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在线健康社区中患癌症的性少数女性的体验。

Online health community experiences of sexual minority women with cancer.

机构信息

Department of Health and Community Systems, School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.

Department of Biomedical Informatics, School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.

出版信息

J Am Med Inform Assoc. 2019 Aug 1;26(8-9):759-766. doi: 10.1093/jamia/ocz103.

Abstract

OBJECTIVE

The study sought to explore online health communities (OHCs) for sexual minority women (SMW) with cancer by conducting computational text analysis on posts.

MATERIALS AND METHODS

Eight moderated OHCs were hosted by the National LGBT Cancer Network from 2013 to 2015. Forty-six SMW wrote a total of 885 posts across the OHCs, which were analyzed using Linguistic Inquiry and Word Count and latent Dirichlet allocation. Pearson correlation was calculated between Linguistic Inquiry and Word Count word categories and participant engagement in the OHCs. Latent Dirichlet allocation was used to derive main topics.

RESULTS

Participants (average age 46 years; 89% white/non-Hispanic) who used more sadness, female-reference, drives, and religion-related words were more likely to post in the OHCs. Ten topics emerged: coping, holidays and vacation, cancer diagnosis and treatment, structure of day-to-day life, self-care, loved ones, physical recovery, support systems, body image, and symptom management. Coping was the most common topic; symptom management was the least common topic.

DISCUSSION

Highly engaged SMW in the OHCs connected to others via their shared female gender identity. Topics discussed in these OHCs were similar to OHCs for heterosexual women, and sexual identity was not a dominant topic. The presence of OHC moderators may have driven participation. Formal comparison between sexual minority and heterosexual women's OHCs are needed.

CONCLUSIONS

Our findings contribute to a better understanding of the experiences of SMW cancer survivors and can inform the development of tailored OHC-based interventions for SMW who are survivors of cancer.

摘要

目的

本研究旨在通过对帖子进行计算文本分析,探索性少数群体女性(SMW)癌症患者的在线健康社区(OHC)。

材料与方法

2013 年至 2015 年,国家 LGBT 癌症网络主办了 8 个经 moderated 的 OHC。46 名 SMW 在 OHC 上共发表了 885 篇帖子,使用语言查询和词汇计数以及潜在狄利克雷分配进行分析。计算语言查询和词汇计数词汇类别与参与者参与 OHC 之间的 Pearson 相关性。使用潜在狄利克雷分配得出主要主题。

结果

参与者(平均年龄 46 岁;89%为白人/非西班牙裔)使用更多悲伤、女性参考、驱动力和宗教相关词汇的人更有可能在 OHC 上发布内容。出现了 10 个主题:应对、假期和休假、癌症诊断和治疗、日常生活结构、自我护理、亲人、身体康复、支持系统、身体形象和症状管理。应对是最常见的主题;症状管理是最不常见的主题。

讨论

高度参与 OHC 的 SMW 通过共同的女性性别认同与他人联系。这些 OHC 中讨论的主题与异性恋女性的 OHC 相似,性身份不是主要话题。OHC 主持人的存在可能推动了参与。需要对性少数群体和异性恋女性的 OHC 进行正式比较。

结论

我们的研究结果有助于更好地了解 SMW 癌症幸存者的经历,并为基于 OHC 的针对 SMW 癌症幸存者的量身定制的干预措施的开发提供信息。

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