Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

Du, Yan; Paiva, Kristi; Cebula, Adrian V; Kim, Seon Min; Lopez, Katrina; Li, Chengdong; Myneni, Sahiti; Seshadri, Sudha; Wang, Jing

doi:10.2196/17851

Cited by 16 publications

(20 citation statements)

References 60 publications

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“…People living with chronic conditions use social media to share information, garner social support, and raise awareness and advocate for themselves and others (Berry et al, 2017;Gabarron et al, 2015;Hemsley et al, 2015;Himelboim & Han, 2014;Tsuya et al, 2014). Consistent with this, an emerging body of research has focused on the social media posts of people living with dementia and their caregivers (Bachmann, 2020;Craig & Strivens, 2016;Du et al, 2020;Anderson et al, 2017;McLennon et al, 2021;Talbot et al, 2020a;. People living with dementia use social media platforms as a way to participate in activism, connect and share support, and disseminate information (Clare et al, 2008;Craig & Strivens, 2016;Lorenz et al, 2017;Rodriquez, 2013).…”

Section: Introductionmentioning

confidence: 99%

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

et al. 2022

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The COVID-19 pandemic has placed a tremendous burden on all of society, particularly among vulnerable populations such as people living with dementia and their caregivers. Efforts to understand the impact of the COVID-19 pandemic on those living with dementia are crucial towards addressing needs during the pandemic and beyond. This qualitative descriptive study includes a thematic analysis of 6938 tweets from March 17–24, 2020, that included direct or indirect references to COVID-19 and at least one of the following terms/hashtags: Alzheimer, #Alzheimer, dementia, and #dementia. Five themes were identified: continuing care, finding support, preventing spread of COVID-19, maintaining human rights, and the impact of the pandemic on the daily lives of people living with dementia. People living with dementia and their families faced unique challenges related to caregiving, maintaining social connectedness while trying to follow public health guidelines, and navigating the convergence of COVID-19 and dementia-related stigma. Data from Twitter can be an effective means to understand the impacts of public health emergencies among those living with dementia and how to address their needs moving forward by highlighting gaps in practice, services, and research.

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Section: Introductionmentioning

confidence: 99%

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

et al. 2022

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“…ADRD caregivers have increasingly sought support and shared their experiences through various general-purpose online social platforms, such as Twitter (Berry, Lobban et al 2017), Facebook (Pagán-Ortiz, Cortés et al 2014, as well as online health communities like ALZConnected (Du, Paiva et al 2020). While it has been shown that participating in online communities has certain benefits (e.g., a reduction in depressive symptoms) (Wilkerson, Brady et al 2018), the collection of studies to date are limited in that they focused only on a single ADRD community, such as r/Alzheimers on Reddit (Wang, Zou et al 2021), which does not provide a complete picture of the challenges that ADRD caregivers confront.…”

Section: Introductionmentioning

confidence: 99%

“Rough Day … Need a Hug”: Learning Challenges and Experiences of the Alzheimer’s Disease and Related Dementia Caregivers on Reddit

Malin

Song

et al. 2022

ICWSM

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Alzheimer’s disease and related dementia (ADRD) is a collection of disorders involving mental deterioration, which is often quite distressing for the individuals and those caring for them. Online social media platforms have become popular environments for people to share their ADRD caring challenges and experiences. Despite encouraging findings in the literature regarding online support for ADRD caregivers, studies to date have focused only on a single online community about ADRD, which leads to an incomplete picture of the needs of ADRD caregivers. Additionally, the large volume of data from online communities makes it challenging for both researchers and caregivers to efficiently discover discussions about ADRD care. In this paper, we focus on Reddit, an online rating and discussion platform that consists of many communities, or subreddits, and aim to analyze the topic difference regarding ADRD care between ADRD and non-ADRD subreddits. To do so, we first develop a two-stage classification framework to extract posts about ADRD care from the entire Reddit. Then, we apply structured topic modeling to investigate what has been discussed on ADRD care and how such discussions are prevalent in different types of subreddits. Our results show that non-ADRD subreddits contribute 68.5% of submissions of ADRD care, more than twice as many as ADRD subreddits. Moreover, non-ADRD subreddits are more likely to disclose legal and financial issues, negative relationships and mental health, while ADRD subreddits are more likely to talk about memory loss, sleeping and diet issues, the disease and clinical visits. Our findings suggest that research in this area should look into discussions beyond ADRD communities to gain a comprehensive understanding of ADRD caring experiences and challenges.

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“…There has been an increased creation of social media and online health communities to support those living with certain diseases [13]. Emerging studies have reported social media and online communities as promising approaches to promote CKD care through various ways such as for data collection and providing support.…”

Section: Introductionmentioning

confidence: 99%

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation’s online community

Dennis

Ramirez

et al. 2022

BMC Nephrol

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Background Self-management of chronic kidney disease (CKD) is one of the keys in improving CKD outcomes and quality of life. There has been an increased use of online health communities to share the experiences of those living with CKD. By analyzing the CKD online forum data, this study aims to: 1) understand the experiences and challenges of individuals living with CKD, and 2) explore how online communities may help CKD patients in improving CKD self-management. Methods Publicly available posts of peer interactions on the National Kidney Foundation’s online community for individuals affected by CKD were extracted in April 2021 using computer programming. A total of 20,436 posts were collected, of which 400 posts were analyzed using inductive thematic analysis, and saturation was reached. Two researchers coded each post independently, and discrepancies were discussed to reach consensus. Results The analysis identified seven themes: 1) Dynamics of CKD status, 2) CKD comorbidities, 3) Managing CKD and symptoms, 4) Life participation and outlook; 5) Navigating healthcare and clinical needs, 6) Medical tests and results; and 7) Support on the forum. The results revealed that comorbidities were common in CKD patients and early-stage CKD was not communicated in a timely manner to patients by the health care community; living with CKD challenged both CKD and caregivers; some common challenges included but were not limited to the management of a diet for CKD and co-morbidities (especially co-morbid diabetes), CKD dynamics and symptoms, and fear of/ways to prevent progression. Individuals living with CKD primarily used the online forum to share and seek information and emotional support for managing CKD (including co-morbidities). Conclusions Challenges of living with CKD were found not only in those with advanced kidney disease and those on dialysis, but also in those with early and middle stages. Information and emotional support from the online forum serve as a platform to empower CKD individuals with the knowledge, skills and confidence for CKD self-management. Proactive and innovative strategies with a combination of virtual and real settings to improve self-management for individuals with all-stage CKD needs to be explored and tailored.

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Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

Cited by 16 publications

References 60 publications

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

“Rough Day … Need a Hug”: Learning Challenges and Experiences of the Alzheimer’s Disease and Related Dementia Caregivers on Reddit

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation’s online community

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