A visual approach to facilitating conversations about supportive care options in the context of cognitive impairment.

BACKGROUND: Persons with cognitive impairment may experience difficulties with language and cognition that interfere with their ability to communicate about health-related decision making. OBJECTIVE: We developed a visual elicitation technique to facilitate conversations about preferences concerning potential future supportive care needs and explored the utility of this technique in a qualitative interview study. METHODS: We conducted 15 online interviews with persons with mild cognitive impairment and mild to moderate dementia, using storytelling and a virtual tool designed to facilitate discussion about preferences for supportive care. Interviews were transcribed verbatim and analyzed using an inductive qualitative data analysis method. We report our findings with respect to several main themes. First, we considered participants' perspectives on supportive care. Next, we examined the utility of the tool for engaging participants in conversation through two themes: cognitive and communicative processes exhibited by participants; and dialogic interactions between the interviewer and the participant. RESULTS: With respect to participants' perspectives on supportive care, common themes included considerations relating to informal caregivers such as availability and burden, and the quality of care options such as paid caregivers. Other themes, such as the importance of making decisions as a family, considerations related to facing these challenges on one's own, and the fluid nature of decision making, also emerged. Common communicative processes included not being responsive to the question and unclear responses. Common cognitive processes included uncertainty and introspection, or self-awareness, of one's cognitive abilities. Last, we examined dialogic interactions between the participant and the interviewer to better understand engagement with the tool. The interviewer was active in using the visualization tool to facilitate the conversation, and participants engaged with the interface to varying degrees. Some participants expressed greater agency and involvement through suggesting images, elaborating on their or the interviewer's comments, and suggesting icon labels. CONCLUSION: This article presents a visual method to engage older adults with cognitive impairment in active dialogue about complex decisions. Though designed for a research setting, the diverse communication and participant-interviewer interaction patterns observed in this study suggest that the tool might be adapted for use in clinical or community settings.

The Solutions in Health Analytics for Rural Equity Across the Northwest (SHARE-NW) Dashboard for Health Equity in Rural Public Health: Usability Evaluation.

BACKGROUND: Given the dearth of resources to support rural public health practice, the solutions in health analytics for rural equity across the northwest dashboard (SHAREdash) was created to support rural county public health departments in northwestern United States with accessible and relevant data to identify and address health disparities in their jurisdictions. To ensure the development of useful dashboards, assessment of usability should occur at multiple stages throughout the system development life cycle. SHAREdash was refined via user-centered design methods, and upon completion, it is critical to evaluate the usability of SHAREdash. OBJECTIVE: This study aims to evaluate the usability of SHAREdash based on the system development lifecycle stage 3 evaluation goals of efficiency, satisfaction, and validity. METHODS: Public health professionals from rural health departments from Washington, Idaho, Oregon, and Alaska were enrolled in the usability study from January to April 2022. The web-based evaluation consisted of 2 think-aloud tasks and a semistructured qualitative interview. Think-aloud tasks assessed efficiency and effectiveness, and the interview investigated satisfaction and overall usability. Verbatim transcripts from the tasks and interviews were analyzed using directed content analysis. RESULTS: Of the 9 participants, all were female and most worked at a local health department (7/9, 78%). A mean of 10.1 (SD 1.4) clicks for task 1 (could be completed in 7 clicks) and 11.4 (SD 2.0) clicks for task 2 (could be completed in 9 clicks) were recorded. For both tasks, most participants required no prompting-89% (n=8) participants for task 1 and 67% (n=6) participants for task 2, respectively. For effectiveness, all participants were able to complete each task accurately and comprehensively. Overall, the participants were highly satisfied with the dashboard with everyone remarking on the utility of using it to support their work, particularly to compare their jurisdiction to others. Finally, half of the participants stated that the ability to share the graphs from the dashboard would be "extremely useful" for their work. The only aspect of the dashboard cited as problematic is the amount of missing data that was present, which was a constraint of the data available about rural jurisdictions. CONCLUSIONS: Think-aloud tasks showed that the SHAREdash allows users to complete tasks efficiently. Overall, participants reported being very satisfied with the dashboard and provided multiple ways they planned to use it to support their work. The main usability issue identified was the lack of available data indicating the importance of addressing the ongoing issues of missing and fragmented public health data, particularly for rural communities.

Trends in and Effectiveness of Infographics for Health Communication: A Scoping Review.

Health infographics are often used to improve knowledge or change behaviors. However, a systematic understanding of the current landscape and evidence of health infographics is lacking. The objective of this study was to explore trends in health-related infographics research and health infographic effectiveness. We conducted a scoping review of peer-reviewed publications describing health-related infographic development, using health and computer science databases. We extracted information from included articles to understand current trends in health-related infographics research and design elements that support infographic effectiveness. A total of 135 articles met our inclusion criteria. There was an increase in health infographics publications over time and definitions of infographics, when present, varied in scope and content. Out of 81 studies that evaluated the infographics' effectiveness in improving knowledge or changing attitudes or behaviors, 71 (87.7%) reported that infographics were effective. Infographics were often preferred over another medium (e.g. text). Overall, there is increasing interest in research regarding health-related infographics. While most effectiveness studies found that infographics helped improve knowledge or change behaviors, many studies lacked rigor in study design or reporting study methods. We did not find articles that focused on credibility or development of infographics tools - these are avenues for future research.

Patients with Heart Failure: Internet Use and Mobile Health Perceptions.

BACKGROUND: Heart failure is a complex clinical syndrome noted on approximately 1 in 8 death certificates in the United States. Vital to reducing complications of heart failure and preventing hospital readmissions is adherence to heart failure self-care routines. Mobile health offers promising opportunities for enhancing self-care behaviors by facilitating tracking and timely reminders. OBJECTIVE: We sought to investigate three characteristics of heart failure patients with respect to their heart failure self-care behaviors: (1) internet use to search for heart failure information; (2) familiarity with mobile health apps and devices; and (3) perceptions of using activity trackers or smartwatches to aid in their heart failure self-care. METHODS: Forty-nine heart failure patients were asked about their internet and mobile health usage. The structured interview included questions adapted from the Health Information National Trends Survey. RESULTS: Over 50% of the patients had utilized the internet to search for heart failure information in the past 12 months, experience using health-related apps, and thoughts that an activity tracker or smartwatch could help them manage heart failure. Qualitative analysis of the interviews revealed six themes: trust in their physicians, alternatives to mobile health apps, lack of need for mobile health devices, financial barriers to activity tracker and smartwatch ownership, benefits of tracking and reminders, and uncertainty of their potential due to lack of knowledge. CONCLUSIONS: Trust in their physicians was a major factor for heart failure patients who reported not searching for health information on the internet. While those who used mobile health technologies found them useful, patients who did not use them were generally unaware of or unknowledgeable about them. Considering patients' preferences for recommendations from their physicians and tendency to search for heart failure information including treatment and management options, patient-provider discussions about mobile health may improve patient knowledge and impact their usage.

Bridging Culture and Language: Encouraging Bilingual/Multicultural Individuals to Act as Information Navigators for Their Loved-Ones and Communities during the COVID-19 Pandemic.

Linguistically diverse communities face barriers to receiving appropriate health information. COVID-19 exacerbated these health-communication inequities. University of Washington researchers surveyed bilingual staff, students, and medical interpreters - desiring training to become effective communicators of COVID-19 information to their social networks and language communities. In response, the COVID-19 Information Navigator Training was developed and pre-tested with professional networks and members of the target audience. The final training comprised three interactive modules and short quizzes. Evaluation surveys measured Information Navigators' confidence in providing COVID-19 information to their social networks. Surveys included questions on the participants' language or cultural community, the perceived value of the training, and their ability to communicate COVID-19 information. Among 393 participants who enrolled in the training, 284 completed the survey. Significant differences in confidence before and after the course were found in detecting COVID misinformation in the news and social media (pre-course mean: 3.83, post-course mean: 4.63; absolute mean difference was 0.82 points higher in the post-evaluation on the 5-point likert scale, 95% CI: 0.70-0.93, p < .01). Training multicultural volunteers to disseminate information to their social networks is a promising strategy for reaching linguistically diverse communities with up-to-date information during health emergencies.

Supportive care decision-making processes of persons with dementia and their caregivers.

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.

Rural Public Health Data Challenges During the COVID-19 Pandemic: The Case for Building Better Systems Ahead of a Public Health Crisis.

CONTEXT: Rural public health personnel serve communities that have been particularly susceptible to COVID-19 and yet faced the pandemic with far less well-resourced capacity than their urban counterparts. A critical aspect of addressing local health inequities is access to high-quality population data and the capacity to effectively use data to support decision making. However, much of the data required to investigate inequities are not readily available to rural local health departments and the tools and training to analyze data are often lacking. PROGRAM: The purpose of our effort was to explore rural data challenges related to COVID-19 and provide recommendations for improving rural data access and capacity ahead of future crises. IMPLEMENTATION: We gathered qualitative data in 2 phases, more than 8 months apart, from rural public health practice personnel. Initial data were gathered in October-November 2020 regarding rural public health data needs during the COVID-19 pandemic and then to later identify whether the same findings held true in July 2021 or whether access to and capacity to use data to address the pandemic and related inequities improved as the pandemic progressed. EVALUATION: In our 4-state exploration focused on access and use of data among rural public health systems to promote health equity in the Northwest United States, we found tremendous and ongoing unmet data needs, challenges with communicating data, and a lack of capacity to meet this public health crisis. DISCUSSION: Recommendations for addressing these challenges include increasing dedicated resources specifically to rural public health systems, improving data access and infrastructure, and providing dedicated data-related workforce development.

Using Informatics to Engage Vulnerable Populations in Research: Lessons Learned from the COVID-19 Pandemic.

Social distancing and "lockdown" measures introduced by the COVID-19 pandemic created barriers to recruitment and engagement of community members in research activities. Information technology tools were quickly introduced to allow for virtual participation of stakeholders in research. Vulnerable populations, namely communities with limited access to resources or at a higher risk to experience bias or discrimination, were less likely to engage in such virtual research initiatives. Informatics tools have the potential to support these populations, but existing disparities require a careful consideration of engagement strategies. We discuss three case studies of ongoing research projects targeting vulnerable populations and highlight the role of informatics in facilitating engagement. Target populations include family caregivers of hospice patients, low-income older adults and patients with dementia and their families. We describe strategies to overcome unique challenges introduced by the pandemic, and ways to build a more resilient future.

The use of visual methods to support communication with older adults with cognitive impairment: A scoping review.

Older adults with cognitive impairment often face difficulties with comprehension and communication, which can impact other cognitive processes such as decision-making. This scoping review investigates how visual methods can support older adults with cognitive impairment. The review involved querying four databases. From these databases, eleven articles fit inclusion criteria. This paper examines the purposes, use contexts, types, and effectiveness of the visual methods described in each study. The two major use contexts were elicitation of thoughts, feelings, and preferences in everyday life and health/healthcare related uses. Studies that used visual methods for eliciting preferences generally employed static visualizations. Health-related contexts employed more complex and interactive visualizations. Three studies used visual tools to support older adults in understanding; six, communication; and three, decision-making. None addressed all three outcomes of interest. This study provides recommendations and future directions for visual communication research with older adults with cognitive impairment.

Supporting rural public health practice to address local-level social determinants of health across Northwest states: Development of an interactive visualization dashboard.

BACKGROUND: Rural local health departments (LHDs) lack adequate capacity and funding to effectively make data-driven decisions to support their communities that face greater health disparities compared to urban counterparts. The need, therefore, exists for informatics solutions to support rural LHDs. PURPOSE: We describe the user-centered design (UCD) of SHARE-NW: Solutions in Health Analytics for Rural Equity across the Northwest, a website (sharenw.nwcphp.org) with data visualization dashboards for rural LHD practitioners in Alaska, Idaho, Oregon, and Washington to help them identify health disparities in their jurisdictions. METHODS: In this UCD study guided by Munzner's Nested Model for Visualization Design and Validation, we (1) completed a needs assessment, (2) created and evaluated mockups, and (3) conducted usability testing of a functional alpha testing website. Potential end-users (rural LHD practitioners) and Equity Advisory Committee members (public health experts from state, rural local, and tribal public health agencies) across our four-state catchment area were engaged throughout the website development and testing. We adapted traditional in-person UCD methods to be remote to reach participants across a large geographic area and in rural/frontier areas of Alaska, Idaho, Oregon, and Washington. RESULTS: We recruited participants from all four states to engage in each stage of the project. Needs assessment findings informed the mockup development, and findings from the mockup evaluations informed the development of the functional website. Usability testing of the website overall was positive, with priority usability issues identified. CONCLUSIONS: By applying Munzner's Nested Model and UCD, we could purposefully and intentionally design evidence-based solutions, specifically for rural LHD practitioners. Adaptations of traditional UCD methods were successful and allowed us to reach end-users across a large geographic area. Future work on SHARE-NW will involve the evaluation of the website. We provide insights on our lessons learned to support future public health informatics solution development.

Challenges and opportunities in conducting research with older adults with dementia during COVID-19 and beyond.

The coronavirus disease 19 (COVID-19) pandemic has created significant and new challenges for the conduct of clinical research involving older adults with Alzheimer's disease and related dementias (ADRD). It has also stimulated positive adaptations in methods for engaging older adults with ADRD in research, particularly through the increased availability of virtual platforms. In this paper, we describe how we adapted standard in-person participant recruitment and qualitative data collection methods for virtual use in a study of decision-making experiences in older adults with ADRD. We describe key considerations for the use of technology and virtual platforms and discuss our experience with using recommended strategies to recruit a diverse sample of older adults. We highlight the need for research funding that supports the community-based organizations on which improving equity in ADRD research participation often depends.

Personal health information management among healthy older adults: Varying needs and approaches.

OBJECTIVE: With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. MATERIALS AND METHODS: Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. RESULTS: We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. DISCUSSION: Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. CONCLUSIONS: PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

Older adults' personal health information management: The role and perspective of various healthcare providers.

The management of personal health information (PHI) by older adults (OAs) takes place within a socio-technical context and requires the support of various stakeholders, including healthcare providers. This study investigates provider roles in supporting OA personal health information management (PHIM), barriers they face, and related design implications for health information technology (HIT). We interviewed 27 providers serving OAs in Seattle, WA. Providers support OA PHIM through medication management, interpreting HI, and providing resources. Barriers to OA PHIM described by providers include (1) challenges with communication between OAs, providers, and caregivers, (2) limited time and resources, and (3) limitations of tools such as secure messaging. Considering these barriers, provider roles, and the socio-technical context for HIT implementation, we recommend the design of HIT that facilitates communication across multiple provider types, integrates caregivers and patient-generated data, supports understanding of OA home environments, and offers credible health resources designed for OAs.

Older Adult Health-Related Support Networks: Implications for the Design of Digital Communication Tools.

BACKGROUND AND OBJECTIVES: Digital communication tools facilitate the provision of health-related social support to older adults. However, little is known about what design features make such tools most useful and feasible. The purpose of this study was to describe health-related social support networks of older adults and outline recommendations for the design of tools that facilitate the giving and receiving of support. RESEARCH DESIGN AND METHODS: We collected data through validated instruments and semistructured qualitative interviews with 88 older adults. We calculated descriptive statistics for the quantitative data and analyzed qualitative data using directed content analysis. RESULTS: Health-related support networks described by our sample of generally healthy older adults varied in size from 0 to 10 members. Some networks did not include any family members, and others did not include any friends. Seventy-four percent of network members lived in the same state as the older adult participant, but only 15% of them lived with the participant. Emotional support was the main type of health-related support provided, followed by instrumental, informational, and appraisal support. DISCUSSION AND IMPLICATIONS: Health-related support networks of older adults are varied and complex. Our results suggest that digital communication tools to promote and leverage support from network members should facilitate the involvement of friends and family regardless of their physical location, allow for the transparent allocation of concrete tasks to prevent overburdening any one network member, and facilitate sharing of personal health information with family and friends while ensuring privacy and autonomy.

Best Practices for Designing Discrete Choice Experiments and the Use for Older Adults with Cognitive Impairment.

OBJECTIVE: the aim of this scoping review is to 1) identify guidelines, frameworks, issues, and recommendations regarding the development of a discrete choice experiment (DCE), 2) look at potential design considerations regarding the development of a DCE for older adults with dementia, and 3) summarize knowledge about the current inclusion of and experiences with older adults with cognitive impairment in DCE studies. METHODS: Two literature searches divided into two topics were performed in PubMed, CINAHL, and PsycINFO. RESULTS: Topic 1 found 19 articles regarding frameworks, guidelines and design considerations for DCEs in healthcare. Topic 2 found eight articles regarding the effect of cognitive impairment on DCE results and/or discussing the inclusion of cognitive impaired older adults in these DCE studies. CONCLUSION: There is minimal literature available regarding the effect of cognitive impairment on DCE results. In future studies we will explore if DCEs can be used to involve older adults with dementia in decisions regarding transitions in care.

Why Should I Trust You? Supporting the Sharing of Health Data in the Interprofessional Space of Child Development.

Many stakeholders can be involved in supporting a child's development, including parents, pediatricians, and educators. These stakeholders struggle to collaborate, and experts suggest that health information technology could improve their communication. Trust, based on perceptions of competence, benevolence, and integrity is fundamental to supporting information sharing, so information technologies should address trust between stakeholders. We engaged 75 parents and 60 healthcare workers with two surveys to explore this topic. We first elicited the types of information parents and healthcare workers use to form perceptions of competence, benevolence, and integrity. We then designed and tested user profile prototypes listing the elicited information to see if it builds trust in previously unknown professionals. We discovered that providing information related to personal characteristics, relationships, professional experience, and workplace practices can support trust and the sharing of information. This work has implications for designing informative electronic user interfaces to support interprofessional trust.

Recruiting older adult participants through crowdsourcing platforms: Mechanical Turk versus Prolific Academic.

BACKGROUND: Recruiting older adults (OA) into research is challenging. OBJECTIVE: To assess the feasibility of using two crowdsourcing platforms, Amazon's Mechanical Turk (MTurk) and Prolific Academic (ProA), as efficient and low-cost venues for recruiting survey participants aged 65 and older. METHODS: We developed an online survey to investigate and compare the demographics, technology use, and motivations for research participation of OA on MTurk and ProA. Qualitative responses, response time, word count, and recruitment costs were analyzed. RESULTS: We recruited 97 OA survey participants on both MTurk and ProA. Participants were similar in terms ofdemographics, technology usage, and motivations for participation (topic interest and payment). CONCLUSION: Both crowdsourcing platforms are useful for rapid and low-cost recruitment of OA. The OA recruitment process was more efficient with ProA. Crowdsourcing platforms are potential sources of OA research participants; however, the pool is limited to generally healthy, technologically active, and well-educated older adults.

Home Care Nurses' Perspectives Regarding Health Information Management Among Older Adults.

Aging is associated with comorbidities and increased utilization of healthcare services, which results in a large amount of personal health information (PHI) to manage. Older adults often have difficulty managing this increased load of health information. Although many home healthcare nurses (HCNs) provide assistance to older adults after discharge from medical facilities, little is known about HCNs' experiences with older adults regarding the management and transfer of PHI in their homes. The purpose of this qualitative study was to 1) determine how HCNs obtain and provide health information, 2) describe the perspective of HCNs regarding older adult PHI, and 3) identify the potential role of technology in older adult health information transfer. We conducted and analyzed semistructured phone interviews with 17 HCNs from two home healthcare agencies. Five thematic areas emerged from interviews with HCNs: 1) common practices of obtaining health information; 2) barriers to obtaining health information; 3) ideal ways to obtain and provide health information; 4) use of patient portals; and 5) HCNs' use of technology for health information exchange. Most HCNs reported that it would be difficult for older adult patients to update their PHI without assistance, but HCNs lack the time and resources to assist older adults in PHI management activities.

Randomised evaluation of active control of temperature versus ordinary temperature management (REACTOR) trial.

PURPOSE: It is unknown whether protocols targeting systematic prevention and treatment of fever achieve lower mean body temperature than usual care in intensive care unit (ICU) patients. The objective of the Randomised Evaluation of Active Control of temperature vs. ORdinary temperature management trial was to confirm the feasibility of such a protocol with a view to conducting a larger trial. METHODS: We randomly assigned 184 adults without acute brain pathologies who had a fever in the previous 12 h, and were expected to be ventilated beyond the calendar day after recruitment, to systematic prevention and treatment of fever or usual care. The primary outcome was mean body temperature in the ICU within 7 days of randomisation. Secondary outcomes included in-hospital mortality, ICU-free days and survival time censored at hospital discharge. RESULTS: Compared with usual temperature management, active management significantly reduced mean temperature. In both groups, fever generally abated within 72 h. The mean temperature difference between groups was greatest in the first 48 h, when it was generally in the order of 0.5 °C. Overall, 23 of 89 patients assigned to active management (25.8%) and 23 of 89 patients assigned to usual management (25.8%) died in hospital (odds ratio 1.0, 95% CI 0.51-1.96, P = 1.0). There were no statistically significant differences between groups in ICU-free days or survival to day 90. CONCLUSIONS: Active temperature management reduced body temperature compared with usual care; however, fever abated rapidly, even in patients assigned to usual care, and the magnitude of temperature separation was small. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry Number, ACTRN12616001285448.