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Neurooncol Pract. 2021 May 26;8(3):231-232. doi: 10.1093/nop/npab025. eCollection 2021 Jun.
3
Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.原发性脑癌成人患者及其照护者的在线自我管理资源质量:系统环境扫描。
BMC Palliat Care. 2021 Jan 23;20(1):22. doi: 10.1186/s12904-021-00715-4.
4
A Quantitative Analysis of Social Media to Determine Trends in Brain Tumor Care and Treatment.一项关于社交媒体的定量分析,以确定脑肿瘤护理与治疗的趋势。
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6
Patient-reported functional executive challenges and caregiver confirmation in adult brain tumor survivors.成年脑肿瘤幸存者的患者报告的功能执行挑战及照料者确认
J Cancer Surviv. 2021 Oct;15(5):696-705. doi: 10.1007/s11764-020-00961-0. Epub 2020 Oct 26.
7
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10
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对Reddit上应对脑癌的患者和护理人员的调查:脑肿瘤子版块的内容分析

An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit.

作者信息

Tripathi Sanidhya D, Parker Pearman D, Prabhu Arpan V, Thomas Kevin, Rodriguez Analiz

机构信息

Department of Biomedical Engineering, University of Arkansas, Fayetteville, AR, United States.

College of Nursing, University of Arkansas for Medical Sciences, Little Rock, AR, United States.

出版信息

JMIR Cancer. 2022 Jun 22;8(2):e35324. doi: 10.2196/35324.

DOI:10.2196/35324
PMID:35731559
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9260533/
Abstract

BACKGROUND

Occurring in up to 40% of all patients with cancer, the incidence of brain tumors has caused limited survival, a high psychosocial burden, and an increase in the loss of decision-making capability for the unique population. Although specific symptoms depend on the type of brain tumor, a clinical team of physicians, nurses, and other individuals commonly assist patients and their caregivers with how to tackle the upcoming challenges of their diagnosis. Despite the support from clinical team members, many patients and caregivers may still seek outside support through social media to process their emotions and seek comfort outside of the clinical setting. Specifically, online resources such as Reddit are used where users are provided with the anonymity they need to show their true behavior without fear of judgment. In this study, we aimed to examine trends from Reddit discussion threads on brain tumors to identify areas of need in patient care.

OBJECTIVE

Our primary aims were to determine the type of Reddit user posting, classify the specific brain tumors that were the subject of the posts, and examine the content of the original posts.

METHODS

We used a qualitative descriptive design to understand patients' and caregivers' unmet and met needs. We selected posts from the top-rated 100 posts from the r/braincancer subreddit from February 2017 to June 2020 to identify common themes using content analysis.

RESULTS

The qualitative content analysis revealed how Reddit users primarily used the forum as a method to understand and process the emotions surrounding a brain tumor diagnosis. Three major topic areas from content analysis emerged as prominent themes, including (1) harnessing hope, (2) moving through the grief process, and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (32/88, 36%) who used Reddit as a reflective journaling tool to process the associated emotions of a challenging diagnosis.

CONCLUSIONS

This study shows the potential of Reddit to serve as a unique group therapy platform for patients affected by brain tumors. Our results highlight the support provided by the Reddit community members as a unique mechanism to assist cancer survivors and caregivers with the emotional processing of living with brain tumors. Additionally, the results highlight the importance of recommending Reddit as a therapeutic virtual community and the need for implementing online resources as a part of a health care professional's repertoire to understand the level of support they can give their patients.

摘要

背景

脑肿瘤的发病率在所有癌症患者中高达40%,其导致患者生存期有限、心理社会负担沉重,且这一特殊人群的决策能力丧失情况增多。尽管具体症状取决于脑肿瘤的类型,但由医生、护士和其他人员组成的临床团队通常会协助患者及其护理人员应对即将到来的诊断挑战。尽管有临床团队成员的支持,许多患者和护理人员仍可能通过社交媒体寻求外部支持,以处理他们的情绪并在临床环境之外寻求安慰。具体而言,像Reddit这样的在线资源被人们使用,在那里用户能够获得所需的匿名性,从而展现真实行为而无需担心被评判。在本研究中,我们旨在研究Reddit上关于脑肿瘤的讨论线程的趋势,以确定患者护理方面的需求领域。

目的

我们的主要目的是确定在Reddit上发帖的用户类型,对帖子所涉及的特定脑肿瘤进行分类,并检查原始帖子的内容。

方法

我们采用定性描述性设计来了解患者和护理人员未满足和已满足的需求。我们从2017年2月至2020年6月r/脑癌子版块评分最高的100篇帖子中选取帖子,通过内容分析来确定共同主题。

结果

定性内容分析揭示了Reddit用户主要如何将该论坛用作理解和处理围绕脑肿瘤诊断的情绪的一种方式。内容分析中出现的三个主要主题领域成为突出主题,包括(1)怀揣希望,(2)度过悲伤过程,以及(3)向其他Reddit用户表达感激之情。大多数帖子的作者是脑肿瘤患者(32/88,36%),他们将Reddit用作反思性日志工具,以处理具有挑战性诊断带来的相关情绪。

结论

本研究表明Reddit有潜力成为受脑肿瘤影响患者的独特群体治疗平台。我们的结果突出了Reddit社区成员提供的支持,这是一种独特机制,可协助癌症幸存者和护理人员对脑肿瘤患者的生活进行情绪处理。此外,结果强调了推荐Reddit作为治疗性虚拟社区的重要性,以及将在线资源作为医疗保健专业人员全部技能的一部分加以实施的必要性,以便了解他们能够给予患者的支持程度。