Listening to Communities: Mixed-Method Study of the Engagement of Disadvantaged Mothers and Pregnant Women With Digital Health Technologies.

BACKGROUND: US health care providers are increasingly demanding patient engagement with digital health technologies to enroll in care, access personal health information, communicate with providers, and monitor their own health. Such engagement may be difficult for disadvantaged populations who may have limited health literacy, time constraints, or competing priorities. OBJECTIVE: We aimed to understand the extent of adoption and use of digital health tools and to identify key perceived psychological motivators of technology use among disadvantaged first-time pregnant women and mothers of young children. METHODS: We recruited women from health organizations serving low-income communities in the Midwest and on the East and West coasts. A total of 92 women participated in 14 focus groups. During each session, we administered worksheets that measured 3 utilization outcomes: the number of recent Web-based health-seeking activities, current use of digital health-management practices (eg, accessing personal health information, communicating with providers, and scheduling appointments), and potential adoption of digital health-management tools among low users or nonusers. Responses to the worksheets and to a pre-focus group survey on demographics, technology access, and motivators of use were examined to create user profiles. Separate regression models identified the motivators (eHealth literacy, internal health orientation, and trust in digital information) associated with these outcomes. Qualitative data were incorporated to illustrate the worksheet responses. RESULTS: Whereas 97% of the participants reported that they had searched for health information on the Internet in the past year, 42% did not engage in digital health-management practices. Among the low users and nonusers, 49% expressed interest in future adoption of digital health tools. Web-based health information-seeking activities were associated with digital health-management practices (P<.001). When controlling for covariates, eHealth literacy was positively correlated with the number of Web-based health-seeking activities (beta=.03, 95% CI 0.00-0.07). However, an internal health orientation was a much stronger correlate of digital health-management practices (beta=.13, 95% CI 0.02-0.24), whereas trust in digital information increased the odds of potential adoption (vs no adoption) in adjusted models (OR 5.21, 95% CI 0.84-32.53). Demographic characteristics were not important drivers of digital health use and few differences distinguished use among mothers and pregnant women. CONCLUSIONS: Seeking health information on the Internet may be an important gateway toward engaging in digital health-management practices. Notably, different consumer motivators influence digital health tool use. The relative contributions of each must be explored to design tools and interventions that enhance competencies for the management of self and child health among disadvantaged mothers and pregnant women. Unless we address disparities in digital health tool use, benefits from their use will accrue predominantly to individuals with the resources and skills to use technology effectively.

Telemedicine in Greenland: Citizens' Perspectives.

BACKGROUND: Telemedicine may have the possibility to provide better access to healthcare delivery for the citizens. Telemedicine in arctic remote areas must be tailored according to the needs of the local population. Therefore, we need more knowledge about their needs and their view of telemedicine. OBJECTIVE: The aim of this study has been to explore how citizens living in the Greenlandic settlements experience the possibilities and challenges of telemedicine when receiving healthcare delivery in everyday life. MATERIALS AND METHODS: Case study design was chosen as the overall research design. Qualitative interviews (n = 14) were performed and participant observations (n = 80 h) carried out in the local healthcare center in the settlements and towns. A logbook was kept and updated each day during the field research in Greenland. Observations were made of activities in the settlements. FINDINGS: Data collected on citizens' views about the possibilities of using telemedicine in Greenland revealed the following findings: Greenlandic citizens are positive toward telemedicine, and telemedicine can help facilitate improved access to healthcare for residents in these Greenlandic settlements. Regarding challenges in using telemedicine in Greenland, the geographical and cultural context hinders accessibility to the Greenlandic healthcare system, and telemedicine equipment is not sufficiently mobile. CONCLUSION: Greenlandic citizens are positive toward telemedicine and regard telemedicine as a facilitator for improved access for healthcare in the Greenlandic settlements. We have identified challenges, such as geographical and cultural context, that hinder accessibility to the Greenlandic healthcare system.

Personalized Telehealth in the Future: A Global Research Agenda.

As telehealth plays an even greater role in global health care delivery, it will be increasingly important to develop a strong evidence base of successful, innovative telehealth solutions that can lead to scalable and sustainable telehealth programs. This paper has two aims: (1) to describe the challenges of promoting telehealth implementation to advance adoption and (2) to present a global research agenda for personalized telehealth within chronic disease management. Using evidence from the United States and the European Union, this paper provides a global overview of the current state of telehealth services and benefits, presents fundamental principles that must be addressed to advance the status quo, and provides a framework for current and future research initiatives within telehealth for personalized care, treatment, and prevention. A broad, multinational research agenda can provide a uniform framework for identifying and rapidly replicating best practices, while concurrently fostering global collaboration in the development and rigorous testing of new and emerging telehealth technologies. In this paper, the members of the Transatlantic Telehealth Research Network offer a 12-point research agenda for future telehealth applications within chronic disease management.

Prevalence of pediatric epilepsy in low-income rural Midwestern counties.

Epilepsy is one of the most common disabling neurological disorders, but significant gaps exist in our knowledge about childhood epilepsy in rural populations. The present study assessed the prevalence of pediatric epilepsy in nine low-income rural counties in the Midwestern United States overall and by gender, age, etiology, seizure type, and syndrome. Multiple sources of case identification were used, including medical records, schools, community agencies, and family interviews. The prevalence of active epilepsy was 5.0/1000. Prevalence was 5.1/1000 in males and 5.0/1000 in females. Differences by age group and gender were not statistically significant. Future research should focus on methods of increasing study participation in rural communities, particularly those in which research studies are rare.

The ACTIVATE Digital Health Pilot Program for Diabetes and Hypertension in an Underserved and Rural Community.

BACKGROUND: Community health centers and patients in rural and agricultural communities struggle to address diabetes and hypertension in the face of health disparities and technology barriers. The stark reality of these digital health disparities were highlighted during the coronavirus disease 2019 pandemic. OBJECTIVES: The objective of the ACTIVATE (Accountability, Coordination, and Telehealth in the Valley to Achieve Transformation and Equity) project was to codesign a platform for remote patient monitoring and program for chronic illness management that would address these disparities and offer a solution that fit the needs and context of the community. METHODS: ACTIVATE was a digital health intervention implemented in three phases: community codesign, feasibility assessment, and a pilot phase. Pre- and postintervention outcomes included regularly collected hemoglobin A1c (A1c) for participants with diabetes and blood pressure for those with hypertension. RESULTS: Participants were adult patients with uncontrolled diabetes and/or hypertension (n = 50). Most were White and Hispanic or Latino (84%) with Spanish as a primary language (69%), and the mean age was 55. There was substantial adoption and use of the technology: over 10,000 glucose and blood pressure measures were transmitted using connected remote monitoring devices over a 6-month period. Participants with diabetes achieved a mean reduction in A1c of 3.28 percentage points (standard deviation [SD]: 2.81) at 3 months and 4.19 percentage points (SD: 2.69) at 6 months. The vast majority of patients achieved an A1c in the target range for control (7.0-8.0%). Participants with hypertension achieved reductions in systolic blood pressure of 14.81 mm Hg (SD: 21.40) at 3 months and 13.55 mm Hg (SD: 23.31) at 6 months, with smaller reductions in diastolic blood pressure. The majority of participants also reached target blood pressure (less than 130/80). CONCLUSION: The ACTIVATE pilot demonstrated that a codesigned solution for remote patient monitoring and chronic illness management delivered by community health centers can overcome digital divide barriers and show positive health outcomes for rural and agricultural residents.

Societal Need for Interdisciplinary Ageing Research: An International Alliance of Research Universities "Ageing, Longevity and Health" Stream (IARU-ALH) Position Statement.

Ageing is a global concern with major social, health, and economic implications. While individual countries seek to develop responses to immediate, pressing needs, international attention and collaboration is required to most effectively address the multifaceted challenges and opportunities an ageing global population presents in the longer term. The Ageing, Longevity and Health stream of the International Alliance of Research Universities (IARU-ALH) was built on a solid foundation of first-class interdisciplinary research and on innovative outreach and communication centres. This interdisciplinary network conducts projects that span biology, medicine, social sciences, epidemiology, public health, policy, and demography, and actively engages with the public and other societal stakeholders. Here we posit that such international interdisciplinary networks are needed and uniquely placed to address major challenges related to health and ageing and ultimately will produce new understanding and knowledge to promote the awareness of healthy ageing and encourage societal change via novel, science-informed interventions. Global interdisciplinary research presents great potential and opportunities to accelerate our understanding of human ageing and to produce new, more effective solutions to a pressing, complex problem. However, more focused, strategic efforts and investments are required in order to deliver on these potentials and reap maximum benefits for individuals and societies. IARU-ALH members are determined to contribute, in collaboration with others, to delivering on this vision.

Technology and Caregiving: Emerging Interventions and Directions for Research.

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.

Pharmacotherapy in Older Adults with Cardiovascular Disease: Report from an American College of Cardiology, American Geriatrics Society, and National Institute on Aging Workshop.

OBJECTIVES: To identify the top priority areas for research to optimize pharmacotherapy in older adults with cardiovascular disease (CVD). DESIGN: Consensus meeting. SETTING: Multidisciplinary workshop supported by the National Institute on Aging, the American College of Cardiology, and the American Geriatrics Society, February 6-7, 2017. PARTICIPANTS: Leaders in the Cardiology and Geriatrics communities, (officers in professional societies, journal editors, clinical trialists, Division chiefs), representatives from the NIA; National Heart, Lung, and Blood Institute; Food and Drug Administration; Centers for Medicare and Medicaid Services, Alliance for Academic Internal Medicine, Patient-Centered Outcomes Research Institute, Agency for Healthcare Research and Quality, pharmaceutical industry, and trainees and early career faculty with interests in geriatric cardiology. MEASUREMENTS: Summary of workshop proceedings and recommendations. RESULTS: To better align older adults' healthcare preferences with their care, research is needed to improve skills in patient engagement and communication. Similarly, to coordinate and meet the needs of older adults with multiple comorbidities encountering multiple healthcare providers and systems, systems and disciplines must be integrated. The lack of data from efficacy trials of CVD medications relevant to the majority of older adults creates uncertainty in determining the risks and benefits of many CVD therapies; thus, developing evidence-based guidelines for older adults with CVD is a top research priority. Polypharmacy and medication nonadherence lead to poor outcomes in older people, making research on appropriate prescribing and deprescribing to reduce polypharmacy and methods to improve adherence to beneficial therapies a priority. CONCLUSION: The needs and circumstances of older adults with CVD differ from those that the current medical system has been designed to meet. Optimizing pharmacotherapy in older adults will require new data from traditional and pragmatic research to determine optimal CVD therapy, reduce polypharmacy, increase adherence, and meet person-centered goals. Better integration of the multiple systems and disciplines involved in the care of older adults will be essential to implement and disseminate best practices. J Am Geriatr Soc 67:371-380, 2019.

Cooking behaviors are related to household particulate matter exposure in children with asthma in the urban East Bay Area of Northern California.

BACKGROUND: Asthma is a common childhood disease that leads to many missed days of school and parents' work. There are multiple environmental contributors to asthma symptoms and understanding the potential factors inside children's homes is crucial. METHODS: This is a dual cohort study measuring household particulate matter (PM2.5), behaviors, and factors that influence air quality and asthma symptoms in the urban homes of children (ages 6-10) with asthma; one cohort had cigarette smoke exposure in the home (n = 13) and the other did not (n = 22). Exposure data included measurements every 5 minutes for a month. RESULTS: In the entire study population, a large contributor to elevations in indoor PM2.5 above 35 µg/m3 was not using the stove hood when cooking (8.5% higher, CI 3.1-13.9%, p<0.005). Median PM values during cooking times were 0.88 µg/m3 higher than those during non-cooking times (95% CI 0.33-1.42). Mean monthly household PM2.5 level was significantly related to the presence of a cigarette smoker in the home (10.1 µg/m3 higher, 95% CI 5.2-15.1, p<0.001) when controlling for use of the stove hood and proximity to major roadway. There was a trend toward increased odds of persistent asthma with increases in average monthly PM2.5 (OR 1.1, 95% CI 0.97-1.3, p = 0.16). CONCLUSIONS: Consideration of only outdoor PM2.5 may obscure potentially modifiable risks for asthma symptoms. Specifically, this preliminary study suggests that cooking behaviors may contribute to the burden of PM2.5 in the homes of children with asthma and thus to asthma symptoms.

Efficacy of behavioral interventions for dementia caregivers.

Behavioral symptoms of Alzheimer's disease, particularly agitation, appear to be a major contributing factor to the emotional distress exhibited by family caregivers. Psychosocial interventions have been shown to reduce caregiver emotional distress, but few studies have examined the efficacy of these interventions with caregivers exposed to high levels of dementia-related behavioral symptoms. The purpose of this study is to test the efficacy of a caregiver skill building intervention in reducing emotional distress to agitated behaviors of care recipients. This study analyzed data from a subgroup of caregivers who participated in a larger randomized clinical trial (N = 295). Data from 143 caregivers of family members with baseline agitated behaviors indicate that the skill building intervention was more effective than an information and support oriented comparison condition in reducing emotional distress over an 18-month period. These findings indicate that dementia caregivers exposed to agitated behaviors can benefit from psychosocial interventions, particularly those aimed at building behavioral management skills.

The Therapeutic Environment Screening Survey for Nursing Homes (TESS-NH): an observational instrument for assessing the physical environment of institutional settings for persons with dementia.

OBJECTIVE: To develop an observational instrument that describes the ability of physical environments of institutional settings to address therapeutic goals for persons with dementia. METHODS: A National Institute on Aging workgroup identified and subsequently revised items that evaluated exit control, maintenance, cleanliness, safety, orientation/cueing, privacy, unit autonomy, outdoor access, lighting, noise, visual/tactile stimulation, space/seating, and familiarity/homelikeness. The final instrument contains 84 discrete items and one global rating. A summary scale, the Special Care Unit Environmental Quality Scale (SCUEQS), consists of 18 items. Lighting items were validated using portable light meters. Concurrent criterion validation compared SCUEQS scores with the Professional Environmental Assessment Protocol (PEAP). RESULTS: Interrater kappa statistics for 74% of items were above.60. For another 10% of items, kappas could not be calculated due to empty cells, but interrater agreement was above 80%. The SCUEQS demonstrated an interrater reliability of.93, a test--retest reliability of.88, and an internal consistency of.81--.83. Light meter ratings correlated significantly with the Therapeutic Environment Screening Survey for Nursing Homes (TESS-NH) lighting items (r =.29--.38, p =.01--.04), and the SCUEQS correlated significantly with global PEAP ratings (r =.52, p <.01). DISCUSSION: The TESS-NH efficiently assesses discrete elements of the physical environment and has strong reliability and validity. The SCUEQS provides a quantitative measure of environmental quality in institutional settings.

Caring for self while caring for others: the two-track life of coping with Alzheimer's disease.

Relationships between depressive symptoms and altered immune function have been documented in the literature; however, the links between depressive symptoms, altered immune function, and changes in physical health are less clear. Although a number of caregiver descriptive studies have examined immunological outcomes, only one intervention study with caregivers of individuals with Alzheimer's disease, known to the authors, has included immunological outcomes. The purpose of this pilot study was to assess the effectiveness of a caregiver skill-building intervention to decrease caregiver depressive symptomatology and care-receiver behavioral symptoms; and to assess the feasibility and stability of the delayed type hypersensitivity (DTH) skin test with this population. Caregiver depressive symptoms decreased, while care-receiver behaviors did not. Findings suggested that the DTH skin test could be successfully administered to caregivers of individuals with Alzheimer's disease and that this skin test had short-term stability. There were no significant relationships between caregiver depressive symptoms and immune function. Study findings suggest that nurses can play a pivotal role in intervening with family caregivers and potentially decreasing their depressive symptoms.

Aging, place, and technology: toward improving access and wellness in older populations.

OBJECTIVE: To review the range of promising technologies (e.g., smart phones, remote monitoring devices) designed to enhance aging in place; identify challenges for implementation of those technologies; and recommend ways to improve access to technologies in older populations. METHOD: A narrative review of research, practice, and policies from multiple fields, including information science, gerontology, engineering, housing and social services, health care and public health. RESULTS: Despite a wide range of emerging and current technologies, there are significant challenges for implementation, including an uneven evidence base, economic barriers, and educational and ergonomic issues that adversely affect many older adults. DISCUSSION: Recommendations for future development and adoption include improving the evidence base through field-testing of "packages" of devices in diverse populations of older adults; development of innovative funding mechanisms involving multidisciplinary teams, older adults, and caregivers; and promotion of safety and security in the use of these technologies in older populations.

Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives.

The experience of dying from Alzheimer's disease (AD) in a nursing home setting is a poorly understood phenomenon. Fifty-seven family member caregivers of persons with Alzheimer's disease, who had died as a resident in a national nursing home chain, participated in a structured telephone interview. Despite the belief that their loved one had died with dignity, 16 out of 57 (28%) family member caregivers believed that their loved one had not experienced a good death. This article reviews the definition of a good death and the six themes of a good death found in the literature: pain and symptom management; clear decision making; preparation for death; completion; contributing to others; and affirmation of the whole person. Five standards for evaluating the quality of an anticipated death are discussed in relation to the experiences of the persons with AD. Finally, recommendations for how nurse administrators and other members of the healthcare team can promote a positive death experience for a person with AD are proposed.