Can Technology-Based Social Memory Aids Improve Social Engagement? Perceptions of a Novel Memory Aid for Persons With Memory Concerns.

Social withdrawal and isolation are frequently experienced among people with cognitive impairment, Alzheimer's disease, and Alzheimer's disease related dementias. Few assistive technologies exist to support persons with memory concerns' (PWMC) continuing social engagement. This study aimed to understand PWMC and family caregivers' initial perspectives on the feasibility and utility of a wearable technology-based social memory aid. We recruited 20 dyads, presented the memory aid, and conducted semi-structured interviews from June to August 2020 over Zoom video conferencing. Interviews were transcribed and analyzed using thematic analysis. Overall, participants anticipated the technology could reduce socializing-related stress now and in the future for both members of the care dyad. However, certain features of the memory aid (e.g., visitors must have the app), could limit utility, and participants provided recommendations to enhance the tool. Our findings will inform future technology-enabled social memory aid development for PWMC and family caregivers.

Achieving the potential of mHealth in medicine requires challenging the ethos of care delivery.

Mobile Health (mHealth) interventions have received a mix of praise and excitement, as well as caution and even opposition over recent decades. While the rapid adoption of mHealth solutions due to the COVID-19 pandemic has weakened resistance to integrating these digital approaches into practice and generated renewed interest, the increased reliance on mHealth signals a need for optimizing development and implementation. Despite an historically innovation-resistant medical ethos, mHealth is becoming a normalized supplement to clinical practice, highlighting increased demand. Reaching the full potential of mHealth requires new thinking and investment. The current challenge to broaden mHealth adoption and to ensure equity in access may be overcoming a "design purgatory," where innovation fails to connect to practice. We recommend leveraging the opportunity presented by the COVID-19 pandemic to disrupt routine practice and with a new focus on theory-driven replicability of mHealth tools and strategies aimed at medical education and professional organizations.

Older Adults' Computer-Mediated Communication (CMC) Engagement Following COVID-19 and Its Impact on Access to Community, Information, and Resource Exchange: A Longitudinal, Qualitative Study.

Following COVID-19, the CDC asked individuals to social distance and state and local authorities nationwide began issuing curfews and recommendations to "shelter-in-place." Known to be more susceptible to the negative effects of COVID-19 and often coping with higher levels of social isolation, many worried that older adults' mental health would suffer. While computer-mediated communication (CMC) is on the rise among older adults, whether and how older adults leverage the social benefits of CMC remains underexplored. This study assesses older adults' CMC use after COVID and the impact of CMC engagement on access to connection, information, and resources. We follow 22 older adults over 6 weeks, using longitudinal qualitative surveys to study CMC use patterns and mental health outcomes. Results revealed that while older adults exhibited purpose-driven CMC engagement, limited integration into larger online communities restricted access to up-to-the-minute information, notably early in the pandemic. Longitudinal findings show progressively less engagement with online news and information, withdrawal from online social engagement, and a progressive relaxing of social distancing. This study sheds light on how best to reach older adults following disaster, and where older adults may be disadvantaged as social media becomes a modern "emergency broadcast system."

Social media as a modern Emergency Broadcast System: A longitudinal qualitative study of social media during COVID-19 and its impacts on social connection and social distancing compliance.

In the wake of COVID-19 social distancing recommendations, social media assumed a central - if unofficial - role in ensuring that individuals remained informed and connected throughout the pandemic. Yet while research shows that social media can be an effective platform for connecting individuals socially and fostering social support exchanges, both the platforms and the support exchanged therein have been mired in considerable controversies regarding their use as a tool for positive social engagement. The goal of this study is to qualitatively evaluate longitudinal changes to social media engagement during social distancing recommendations and orders to shelter-in-place. To do this, we collected longitudinal, qualitative survey data from a group of adults over the eight weeks during which most states had issued orders to shelter-in-place. We analyze data for evidence of social connection, stress reduction, and support exchange, and evaluate the impact of online social ties on staying informed and on compliance with CDC recommendations and shelter-in-place orders. Results showed a clear longitudinal evolution of users' online social engagement. Early use was characterized by agentic purposeful engagement, information sharing, and community resource mobilization. However, over time these patterns gave way to more passive use characterized by listlessness, contentiousness and misinformation as the pandemic wore on in weeks. As social media comes to occupy an increasingly important role in the exchange of information (and misinformation) this study has important implications for the health of users and the role of social media in future disasters, including how social media impacts both stress and health related behaviors.

Online Support Seeking and Breast Cancer Patients: Changes in Support Seeking Behavior following Diagnosis and Transition off Cancer Therapy.

Transitions in breast cancer care are associated with significant increases in stress and anxiety, and this stress can negatively impact mental and physical health. Social support has been shown to alleviate such distress, but whether, how, and how often social support is accessed through existing support networks is unclear. Our study examines changes in social media use following breast cancer diagnosis and treatment, using hand-coded longitudinal data from 30 breast cancer survivors' Facebook pages for the 6 months surrounding cancer diagnosis and for the 6 months surrounding transition off cancer therapy. Results revealed that following diagnosis, there was a significant increase in posting behavior and self-disclosure. However, this increase in posts did not correspond to an increase in support requests. In addition, while participants' primary support requests were for resources, support provided tended to be lower-cost emotional support. Finally, temporal maps indicated that participants started off increasing their engagement but withdrew over time. Our findings suggest that Facebook offered participants a platform for continued social engagement and self-disclosure - but showed several indications that support was principally low-effort, limited quality, and ill-fitting.

The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study.

BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management. OBJECTIVE: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. METHODS: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status. RESULTS: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. CONCLUSIONS: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.

Online social support among breast cancer patients: longitudinal changes to Facebook use following breast cancer diagnosis and transition off therapy.

PURPOSE: Active social engagement, both on and offline, is widely recognized as an important buffer against the negative effects of cancer-related stress. Nevertheless, studies show that social stigma can lead to a decrease in available social support following cancer diagnosis. This study examines whether Facebook friends provide continuous, health-promoting social support to breast cancer patients following transitions in care. METHODS: To examine support provided to breast cancer patients, we hand-coded 21,291 status updates and wall posts with respect to both post content and support exchange. We then use descriptive statistics, pairwise t tests, and temporal maps to show whether posts received more likes, comments, or unique commenters following breast cancer diagnosis and the post content that was most likely to garner positive responses from Facebook friends. RESULTS: Results showed an initial increase across all three support metrics (likes, comments, and unique commenters) after cancer diagnosis but that all three metrics decrease steadily over time. Results also revealed significant decreases in the average number of comments and number of commenters following transition off cancer treatment. CONCLUSIONS: Taken together, our results reveal that while support is available through Facebook, support may be sporadic, characterized by limited engagement and low cost. There is also limited support available through Facebook to weather the stress of transition off cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: Facebook is an important feature in people's lives, particularly among the demographic most impacted by breast cancer. Our results suggest that social media can be useful in accessing support but should be used with caution.

Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment.

BACKGROUND: Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. OBJECTIVE: The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. METHODS: We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. RESULTS: A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. CONCLUSIONS: Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange.

Refugees, Post-Migration Stress, and Internet Use: A Qualitative Analysis of Intercultural Adjustment and Internet Use Among Iraqi and Sudanese Refugees to the United States.

Post-migration stressors represent significant obstacle to refugee adjustment, and continued exposure to post-migration stressors can negatively affect mental and physical health. Communities of support maintained over the Internet may provide a sense of constancy and reliability that may insulate against the negative effects of stress. We conducted five focus group interviews with Iraqi and Sudanese refugees to understand how refugees use the Internet to access support in their daily lives. Four trends were observed: (a) Internet use was related to culture of origin, (b) refugees were reluctant to explore online, (c) children served as brokers of online knowledge, and (d) limited Internet access is associated with increased time and financial obligations. This study aims to contribute to theory on Internet-mediated social support and to refugee health by creating smoother pathways to self-sufficiency and allowing refugees to exhibit agency in constructing and maintaining online networks of support.