Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

Smart Speaker and ICT Use in Relationship With Social Connectedness During the Pandemic: Loneliness and Social Isolation Found in Older Adults in Low-Income Housing.

BACKGROUND AND OBJECTIVES: Social well-being of older adults living in low-income housing was disproportionately affected by the coronavirus disease 2019 pandemic. We explored low-income residents' experiences of social isolation and loneliness and strategies to remain socially connected during the pandemic. RESEARCH DESIGN AND METHODS: As part of a larger, 3-phase user-centered design study, we conducted a qualitative study using focus groups to gain insights into social isolation experiences and the role of information and communication technologies (ICTs), including smart speakers, in social connectedness (N = 25, 76% African American). We also collected survey data to describe social isolation, loneliness, and current ICT use in the sample. Participants included both smart speaker users and nonusers. RESULTS: Experiences of social isolation and loneliness varied by participants' sociodemographic characteristics and previous experiences with smart speakers. Qualitative analysis showed participants demonstrated coping strategies developed during the pandemic to adapt to new norms of connecting with others, including technology-enabled social interactions. Participants expressed a strong desire to build community together in their facilities and highlighted the potential role of smart speakers in making meaningful social connections, encompassing safety checks to have a means for emergencies, and providing a virtual companion. Access, digital literacy, training, security, and privacy issues were discussed as factors affecting their adoption of new ICT for enhanced social connectedness. DISCUSSION AND IMPLICATIONS: This study highlights the importance of understanding the unique social isolation experience, demographics, and social determinants of health of low-income residents to develop ICT-based interventions for social connectedness.

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

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.

The ethics of sensor technology use in clinical research.

Sensor-based technologies are used today in clinical practice, research, and for monitoring people's health in homes across the United States. Although the increasing growth and complexity of such technologies promises both direct and indirect benefits, significant ethical concerns are raised. We discuss several of these concerns, particularly those that arise in clinical research and outline ethical considerations that pertain to the concept of informed consent, participants' understanding of risks and benefits and the need for tailored and accessible information that will enable participants to fully understand research implications. Balancing the benefits with the potential risks of advanced information technology will require ethically astute researchers who can address the challenges that might arise while advancing knowledge with innovation that can improve the lives of patients and families.

The Experience of Home Care Providers and Beneficiaries With Enhanced Training Requirements in Washington State.

Objective: Our objective was to understand the perceived impact of Washington State's upgraded training and certification requirements of long-term care workers providing personal care services from the perspectives of consumers and home care aides. Methods: We applied conventional qualitative content analysis to semi-structured interviews with 17 consumers and 10 certified home care aides. Results: We found that consumers in this study put a high premium on directing many aspects of their personal care services. We also found that while home care aides supported what consumers desired for their own care, some were unsure how to reconcile providing individualized services with the State's standardized, competency-based training and certification program. Discussion: State-based efforts, such as the one in Washington State, serve as an important starting point for building a broader effort toward the identification of competencies and associated training standards for the home care workforce.

Monitoring for change: the role of family and friends in helping older adults manage personal health information.

Objective: Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods: We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results: FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions: FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.

IT-based wellness tools for older adults: Design concepts and feedback.

OBJECTIVE: To explore older adults' preferences regarding e-health applications through use of generated concepts that inform wellness tool design. METHODS: The 6-8-5 method and affinity mapping were used to create e-health design ideas that were translated into storyboards and scenarios. Focus groups were conducted to obtain feedback on the prototypes and included participant sketching. A qualitative analysis of the focus groups for emerging themes was conducted, and sketches were analyzed. RESULTS: Forty-three older adults participated in six focus group sessions. The majority of participants found the wellness tools useful. Preferences included features that supported participants in areas of unmet needs, such as ability to find reliable health information, cognitive training, or maintaining social ties. Participants favored features such as use of voice navigation, but were concerned over cost and the need for technology skills and access. Sketches reinforced these wants, including portability, convenience, and simplicity. CONCLUSIONS: Several factors were found to increase the desirability of such devices including convenient access to their health and health information, a simple, accessible interface, and support for memory issues. Researchers and designers should incorporate the feedback of older adults regarding wellness tools, so that future designs meet the needs of older adults.

Differential effects of patient symptom subtypes on informal hospice caregiver depression.

ABSTRACTObjective:Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not. METHOD: Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale-Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire-9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation. RESULTS: Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample. SIGNIFICANCE OF RESULTS: Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.

Self-report pain assessment tools for cognitively intact older adults: Integrative review.

BACKGROUND: Pain is common in older adults, but it is often underreported or undertreated partly because many consider pain to be a normal consequence of ageing. Among the plethora of available self-report pain assessment tools, there is no synthetised evidence which tools are indicated for use among cognitively intact older adults. PURPOSE OF THE STUDY: To understand documented self-report pain assessment tools that have been used among cognitively intact older adults, and to describe their characteristics including overall performance as well as studies demonstrating their use. METHODS: A systematic search of the indexed databases PubMed, PsycINFO and Cumulative Index to Nursing and Allied Health Literature (CINAHL Plus) was conducted to identify documented self-report pain assessment tools through peer-reviewed papers, including citations from January 1990 to December 2015. Thirty-five percentage of abstracts were independently evaluated by two raters according to specific criteria. RESULTS: Among identified tools, the Iowa Pain Thermometer, the 6-point Verbal Descriptor Scale, the Numeric Rating Scale, the short form Brief Pain Inventory (BPI) and the Geriatric Pain Measure (GPM) may be suitable tools for self-reported pain by cognitively intact older adults based on the statement of the literature. Only two self-report tools (the GPM and the Geriatric Painful Events Inventory) were designed specifically for older adults. CONCLUSIONS: More studies are needed to evaluate pain measures' psychometric performance across different settings, racial/ethnic groups and disease categories. Since 80% of older adults have at least one chronic disease, multidimensional tools such as the GPM may need to be used more often for accurate self-report of pain. IMPLICATIONS FOR PRACTICE: Examining the psychometric properties of comprehensive self-report pain assessment tools informs recommendations for the selection of tools to be used in clinical practice.

Lack of Diversity in Personal Health Record Evaluations with Older Adult Participants: A Systematic Review of Literature.

BACKGROUND: Older adults are not adopting personal health records (PHRs) at the same rates as other adult populations. Disparities in adoption rates are also reported in older adult subgroups. The variability in adoption may be because PHRs are not designed to meet older adult users. OBJECTIVE: We analyzed PHR evaluation studies to examine the characteristics and perspectives of older adult study participants to identify their self-reported needs. METHOD: We searched Medline, CINAHL, PsycINFO, and Embase for PHR evaluation studies that involved older adult participants. RESULTS: 1017 abstracts were identified, and 179 publications went through full text review. 10 publications met inclusion criteria. These publications described studies conducted in 3 countries, and evaluated 7 PHRs. Homogeneity was found in the study populations and participant opinions of the systems. DISCUSSION: Many PHR evaluations do not include diverse older adult participants. This may lead to consistency in outcomes, but it also may create gaps in identifying user needs. Additional studies, specifically targeting diverse older adult participants, are needed to gain a more comprehensive understanding of the opinions of older adults on PHRs and how these systems could benefit older adult healthcare consumers. CONCLUSION: The body of research shows that older adults are highly satisfied using PHRs. These outcomes may be generalizable because most PHR evaluation studies do not include diverse older adult participants. This lack of participant diversity may be contributing to the disparities observed in PHR adoption rates.

A Qualitative Analysis of Information Sharing in Hospice Interdisciplinary Group Meetings.

BACKGROUND: In the United States, hospice agencies are required to convene interdisciplinary group (IDG) meetings no less frequently than every 15 days to review patients' care plans. Challenges associated with information sharing during these meetings can impede efficiency and frustrate attendees. OBJECTIVES: We sought to examine information sharing in the context of hospice IDG meetings as a first step toward developing an informatics tool to support interdisciplinary collaboration in this setting. Specifically, we wanted to better understand the purpose of information sharing in IDG meetings and determine the type(s) of information required to fulfill that purpose. Methods, Setting, and Participants: In this qualitative descriptive study, we analyzed video recordings of care plan discussions (n = 57) in hospice IDG meetings and individual interviews of hospice providers (n = 24). RESULTS: Data indicated that sharing physical, psychosocial, and spiritual information is intended to optimize hospice teams' ability to deliver whole-person care that is aligned with patient and family goals and that satisfies regulatory requirements. CONCLUSION: Information sharing is a key function of hospice teams in IDG meetings. Informatics tools may optimize IDG meeting efficiency by succinctly presenting well-organized and required information that is relevant to all team members. Such tools should highlight patient and family goals and ensure that teams are able to satisfy regulatory requirements.

Examining Korean and Korean American older adults' perceived acceptability of home-based monitoring technologies in the context of culture.

OBJECTIVE: Despite the increasing use of home-based monitoring technologies by older adults, few studies have examined older adults' acceptance of these technologies, especially among people from diverse cultural groups. The purpose of this study was to explore Korean and Korean American older adults' attitudes toward and perceptions of home-based monitoring technologies in a cultural context. METHODS: A qualitative analysis of focus groups and individual interviews using inductive coding methods and a constant comparative approach for emerging themes was conducted. RESULTS: Several cultural factors that determine the acceptability of home-based monitoring technologies were identified. Most notably, the necessity of living alone due to loosened filial tradition and immigration was a main motivator for adopting these technologies for both Korean and Korean Americans. The level of satisfaction with the health care system or therapeutic interaction affected participants' perceived need for technologies. Compared with the Korean American group, Korean older adults regarded the government's role as more important in increasing adoption and use of new technologies. CONCLUSIONS: Contextual factors need to be considered when explaining perceptions of home-based monitoring technologies among older adults from various ethnic groups and developing diffusion strategies according to end users' attitudes, experiences, and cultural backgrounds.

Older Adults' Perceptions of Fall Detection Devices.

A third of adults over the age of 65 are estimated to fall at least once a year. Perhaps as dangerous as the fall itself is the time spent after a fall if the person is unable to move. Although there are many devices available to detect when a person has fallen, little is known about the opinions of older adults regarding these fall detection devices (FDDs). We conducted five focus groups with 27 older adults. Transcripts from sessions were coded to generate themes that captured participants' perceptions. Themes were identified that related to two topics of interest: (a) personal influences on the participants' desire to have a FDD, including perceived need, participant values, and cost, and (b) participant recommendations regarding specific features and functionalities of these devices such as automation, wearable versus non-wearable devices, and device customization. Together, these themes suggest ways in which FDDs may be improved so that they are suitable for their intended population.

The Prevalence and Risks for Depression and Anxiety in Hospice Caregivers.

BACKGROUND: Depression and anxiety are common concerns for hospice caregivers. OBJECTIVE: This study looked at the prevalence and variables associated with hospice caregiver depression and anxiety, as well as the relationship between the two conditions. SUBJECTS: We did a secondary analysis of preexisting data. MEASUREMENTS: Measures included the PHQ-9 and GAD-7. RESULTS: Nearly one-quarter of caregivers were moderately to severely depressed, and nearly one-third reported moderate to severe symptoms of anxiety. Risk factors for both depression and anxiety included younger age and poorer self-rated global health. Depression-specific risk factors included being married and caring for a patient with a diagnosis other than cancer. The sole anxiety-specific risk factor identified was geographic location, as caregivers living in the Southeast were found to have greater anxiety than those in the Midwest. CONCLUSION: Hospice providers' recognition of family caregivers as both coproviders and corecipients of care underscores the need to more fully assess and respond to depression and anxiety among caregivers.

Evaluation of a multifunctional technology system in a memory care unit: Opportunities for innovation in dementia care.

INTRODUCTION: Stimulating recreational and leisure activities (RLAs) are essential to physical and mental well-being; however, people living in memory care units (MCUs) may lack access to them. Technology has the potential to facilitate and enrich activity engagement in this context. OBJECTIVES: In this 6-month study, we evaluated a commercially available system designed to encourage the engagement of people with dementia in activities and social interactions, using a mixed-methods approach in a MCU. METHODS: Quantitative measures included those to evaluate cognition, depression, quality of life, and resource utilization. We qualitatively evaluated the system using semi-structured interviews with family members and staff. Five residents with dementia, four family members, and seven staff were included in the 6-month study. RESULTS: Staff and family members reported benefits for residents such as enjoyment, interactions and connections with others, and mental stimulation. Findings also highlight challenges such as technical and ethical concerns. Factors that influence system use and integration are also discussed. CONCLUSION: It was feasible to introduce a system designed for recreation and engagement in a MCU, and staff, family members, and residents experienced benefits. However, barriers existed in the introduction and use of the system.

Family Members' Experience With Hospice in Nursing Homes.

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents' family members has been limited. The purpose of this qualitative investigation was to explore family members' experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members' experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated.

Use of Patient Portals: Personal Health Information Management in Older Adults.

The personal health information management (PHIM) of older adults is poorly understood. We describe initial results from the SOARING (Studying Older Adults & Researching Information Needs and Goals) study at the University of Washington, a participatory design investigation of PHIM in older adults. We conducted in-depth interviews with older adults (n=71) living in a variety of residential settings. A surprising 21% of participants reported using patient portals. Another 17% of participants reported prior use or anticipated use of portals in the future. We identified preferences and needs as well as barriers and facilitators to portal use. Our findings indicate that patient portals designed to target the specific needs for older adults can suport PHIM. We offer recommendations for expanded research.