Department of Health & Wellness Design, School of Public Health, Indiana University, Bloomington, IN, United States.
Department of Applied Health Science, School of Public Health, Indiana University, Bloomington, IN, United States.
JMIR Aging. 2024 Jun 19;7:e59294. doi: 10.2196/59294.
BACKGROUND: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. OBJECTIVE: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. METHODS: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. RESULTS: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. CONCLUSIONS: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.
背景: 在美国,阿尔茨海默病和阿尔茨海默病相关痴呆症(AD/ADRD)患者的护理人员每年提供超过 160 亿小时的无偿护理。这些护理人员因提供护理所带来的挑战而承受着较高水平的压力和负担。社交媒体是人们寻求各种形式支持的新兴空间。 目的: 我们旨在探索社交媒体网站 Reddit 上与 AD/ADRD 相关的主要话题。然后,我们旨在深入探讨这些话题,具体研究用户讨论的社会支持和行为症状学的各个方面。 方法: 我们首先从发布在 2 个专门针对痴呆症的子论坛(r/Alzheimers 和 r/dementia)的 6563 个帖子中生成了一个无监督主题模型。然后,我们对这些数据的一个随机子集进行了手动定性内容分析,以进一步探索语料库中的突出主题。 结果: 总体连贯性得分最高(0.38)的主题模型包括 10 个主题,包括护理人员负担、焦虑、寻求支持和 AD/ADRD 行为症状学。定性分析提供了更多的背景信息,用户在许多方面的护理体验中寻求情感和信息支持,包括在做出关键护理相关决策时获得帮助。用户在 Reddit 上表达了复杂的情感,这些情感在现实生活中可能是禁忌的。 结论: Reddit 用户从互联网上的其他人那里寻求许多不同形式的支持,包括情感支持和特定信息支持。用户表达了在护理体验中管理各种担忧、挑战和行为症状的需要。论坛独特的(即匿名和受监管)性质允许他们在没有护理人员耻辱感的情况下安全地表达情感。需要更多的支持结构来帮助 AD/ADRD 患者的护理人员。
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