PDF(Pubmed)
Abstract：
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.
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.
摘要：
背景：在美国，阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)患者的护理人员每年提供超过160亿小时的无偿护理.这些护理人员经历与提供护理相关的挑战相关的高水平的压力和负担。社交媒体是个人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主题，专门检查用户讨论的社会支持和行为症状学元素。
方法：我们首先从2个痴呆症特定的subreddit论坛（r/Alzheimers和r/destime）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显著主题.
结果：总体一致性得分最高（0.38）的主题模型包括10个主题，包括照顾者的负担，焦虑,寻求支持,和AD/ADRD行为症状学。定性分析提供了额外的上下文，其中用户为护理体验的许多方面寻求情感和信息支持，包括协助做出关键的护理相关决策。用户在Reddit上表达了具有挑战性和复杂的情绪，这可能是当面表达的禁忌。
结论：Reddit用户寻求许多不同形式的支持，包括情感和特定的信息支持，从其他人在互联网上。用户表达了各种各样的担忧，挑战,和行为症状作为护理体验的一部分进行管理。独特的(即，匿名和温和）论坛的性质允许一个安全的空间来表达情绪，而没有记录在案的看护者的耻辱。需要额外的支持结构来帮助AD/ADRD患者的护理人员。
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主题，专门检查用户讨论的社会支持和行为症状学元素。
方法：我们首先从2个痴呆症特定的subreddit论坛（r/Alzheimers和r/destime）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显著主题.
结果：总体一致性得分最高（0.38）的主题模型包括10个主题，包括照顾者的负担，焦虑,寻求支持,和AD/ADRD行为症状学。定性分析提供了额外的上下文，其中用户为护理体验的许多方面寻求情感和信息支持，包括协助做出关键的护理相关决策。用户在Reddit上表达了具有挑战性和复杂的情绪，这可能是当面表达的禁忌。
结论：Reddit用户寻求许多不同形式的支持，包括情感和特定的信息支持，从其他人在互联网上。用户表达了各种各样的担忧，挑战,和行为症状作为护理体验的一部分进行管理。独特的(即，匿名和温和）论坛的性质允许一个安全的空间来表达情绪，而没有记录在案的看护者的耻辱。需要额外的支持结构来帮助AD/ADRD患者的护理人员。
