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一项针对干燥综合征患者女性性功能的互联网论坛讨论的定性探索。

A qualitative exploration of internet forum discussions surrounding female sexual function for individuals with Sjögren's syndrome.

机构信息

Department of Social Work, Education and Community Wellbeing, Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne, United Kingdom.

Department of Psychology, Faculty of Health & Life Sciences, Northumbria University, Newcastle upon Tyne, United Kingdom.

出版信息

PLoS One. 2023 Sep 8;18(9):e0291422. doi: 10.1371/journal.pone.0291422. eCollection 2023.

Abstract

Sexual dysfunction is a common experience for women with the autoimmune rheumatic disease, Sjögren's syndrome (SS); however, the lived experience of how the disease affects sexual functioning and the sexual environment remains unexplored. This qualitative study explores the conversations pertaining to female sexual function and the sexual environment that individuals with SS have on an internet forum. Qualitative data posted on one publicly accessible, worldwide, internet forum was extracted using an automated web scraping tool. A total of 247,694 posts across 23,382 threads were scraped from the forum in July 2019 and June 2022 (from the United Kingdom). A predetermined and theoretically informed keyword search strategy was used to screen the captured data for content relevant to the study aim. The dataset was cleaned to remove duplication and identifying information and screened for topic relevance. The Computer-Assisted Qualitative Data Analysis software tool, ATLAS.ti, was used to facilitate the data analysis process. Thematic analysis was conducted on 1443 female-oriented posts, and four key themes were identified: the symptoms of SS and their impact on the sexual environment; the emotional responses that are commonly evoked in response to sexual difficulties; the strategies that users have implemented to manage sexual problems; and the impact that a partner's behavior may have on the sexual environment. Together these themes provide an insight into the nature of sexual difficulties for females with SS. Our findings provide novel insights to inform clinical discussions between practitioners and patients whilst further outlining the importance of undertaking qualitative research with this population.

摘要

性功能障碍是患有自身免疫性风湿病——干燥综合征(Sjögren's syndrome,SS)的女性常见的经历;然而,疾病如何影响性功能和性环境的真实体验仍未得到探索。本定性研究探讨了 SS 患者在互联网论坛上关于女性性功能和性环境的对话。使用自动网络爬虫工具从 2019 年 7 月至 2022 年 6 月(来自英国)的一个公开可访问的全球互联网论坛上提取了定性数据。使用预定的和基于理论的关键字搜索策略筛选捕获的数据,以筛选与研究目的相关的内容。数据集经过清理以去除重复项和识别信息,并筛选主题相关性。使用计算机辅助定性数据分析软件工具 ATLAS.ti 来促进数据分析过程。对 1443 篇面向女性的帖子进行了主题分析,确定了四个关键主题:SS 的症状及其对性环境的影响;对性困难通常产生的情绪反应;用户为管理性问题而实施的策略;以及伴侣行为可能对性环境产生的影响。这些主题共同深入了解了 SS 女性的性功能障碍的性质。我们的研究结果为从业者与患者之间的临床讨论提供了新的见解,同时进一步强调了对该人群进行定性研究的重要性。

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The lived experience of Sjögren's Syndrome.干燥综合征的生活体验。
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Are the women with Sjögren's Syndrome satisfied with their sexual activity?干燥综合征女性对其性活动满意吗?
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