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.
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。