Social media discussions about long-term care and the COVID-19 pandemic

Castillo, Louise I R; Hadjistavropoulos, Thomas; Beahm, Janine D.

doi:10.1016/j.jaging.2022.101076

Cited by 4 publications

(1 citation statement)

References 57 publications

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“…The COVID-19 pandemic has ampli ed the situation. Previous studies indicated that some media reports and social media discussions related to LTCHs resulted in furthering the negative impact of LTCHs (42)(43)(44). Such a negative impact could likely lead to a reduction in the attractiveness of the sector to individuals interested in employment in the LTC sector and erode the public trust of current and prospective residents and family caregivers.…”

Section: Knowledge Translationmentioning

confidence: 99%

Conducting Technology Research in Long-Term Care Homes: Critical Reflections from Pan-Canadian Researchers

Hung,

Wong,

Bharucha

et al. 2024

Preprint

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Background The global population of older adults is growing, presenting opportunities to enhance care in long-term care homes (LTCHs). Technological advancements offer the potential to address healthcare challenges, such as improving residents' quality of life and social connectedness. However, there is often a mismatch between developed technologies and the actual needs of residents and staff, leading to poor adoption and sustainability. This gap underscores the need for research on developing and implementing technology in LTCHs. Researchers conducting these studies face unique challenges which need to be better explored in the existing literature. Understanding these challenges is crucial for enhancing technology adoption and ensuring its sustainability in LTCHs.Methods This study reflects on two technology implementation projects in British Columbia and Ontario, Canada. Researchers from the Telepresence Robot and Mouvmat projects participated in four reflection sessions. The discussions were transcribed and analyzed using reflexive thematic analysis. Our analysis by graduate students and nursing researchers in the team, identified themes and gained useful insight into their experiences, learnings, and recommendations.Results Both projects aimed to enhance the quality of life for LTC residents. The Telepresence Robot project facilitated virtual communication between residents and their families, facing challenges such as training, staff shortages, and infrastructural limitations. Strategies included frequent check-ins with families, creating appropriate training materials, building trust with staff, and co-building solutions to infrastructural issues. Similarly, the Mouvmat project, a co-designed exergaming technology, dealt with recruitment challenges, staff shortages, and demographic changes in LTCH residents. The team used flexible recruitment strategies, virtual orientations, staff engagement tactics and personalized support. The lessons learnt highlighted the need for flexible and adaptive strategies in conducting research LTCHs.Conclusion The two projects underscore the complex challenges of technology research in LTCHs. The study calls for structural support, partnerships between academics and practice, and efforts to combat ageism in technology use. Researchers need support for knowledge translation and sharing findings to highlight the value of staff participation and showcase research benefits. This reinforces the essential role of research in improving care quality in LTCHs.

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Section: Knowledge Translationmentioning

confidence: 99%

Conducting Technology Research in Long-Term Care Homes: Critical Reflections from Pan-Canadian Researchers

Hung,

Wong,

Bharucha

et al. 2024

Preprint

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Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review

Zhang,

Fu,

Lai

et al. 2024

J Med Internet Res

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Background The internet community has become a significant source for researchers to conduct qualitative studies analyzing users’ views, attitudes, and experiences about public health. However, few studies have assessed the ethical issues in qualitative research using social media data. Objective This study aims to review the reportage of ethical considerations in qualitative research utilizing social media data on public health care. Methods We performed a scoping review of studies mining text from internet communities and published in peer-reviewed journals from 2010 to May 31, 2023. These studies, limited to the English language, were retrieved to evaluate the rates of reporting ethical approval, informed consent, and privacy issues. We searched 5 databases, that is, PubMed, Web of Science, CINAHL, Cochrane, and Embase. Gray literature was supplemented from Google Scholar and OpenGrey websites. Studies using qualitative methods mining text from the internet community focusing on health care topics were deemed eligible. Data extraction was performed using a standardized data extraction spreadsheet. Findings were reported using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. Results After 4674 titles, abstracts, and full texts were screened, 108 studies on mining text from the internet community were included. Nearly half of the studies were published in the United States, with more studies from 2019 to 2022. Only 59.3% (64/108) of the studies sought ethical approval, 45.3% (49/108) mentioned informed consent, and only 12.9% (14/108) of the studies explicitly obtained informed consent. Approximately 86% (12/14) of the studies that reported informed consent obtained digital informed consent from participants/administrators, while 14% (2/14) did not describe the method used to obtain informed consent. Notably, 70.3% (76/108) of the studies contained users’ written content or posts: 68% (52/76) contained verbatim quotes, while 32% (24/76) paraphrased the quotes to prevent traceability. However, 16% (4/24) of the studies that paraphrased the quotes did not report the paraphrasing methods. Moreover, 18.5% (20/108) of the studies used aggregated data analysis to protect users’ privacy. Furthermore, the rates of reporting ethical approval were different between different countries (P=.02) and between papers that contained users’ written content (both direct and paraphrased quotes) and papers that did not contain users’ written content (P<.001). Conclusions Our scoping review demonstrates that the reporting of ethical considerations is widely neglected in qualitative research studies using social media data; such studies should be more cautious in citing user quotes to maintain user privacy. Further, our review reveals the need for detailed information on the precautions of obtaining informed consent and paraphrasing to reduce the potential bias. A national consensus of ethical considerations such as ethical approval, informed consent, and privacy issues is needed for qualitative research of health care using social media data of internet communities.

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The #SeePainMoreClearly Phase II Pain in Dementia Social Media Campaign: Implementation and Evaluation Study

Castillo,

Tran,

Brachaniec

et al. 2024

JMIR Aging

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Background Social media platforms have been effective in raising awareness of the underassessment and undertreatment of pain in dementia. Objective After a successful pilot campaign, we aimed to scale our pain-in-dementia knowledge mobilization pilot initiative (ie, #SeePainMoreClearly) to several social media platforms with the aid of a digital media partner. The goal of the initiative was to increase awareness of the challenges in the assessment and management of pain among people with dementia. A variety of metrics were implemented to evaluate the effort. Through this work, we endeavored to highlight key differences between our pilot initiative (which was a grassroots initiative), focusing largely on Twitter and YouTube, and the current science-media partnership. We also aimed to generate recommendations suitable for other social media campaigns related to health or aging. Methods Evidence-based information about pain in dementia was summarized into engaging content (eg, videos) tailored to the needs of various knowledge users (eg, health professionals, families, and policy makers). We disseminated information using Facebook (Meta Platforms), Twitter (X Corp), YouTube (Alphabet Inc), Instagram (Meta Platforms), and LinkedIn (LinkedIn Corp) and measured the success of the initiative over a 12-month period (2020 to 2021). The evaluation methods focused on web analytics and questionnaires related to social media content. Knowledge users’ web responses about the initiative and semistructured interviews were analyzed using thematic analysis. Results During the course of the campaign, >700 posts were shared across all platforms. Web analytics showed that we drew >60,000 users from 82 countries to our resource website. Of the social media platforms used, Facebook was the most effective in reaching knowledge users (ie, over 1,300,000 users). Questionnaire responses from users were favorable; interview responses indicated that the information shared throughout the initiative increased awareness of the problem of pain in dementia and influenced respondent behavior. Conclusions In this investigation, we demonstrated success in directing knowledge users to a resource website with practical information that health professionals could use in patient care along with pain assessment and management information for caregivers and people living with dementia. The evaluation metrics suggested no considerable differences between our pilot campaign and broader initiative when accounting for the length of time of each initiative. The limitations of large-scale health campaigns were noted, and recommendations were outlined for other researchers aiming to leverage social media as a knowledge mobilization tool.

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Social media discussions about long-term care and the COVID-19 pandemic

Cited by 4 publications

References 57 publications

Conducting Technology Research in Long-Term Care Homes: Critical Reflections from Pan-Canadian Researchers

Conducting Technology Research in Long-Term Care Homes: Critical Reflections from Pan-Canadian Researchers

Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review

The #SeePainMoreClearly Phase II Pain in Dementia Social Media Campaign: Implementation and Evaluation Study

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