Rural Dementia Caregivers in Southwest Texas: An Exploratory Study of Advance Directives and End-of-Life Proxy Decision Making.

For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities. [Journal of Gerontological Nursing, 45(9), 11-17.].

Mobile Health, Information Preferences, and Surrogate Decision-Making Preferences of Family Caregivers of People With Dementia in Rural Hispanic Communities: Cross-Sectional Questionnaire Study.

BACKGROUND: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia. OBJECTIVE: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers' preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers' mobile device usage and their desire for receiving information via mobile devices. METHODS: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities. RESULTS: More women than men were in the patient group (χ21=17.2, P<.001) and in the caregiver group (χ21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregivers' desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006). CONCLUSIONS: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.

The Sociotechnical Construction of Distrust during the Covid-19 Pandemic.

What were the impacts of the Covid-19 pandemic on trust in public health information, and what can be done to rebuild trust in public health authorities? This essay synthesizes insights from science and technology studies, information studies, and bioethics to explore sociotechnical factors that may have contributed to the breakdown of trust in public health information during the Covid-19 pandemic. The field of science and technology studies lays out the dynamic nature of facts, helping to explain rapid shifts in public health messaging during Covid-19 and reasons they produced a lack of trust in public health authorities. The information field looks at how facts are sociotechnically constructed through systems of classification, illustrating how extrascientific factors influence public health authorities. Putting these perspectives alongside bioethics principles raises additional factors to consider. The goal of this essay is to learn from past failures to point toward a brighter future where trust in public health authorities can be rebuilt, not on faith, but rather through striving for calibrated trust within which, through a virtuous circle, trust is validated.

Misinformation and COVID-19 vaccine hesitancy.

BACKGROUND: COVID-19 vaccine hesitancy has emerged as a major public health challenge. Although medical and scientific misinformation has been known to fuel vaccine hesitancy in the past, misinformation surrounding COVID-19 seems to be rampant, and increasing evidence suggests that it is contributing to COVID-19 vaccine hesitancy today. The relationship between misinformation and COVID-19 vaccine hesitancy is complex, however, and it is relatively understudied. METHODS: In this article, we report qualitative data from two related but distinct studies from a larger project. Study 1 included semi-structured, open-ended interviews conducted in October-November 2020 via phone with 30 participants to investigate the relationship between misinformation and COVID-19 vaccine hesitancy. Study 1's results then informed the design of open-ended questions for Study 2, an online survey conducted in May-June 2021 to consider the relationship between misinformation and vaccine hesitancy further. The data were examined with thematic analysis. RESULTS: Study 1 led to the identification of positive and negative themes related to attitudes toward COVID-19 vaccines. In Study 2, responses from vaccine-hesitant participants included six categories of misinformation: medical, scientific, political, media, religious, and technological. Across both Study 1 and Study 2, six vaccine hesitancy themes were identified from the data: concerns about the vaccines' future effects, doubts about the vaccines' effectiveness, commercial profiteering, preference for natural immunity, personal freedom, and COVID-19 denial. CONCLUSIONS: The relationship between misinformation and vaccine hesitancy is complicated. Various types of misinformation exist, with each related to a specific type of vaccine hesitancy-related attitude. Personal freedom and COVID-19 denial are vaccine attitudes of particular interest, representing important yet understudied phenomena. Medical and scientific approaches may not be sufficient to combat misinformation based in religion, media, or politics; and public health officials may benefit from partnering with experts from those fields to address harmful misinformation that is driving COVID-19 vaccine hesitancy.

Older Adults' Trust and Distrust in COVID-19 Public Health Information: Qualitative Critical Incident Study.

BACKGROUND: The COVID-19 infodemic has imposed a disproportionate burden on older adults who face increased challenges in accessing and assessing public health information, but little is known about factors influencing older adults' trust in public health information during COVID-19. OBJECTIVE: This study aims to identify sources that older adults turn to for trusted COVID-19 public health information and factors that influence their trust. In addition, we explore the relationship between public health information sources and trust factors. METHODS: Adults aged 65 years or older (N=30; mean age 71.6, SD 5.57; range 65-84 years) were recruited using Prime Panels. Semistructured phone interviews, guided by critical incident technique, were conducted in October and November 2020. Participants were asked about their sources of COVID-19 public health information, the trustworthiness of that information, and factors influencing their trust. Interview data were examined with thematic analysis. RESULTS: Mass media, known individuals, and the internet were the older adults' main sources for COVID-19 public health information. Although they used social media for entertainment and personal communication, the older adults actively avoided accessing or sharing COVID-19 information on social media. Factors influencing their trust in COVID-19 public health information included confirmation bias, personal research, resigned acceptance, and personal relevance. CONCLUSIONS: These findings shed light on older adults' use of information sources and their criteria for evaluating the trustworthiness of public health information during a pandemic. They have implications for the future development of effective public health communication, policies, and interventions for older adults during health crises.

Trust in COVID-19 public health information.

Understanding the factors that influence trust in public health information is critical for designing successful public health campaigns during pandemics such as COVID-19. We present findings from a cross-sectional survey of 454 US adults-243 older (65+) and 211 younger (18-64) adults-who responded to questionnaires on human values, trust in COVID-19 information sources, attention to information quality, self-efficacy, and factual knowledge about COVID-19. Path analysis showed that trust in direct personal contacts (B = 0.071, p = .04) and attention to information quality (B = 0.251, p < .001) were positively related to self-efficacy for coping with COVID-19. The human value of self-transcendence, which emphasizes valuing others as equals and being concerned with their welfare, had significant positive indirect effects on self-efficacy in coping with COVID-19 (mediated by attention to information quality; effect = 0.049, 95% CI 0.001-0.104) and factual knowledge about COVID-19 (also mediated by attention to information quality; effect = 0.037, 95% CI 0.003-0.089). Our path model offers guidance for fine-tuning strategies for effective public health messaging and serves as a basis for further research to better understand the societal impact of COVID-19 and other public health crises.

The use of ICT during COVID-19.

ICTs are pivotal in the existing social order and especially during the COVID-19 global pandemic. This panel focuses on the use of ICTs by different actors, including individuals, nonprofit organizations, and governments around the globe in responding to this COVID crisis. We tackle three essential questions about ICTs and the global crisis. First, what role do ICTs play in a global crisis? Second, how do ICTs affect social order when tensions between control, autonomy, and power shift? Third, what are the theoretical and practical implications of ICT use during a global health crisis? Each of the panelists will discuss their ongoing research in social informatics or health informatics as relates to the panel theme and central questions in order to provide a holistic view of the role of ICTs during this global pandemic.

Global health crises are also information crises: A call to action.

In this opinion paper, we argue that global health crises are also information crises. Using as an example the coronavirus disease 2019 (COVID-19) epidemic, we (a) examine challenges associated with what we term "global information crises"; (b) recommend changes needed for the field of information science to play a leading role in such crises; and (c) propose actionable items for short- and long-term research, education, and practice in information science.

End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids.

OBJECTIVES: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research. METHODS: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps. RESULTS: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers' preferences for different types and amounts of information necessary to make decisions consistent with patients' values. CONCLUSION: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers' decision making. More diverse samples are needed.

Community response grids: using information technology to help communities respond to bioterror emergencies.

Access to accurate and trusted information is vital in preparing for, responding to, and recovering from an emergency. To facilitate response in large-scale emergency situations, Community Response Grids (CRGs) integrate Internet and mobile technologies to enable residents to report information, professional emergency responders to disseminate instructions, and residents to assist one another. CRGs use technology to help residents and professional emergency responders to work together in community response to emergencies, including bioterrorism events. In a time of increased danger from bioterrorist threats, the application of advanced information and communication technologies to community response is vital in confronting such threats. This article describes CRGs, their underlying concepts, development efforts, their relevance to biosecurity and bioterrorism, and future research issues in the use of technology to facilitate community response.