Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns

BackgroundAlzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as v...

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Main Authors: Congning Ni, Qingyuan Song, Qingxia Chen, Lijun Song, Patricia Commiskey, Lauren Stratton, Bradley Malin, Zhijun Yin
Format: Article
Language:English
Published: JMIR Publications 2024-12-01
Series:JMIR Aging
Online Access:https://aging.jmir.org/2024/1/e60050
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author Congning Ni
Qingyuan Song
Qingxia Chen
Lijun Song
Patricia Commiskey
Lauren Stratton
Bradley Malin
Zhijun Yin
author_facet Congning Ni
Qingyuan Song
Qingxia Chen
Lijun Song
Patricia Commiskey
Lauren Stratton
Bradley Malin
Zhijun Yin
author_sort Congning Ni
collection DOAJ
description BackgroundAlzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based peer support might influence their mental well-being. ObjectiveThis study aims to examine the dynamics of sentiment scores, a major indicator of mental well-being, among informal ADRD caregivers, specifically how their sentiment changes as they participate in caregiving experience discussions within 2 ADRD web-based communities. MethodsWe collected data from 2 large web-based ADRD caregiving communities, ALZConnected (from November 2011 to August 2022) and TalkingPoint (from March 2003 to November 2022). Using the Valence Aware Dictionary for Sentiment Reasoning and Linguistic Inquiry and Word Count, we calculated sentiment scores for each post and evaluated how the initial sentiment score of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics consistently associated with sentiment changes within these threads. We investigated longitudinal sentiment trends to identify patterns of sentimental stability or enhancement due to prolonged engagement in web-based communities by plotting linear interpolation lines of the sentiment values of each individual user. ResultsThe ALZConnected dataset comprised 532,992 posts, consisting of 57,641 topic threads and 475,351 comments. The TalkingPoint dataset was composed of 846,344 posts, consisting of 81,068 topic threads and 765,276 comments. Our research revealed that topic initiators experienced a notable increase in sentiment as they engaged in subsequent discussions within their threads, with a significant uptick in positivity in the short term. This phenomenon is part of a broader trend of steadily rising positive sentiment among ADRD caregivers. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions, and practical concerns, such as diagnosis and treatment and everyday care practices. We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient=3.53; P<.001), while topics related to illness (coefficient=–1.37; P<.001) and caregiving facilities (coefficient=–1.98; P<.001) tended to correlate with lower sentiment scores. This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers. ConclusionsThis study identifies sentiment changes among informal ADRD caregivers through their interactions in 2 extensive web-based communities. These findings emphasize the importance of early emotional support within a topic thread and demonstrate a predominantly positive sentiment in these communities over time. These further highlight the value of web-based peer support and its potential to enhance the emotional well-being of informal ADRD caregivers.
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spelling doaj-art-38c3bf28b2404d0bb4ac0f1db4f6a24f2024-12-04T16:00:33ZengJMIR PublicationsJMIR Aging2561-76052024-12-017e6005010.2196/60050Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction PatternsCongning Nihttps://orcid.org/0000-0001-6950-6948Qingyuan Songhttps://orcid.org/0000-0002-2999-8690Qingxia Chenhttps://orcid.org/0000-0003-0507-1847Lijun Songhttps://orcid.org/0000-0003-3162-2649Patricia Commiskeyhttps://orcid.org/0000-0001-6376-4698Lauren Strattonhttps://orcid.org/0000-0002-4615-8749Bradley Malinhttps://orcid.org/0000-0003-3040-5175Zhijun Yinhttps://orcid.org/0000-0002-3075-1337 BackgroundAlzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based peer support might influence their mental well-being. ObjectiveThis study aims to examine the dynamics of sentiment scores, a major indicator of mental well-being, among informal ADRD caregivers, specifically how their sentiment changes as they participate in caregiving experience discussions within 2 ADRD web-based communities. MethodsWe collected data from 2 large web-based ADRD caregiving communities, ALZConnected (from November 2011 to August 2022) and TalkingPoint (from March 2003 to November 2022). Using the Valence Aware Dictionary for Sentiment Reasoning and Linguistic Inquiry and Word Count, we calculated sentiment scores for each post and evaluated how the initial sentiment score of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics consistently associated with sentiment changes within these threads. We investigated longitudinal sentiment trends to identify patterns of sentimental stability or enhancement due to prolonged engagement in web-based communities by plotting linear interpolation lines of the sentiment values of each individual user. ResultsThe ALZConnected dataset comprised 532,992 posts, consisting of 57,641 topic threads and 475,351 comments. The TalkingPoint dataset was composed of 846,344 posts, consisting of 81,068 topic threads and 765,276 comments. Our research revealed that topic initiators experienced a notable increase in sentiment as they engaged in subsequent discussions within their threads, with a significant uptick in positivity in the short term. This phenomenon is part of a broader trend of steadily rising positive sentiment among ADRD caregivers. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions, and practical concerns, such as diagnosis and treatment and everyday care practices. We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient=3.53; P<.001), while topics related to illness (coefficient=–1.37; P<.001) and caregiving facilities (coefficient=–1.98; P<.001) tended to correlate with lower sentiment scores. This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers. ConclusionsThis study identifies sentiment changes among informal ADRD caregivers through their interactions in 2 extensive web-based communities. These findings emphasize the importance of early emotional support within a topic thread and demonstrate a predominantly positive sentiment in these communities over time. These further highlight the value of web-based peer support and its potential to enhance the emotional well-being of informal ADRD caregivers.https://aging.jmir.org/2024/1/e60050
spellingShingle Congning Ni
Qingyuan Song
Qingxia Chen
Lijun Song
Patricia Commiskey
Lauren Stratton
Bradley Malin
Zhijun Yin
Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
JMIR Aging
title Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
title_full Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
title_fullStr Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
title_full_unstemmed Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
title_short Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns
title_sort sentiment dynamics among informal caregivers in web based alzheimer communities systematic analysis of emotional support and interaction patterns
url https://aging.jmir.org/2024/1/e60050
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