Objectives The COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19. Design This study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (n = 125) and semistructured interviews with a subset of the sample (n = 20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19. Setting and Participants Participants included 125 family caregivers of persons with dementia living in residential LTC. Methods Thematic analysis was used to identify themes capturing caregivers' experiences. Results In addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives. Conclusions and Implications This qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.
Introduction: Community engagement is important for advancing Clinical and Translational Science (CTS), but face-to-face engagement has limited reach and scale. We examined the feasibility of a novel virtual Facebook community platform for public engagement on health research statewide in Minnesota. Methods: The Facebook platform, MN Research Link, was evaluated from June 19, 2019 to June 30, 2020. Facebook advertisements and boosts were used to recruit followers. Content, based on prior formative work, included health research information and interactive postings (e.g., live interviews with researchers). Standard metrics obtained from Facebook analytics included participation (followers), content reach (views), and engagement (likes, shares, comments, clicks). Results: During the 12-month period, we acquired 1406 followers (31% rural residents), with a retention of followers of 99.7%. Mean number of views per month was 9379.83 (Mdn = 2791, range 724-41,510). Engagement metrics indicated a mean of 535.2 likes, shares, comments, and/or clicks per month (Mdn = 296.5, range 55-1535). The page continued to acquire new followers, but a slight decrease in engagement was observed in the final months after state COVID-19 mitigation strategies were implemented. Conclusion: As the complexity of CTS continues to grow, along with social distancing measures resulting from the COVID-19 pandemic, the availability of virtual digital platforms to reach and engage community stakeholders in conversations about health and research has increasing importance. Preliminary findings from this program evaluation indicate that a Facebook community platform is feasible to engage Minnesota residents in conversations around health and research topics. Future work will evaluate its potential for reach, scale, and sustainability.
Background Estimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. Objective The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. Methods A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. Results Quantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. Conclusions CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.
Persons with dementia living in long-term care settings have been especially affected by the COVID-19 pandemic, and their family caregivers have had to cope with numerous additional stressors during this time. We conducted 20 semi-structured interviews and gathered open-ended survey data from N=104 caregivers participating in an ongoing intervention trial at the start of the COVID-19 pandemic. Open-ended questions explored the difficulties caregivers have experienced in caring for and supporting a relative in long-term residential care. Caregivers provided their perspectives about services and supports that have facilitated coping with uncertainty, anxiety, and loss during the pandemic, and identified resources and strengths they have found helpful in caring for their relatives. Thematic analysis was used to identify themes reflecting the key challenges and supports that have emerged for caregivers, and to highlight caregivers' recommendations for promoting their and their relatives' well-being during this crisis.
BACKGROUND Community-engagement can make a substantial difference in health outcomes, and strengthen the capacity to deal with disruptive public health events, such as the COVID-19 pandemic. Social media platforms such as Facebook is a promising avenue to reach the broader public and enhance access to clinical and translational science and requires further evaluations from the scientific community. OBJECTIVE To describe the use of live community events to enhance communication about clinical and health research through a Facebook platform (MN Research Link) with a Minnesota statewide community. We examined variables associated with video engagement including video length and type of posting. METHODS From June 2019 to February 2021, we streamed 36 events on the MN Research Link Facebook public page. Events highlighted different investigators’ clinical and health research in the areas of mental health, health and wellness, chronic diseases and immunology/infectious diseases. Standard Facebook analytics were used to determine the number of views, total minutes viewed, average video watch time, and audience retention. Engagement score was calculated as the total number of interactions (likes, shares, and comments) divided by total number of followers (N=1437), expressed as a percentage. RESULTS The 36 live events averaged 17 minutes and 32 seconds in duration. Total minutes viewed by all 36 videos was 38 hours 43 minutes and 12 seconds. Viewers spent an average of 23 seconds watching each piece of video content. Audience retention at the halfway point for each video was 16%. After adjusting for video length, research presentations and promotional videos had the highest retention score. Events that included audience participation had higher retention scores compared to events without audience participation. CONCLUSIONS The use of live community events showed adequate levels of engagement from participants. A view time of 23 secs, on average per video, suggests that short, informational videos engage viewers and is consistent with an “advertorial” approach to using videos as an event teaser for health and research information. Live community events on Facebook can be an effective method of advancing health promotion and CTS content, however certain types of events have more impact on engagement than others. This project found that research presentations had the highest engagement followed by panels while public health communications had the least engagement.
Background Community engagement can make a substantial difference in health outcomes and strengthen the capacity to deal with disruptive public health events such as the COVID-19 pandemic. Social media platforms such as Facebook are a promising avenue to reach the broader public and enhance access to clinical and translational science, and require further evaluation from the scientific community. Objective This study aims to describe the use of live community events to enhance communication about clinical and health research through a Facebook platform case study (Minnesota [MN] Research Link) with a Minnesota statewide community. We examined variables associated with video engagement including video length and type of posting. Methods From June 2019 to February 2021, MN Research Link streamed 38 live community events on its public Facebook page, MN Research Link. Live community events highlighted different investigators’ clinical and health research in the areas of mental health, health and wellness, chronic diseases, and immunology/infectious diseases. Facebook analytics were used to determine the number of views, total minutes viewed, engagement metrics, and audience retention. An engagement rate was calculated by the total number of interactions (likes, shares, and comments) divided by the total length of the live event by the type of live community event. Results The 38 live community events averaged 23 minutes and 1 second in duration. The total time viewed for all 38 videos was 10 hours, 44 minutes, and 40 seconds. Viewers’ watch time averaged 23 seconds of content per video. After adjusting for video length, promotional videos and research presentations had the highest engagement and retention rates. Events that included audience participation did not have higher retention rates compared to events without audience participation. Conclusions The use of live community events showed adequate levels of engagement from participants. A view time of 23 seconds on average per video suggests that short informational videos engage viewers of clinical and translational science content. Live community events on Facebook can be an effective method of advancing health promotion and clinical and translational science content; however, certain types of events have more impact on engagement than others.
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