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.

The Use of Technology Among Persons With Memory Concerns and Their Caregivers in the United States During the COVID-19 Pandemic: Qualitative Study.

BACKGROUND: Stay-at-home orders and other public health measures designed to mitigate the spread of COVID-19 have increased isolation among persons with memory concerns (PWMCs: individuals diagnosed with cognitive impairment or Alzheimer disease or related dementias). The pandemic has also exacerbated challenges for family members who care for PWMCs. Although technology has demonstrated the potential to improve the social connections and mental health of PWMCs and their family caregivers (CGs), previous research shows that older adults may be reluctant to adopt new technologies. OBJECTIVE: We aimed to understand why and how some PWMCs and their CGs altered their use of mainstream technology, such as smartphones and fitness trackers, and assistive technology to adapt to lifestyle changes (eg, increased isolation) during the COVID-19 pandemic. METHODS: Using data collected in 20 qualitative interviews from June to August 2020 with 20 PWMCs and family CG dyads, we assessed changes in and barriers to everyday technology use following the implementation of COVID-19 mitigation strategies in the United States. Zoom videoconferencing was utilized to conduct the interviews to protect the health of the participants who were primarily older adults. RESULTS: Using qualitative thematic analysis, we identified 3 themes that explained motivations for using technology during a pandemic: (1) maintaining social connections, (2) alleviating boredom, and (3) increasing CG respite. Results further revealed lingering barriers to PWMC and CG adoption of technologies, including: (1) PWMC dependence upon CGs, (2) low technological literacy, and (3) limitations of existing technology. CONCLUSIONS: This in-depth investigation suggests that technology can provide PWMCs with more independence and offer CGs relief from CG burden during periods of prolonged isolation.

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.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents.

BACKGROUND: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective. METHODS: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis. RESULTS: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors' overall well-being, including financial and health insurance literacy. CONCLUSIONS: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.

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.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

BACKGROUND: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. METHODS: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. RESULTS: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. CONCLUSIONS: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.

Domestic migration and mobile phones: A qualitative case study focused on recent migrants to Ouagadougou, Burkina Faso.

Migration has long been used as a strategy for livelihood diversification in rural, subsistence communities. Yet in order for migration to effectively serve as a livelihood diversification strategy, it should meet certain conditions: migration should ease financial burdens, should confer access to economically valuable resources and information, and should broaden social networks. Using qualitative data gathered in 25 interviews with rural migrants to Ouagadougou, Burkina Faso, we examine how mobile phone technology has impacted migration as a livelihood diversification strategy. Our results show that while mobile phones facilitate migration, the advantages conferred may benefit migrants at the expense of the home communities. Mobile phones alleviate financial constraints, enable access to broader networks, and facilitate informational and resource support among migrants. Our results show limited evidence of migrants using mobile phone technology to provide resources or information to the home community. Our results highlight the need to reconsider the ways in which migration can be used as a livelihood diversification strategy in light of changing communication technologies to promote the economic success of both migrants and their home communities.

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.

Ethical issues in using Twitter for population-level depression monitoring: a qualitative study.

BACKGROUND: Recently, significant research effort has focused on using Twitter (and other social media) to investigate mental health at the population-level. While there has been influential work in developing ethical guidelines for Internet discussion forum-based research in public health, there is currently limited work focused on addressing ethical problems in Twitter-based public health research, and less still that considers these issues from users' own perspectives. In this work, we aim to investigate public attitudes towards utilizing public domain Twitter data for population-level mental health monitoring using a qualitative methodology. METHODS: The study explores user perspectives in a series of five, 2-h focus group interviews. Following a semi-structured protocol, 26 Twitter users with and without a diagnosed history of depression discussed general Twitter use, along with privacy expectations, and ethical issues in using social media for health monitoring, with a particular focus on mental health monitoring. Transcripts were then transcribed, redacted, and coded using a constant comparative approach. RESULTS: While participants expressed a wide range of opinions, there was an overall trend towards a relatively positive view of using public domain Twitter data as a resource for population level mental health monitoring, provided that results are appropriately aggregated. Results are divided into five sections: (1) a profile of respondents' Twitter use patterns and use variability; (2) users' privacy expectations, including expectations regarding data reach and permanence; (3) attitudes towards social media based population-level health monitoring in general, and attitudes towards mental health monitoring in particular; (4) attitudes towards individual versus population-level health monitoring; and (5) users' own recommendations for the appropriate regulation of population-level mental health monitoring. CONCLUSIONS: Focus group data reveal a wide range of attitudes towards the use of public-domain social media "big data" in population health research, from enthusiasm, through acceptance, to opposition. Study results highlight new perspectives in the discussion of ethical use of public data, particularly with respect to consent, privacy, and oversight.

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.