Suppr
超能文献

帕金森病：患者在线讨论论坛的内容分析。使用网络民族志学的前瞻性观察研究。

Parkinson's disease: Content analysis of patient online discussion forums. A prospective observational study using Netnography.

机构信息

Department of General Practice, University of Lille, Lille, France; Department of Medical Pharmacology & Neurology, INSERM UMRS 1172, University of Lille, Lille, France.

Department of General Practice, University of Lille, Lille, France.

出版信息

Patient Educ Couns. 2021 Aug;104(8):2060-2066. doi: 10.1016/j.pec.2021.01.028. Epub 2021 Jan 28.

DOI:10.1016/j.pec.2021.01.028

PMID:33551207

Abstract

OBJECTIVES

To assess the users' characteristics, discussion contents, and the atmosphere of virtual peer communities.

METHODS

A qualitative, prospective study was conducted using the Netnography method. The most popular, publicly accessible French discussion forums were investigated. The web users' quotes were collected from May to October 2018. Data analysis triangulation was performed by two researchers using the NVivo 12® software.

RESULTS

The users discussed their experience with Parkinson's disease (PD) in a warm atmosphere. 23 discussion threads were analysed: 302 messages posted by 70 users (70% were females; the average illness duration was 6 years); 115 encoded nodes were created. Five user profiles appeared: leader, follower, expert, mixed, and undetermined. Common preoccupations were a lack of time and listening from the physicians' side. Three themes emerged: managing symptoms, living with PD, and sharing illness experiences. Users sought actively for a cure to limit or stop disease evolution, using alternative and complementary therapies to optimize their daily condition.

CONCLUSIONS

Online forums foster person's informal learnings about coping with PD. Healthcare professionals can use these learnings to optimize person-centred support.

PRACTICE IMPLICATIONS

During consultations, healthcare professionals should invite persons to discuss their online activity, informal learnings, beliefs and expectations towards therapeutic strategies.

摘要

目的

评估虚拟同行社区用户的特征、讨论内容和氛围。

方法

采用定性、前瞻性研究方法，运用网络民族志方法。研究人员调查了最受欢迎的、公开可访问的法国讨论论坛。2018 年 5 月至 10 月期间，收集网络用户的引述。两名研究人员使用 NVivo 12®软件对数据进行三角分析。

结果

用户在温暖的氛围中讨论他们的帕金森病（PD）经历。分析了 23 个讨论主题：70 名用户发布的 302 条消息（70%为女性；平均患病时间为 6 年）；创建了 115 个编码节点。出现了 5 种用户类型：领导者、追随者、专家、混合和未确定。常见的关注点是医生方面缺乏时间和倾听。出现了三个主题：症状管理、与 PD 共存和分享疾病经历。用户积极寻求治愈方法，以限制或阻止疾病的发展，使用替代和补充疗法来优化他们的日常状况。