis of facebook fibromyalgia support groups' discussion content.
Background: Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and information, there are concerns that such groups can be harmful.
Aims and methods: Using a nonparticipatory observational stance, the authors analyzed discussions in three Facebook FM OPSGs (approximately 15,000 members, mostly women) to determine what themes best characterize their discussion content and whether being in a particular group was related to the type of thematic content to which they were exposed.
Results: Two themes were identified that represented explicit reasons group members participated in the OPSG (trying to understand FM and seeking/offering emotional support). Six themes represented underlying reasons members sought informational and emotional support in FM OPSGs (fighting FM, learning to live with FM, struggling with identity, distressing thoughts and feelings, judgment, empowerment-seeking). No salient differences were identified between the thematic content of each group.
Conclusions: The findings suggest that FM OPSGs may provide much needed psychosocial and emotional support regarding important aspects of psychological adjustment to living with FM while also inadvertently encouraging approaches to living with FM that do not align with evidence-based FM management recommendations (e.g., investment in fighting rather than accepting FM). These findings may be useful to patients considering joining an FM OPSG and to health providers helping patients navigate to resources that can address their emotional or psychological support needs.