Caregiving intensity and duration, cardiovascular disease, and race/ethnicity in family caregivers of persons with dementia.

We investigated if caregiving intensity and duration affected cardiovascular disease (CVD) risks and diagnosis and whether the relationship differed by race and ethnicity in family caregivers (FCGs) of persons with dementia. We conducted a secondary analysis of the 2015-2020 CDC Behavioral Risk Factor Surveillance System data using a logistic regression analysis. A total of 6132 dementia FCGs were included. We found that the more time FCGs spent providing care per week (intensity) or over time (duration), the more likely they reported CVD risks and diagnosis. However, the associations between caregiving intensity and CVD risks and diagnosis did not differ by race and ethnicity, nor did the associations between caregiving duration and the outcomes. These findings suggest future studies should be conducted to develop preventive strategies for FCGs' cardiovascular health. Further work is needed to identify the impact of race and ethnicity on the relationship between caregiving conditions and CVD with larger samples of racial and ethnic minorities.

Heart Failure Family Caregivers' Perspectives of Physical Activity Engagement: A Qualitative Study.

Research on caregiver burden and related psychological distress has been widely studied. However, little research has focused on perspectives and experiences of older family caregivers of persons with heart failure on engaging in physical exercise to improve their health and wellness. We investigated barriers and facilitators influencing physical activity engagement for older family caregivers of persons with heart failure through a qualitative descriptive study design utilizing participant interviews. The social cognitive theory framework guided the thematic analysis. Identified themes and subthemes that emerged were centered around the framework's interrelated personal, environmental, and behavioral factors. Self-efficacy emerged as a central construct facilitating engagement in physical activity. The older family caregivers embraced technology for physical activity interventions more readily since the COVID-19 pandemic encouraged increased technology use. The age-related and caregiving barriers to physical activity found in this study highlight considerations for an older family caregiver and guide interventions for future family caregivers' engagement.

Perceptions and Attitudes toward a Proposed Digital Health Physical Activity Program among Older Family Caregivers of Persons with Heart Failure: A Qualitative Study.

Tailored physical activity (PA) programs using digital health technologies in the home can promote family caregivers' (FCGs) physical function and psychological wellbeing. However, there is a gap in research for digital health PA interventions targeting older FCGs of persons with HF (HF-FCGs). The burden of caregiving for persons with HF may displace the FCG's self-care, including PA. Therefore, we examined older HF-FCGs' perceptions and attitudes toward three technology components (video-conferencing, fitness tracker, text messaging) that would be most useful in delivering a digital health PA program. Interviews were conducted with 13 HF-FCGs (≥65 years old) between January and April 2021. Directed content analysis was used and the analysis was guided by the adapted unified theory of acceptance and use of technology (UTAUT) model. In addition to HF-FCGs' perceptions and attitudes toward each technology component in each construct of the adapted UTAUT model (ease of use, usefulness, facilitating conditions), three additional factors were associated with intention to use technology. These were: (1) HF patients' positive experience, (2) digital skills, and (3) quality of internet connectivity. The findings provide digital health requirements for design and modification of a technology-supported PA program that engages older FCGs who care for persons with HF.

Assessing Racial and Ethnic Differences in Cardiovascular Disease in U.S. Family Caregivers of Persons With Dementia: Analysis of Data from the 2015-2020 Behavioral Risk Factor Surveillance System.

The current study examined racial and ethnic differences in psychological, behavioral, and metabolic risk factors for cardiovascular disease (CVD) and CVD conditions among family caregivers (FCGs) of persons with dementia. We used the 2015-2020 Behavioral Risk Factor Surveillance System data. The sample included a total of 6,132 FCGs of persons with dementia. Compared to non-Hispanic White FCGs, non-Hispanic Black and non-Hispanic Asian FCGs were less likely to have depression. The Other racial/ethnic FCG group was more likely to currently smoke. Non-Hispanic Black FCGs were less likely to have exercised, more likely to be obese, and more likely to have been diagnosed with diabetes. No differences in CVD conditions (e.g., angina/coronary heart disease, stroke, myocardial infarction) were detected between racial/ethnic minority FCGs and non-Hispanic White FCGs. Future studies should investigate relationships between racial/ethnic minority-specific caregiving and CVD by including a larger, racially and ethnically diverse population of FCGs. [Research in Gerontological Nursing, 16(5), 241-249.].

Caregiving experiences of older family caregivers of persons with heart failure: A mixed methods study.

Older family caregivers of persons with heart failure (HF-FCGs) are an understudied and vulnerable population, who are at heightened risk for age-related physical and cognitive declines. We explored caregiving experiences of older HF-FCGs and examined levels of their caregiver burden, psychological distress, caregiving self-efficacy and quality of life (QoL) using descriptive mixed methods. We conducted telephone-based surveys and semi-structured interviews (N=13). Low levels of caregiver burden, psychological distress, and high levels of caregiving self-efficacy and QoL were reported. Through qualitative interviews, three qualitative themes emerged: (1) Impact of Being a Caregiver, (2) Managing Caregiver Distress, and (3) Embracing the Caregiver Role. Psychological distress was the most frequently reported. Physical, psychological, and social distress experienced by older HF-FCGs might be offset by their coping strategies and willingness to accept their caregiver role. FCG-centered support programs that help older HF-FCGs develop and apply their own coping strategies should be considered.

Experiences of Older Family Care Partners of Persons With Heart Failure 1 Year After the Onset of the COVID-19 Pandemic: A Qualitative Study.

The coronavirus disease 2019 (COVID-19) pandemic has negatively affected the health and well-being of family care partners of older adults with heart failure (HF-FCPs). The purpose of the current study was to examine the caregiving experiences and coping strategies of older HF-FCPs during the ongoing pandemic. Qualitative telephone interviews were conducted with 13 HF-FCPs (aged ≥65 years) from January to April 2021. Three themes emerged: (1) Impact on Physical, Mental, and Social Health; (2) Limitations of Using Health Care Services; and (3) Coping Strategies. During the pandemic, HF-FCPs had increased caregiving burden due to managing their own age-related health and providing care to their family member with heart failure. After 1 year of COVID-19, they adjusted by increasing use of telecommunication platforms and following prevention and protection strategies. During the ongoing pandemic, emotional and social support, respite care, and digital health support for older HF-FCPs would be beneficial for improving their physical, mental, and social health. [Journal of Gerontological Nursing, 48(10), 47-52.].

Use of Digital Health Technology for Seeking Health Information Among Older Family Caregivers.

There is little research on the relationship between digital health technology use and health services, self-efficacy, health status, and health information seeking behavior among older family caregivers. We conducted a secondary analysis of the US Health Information National Data and found that older family caregivers with a regular healthcare provider are more likely to use digital health technology, which increases their confidence in obtaining health information (ß=0.075, z=2.015, p<0.044).

Effects of Physical Activity Programs on Health Outcomes of Family Caregivers of Older Adults with Chronic Diseases: A Systematic Review.

This systematic review was conducted to analyze and capture the most recent trends in physical activity interventions for family caregivers of older adults with chronic disease as found in randomized clinical trials over the last 10 years (2010-2020). We used PubMed, CINAHL, Embase, PsycInfo, and the Cochrane Library. We synthesized participants' demographics, physical activity interventions and family caregivers' health outcomes. The Cochrane Collaboration Risk of Bias Tool was used to assess risk of bias of the included studies. Sixteen studies were included and most studies (n = 11) had a moderate risk of bias. Physical activity programs with mixed modes (e.g., aerobic and resistance exercise), mixed delivery methods (e.g., in-person and telephone) and mixed settings (e.g., supervised gym-based sessions and unsupervised home-based sessions) were used most frequently. Physical activity interventions significantly improved psychological health but had inconsistent effects on physical health. This review provides current trends and research findings that suggest types of physical activity interventions and components that improve family caregivers' health and wellness.

Eliciting the educational needs and priorities of home care workers on end-of-life care for patients with heart failure using nominal group technique.

BACKGROUND: Home care workers, as paid caregivers, assist with many aspects of home-based heart failure care. However, most home care workers do not receive systematic training on end-of-life care for heart failure patients. AIM: To elicit the educational needs and priorities of home care workers caring for community- dwelling adults with heart failure at the end-of-life. DESIGN: Nominal group technique involving a semi-quantitative structured group process and point rating system was used to designate the importance of priorities elicited from home care workers. Individual responses to the question, "If you have ever cared for a heart failure patient who was dying (or receiving end-of-life care on hospice), what are some of the challenges you faced?", were aggregated into categories using directed content analysis methods. SETTING/PARTICIPANTS: Forty-one home care workers were recruited from a non-profit training and education organization in New York City. RESULTS: Individual responses to the question were aggregated into five categories: (1) how to cope and grieve; (2) assisting patients with behavior changes, (3) supporting patients to improve their quality of life, (4) assisting patients with physical symptom management, and (5) symptom recognition and assessment. CONCLUSIONS: Our findings confirm the need for the formal development and evaluation of an educational program for home care workers to improve the care of heart failure patients at the end-of-life. There is also a need for research on integrating home care workers into the interprofessional healthcare team to support optimal health outcomes for patients with heart failure.

On Board: Interdisciplinary Team Member Perspectives of How Patients With Heart Failure and Their Families Navigate Hospice Care.

Hospice agencies serve an expanding population of patients with varying disease conditions and sociodemographic characteristics. Patients with heart failure represent a growing share of hospice deaths in the United States. However, limited research has explored the perspectives of hospice interdisciplinary team members regarding how patients with heart failure and their families navigate hospice care. We sought to address this research gap by conducting qualitative interviews with hospice interdisciplinary team members at a large, not-for-profit hospice agency in New York City (N = 32). Five overarching themes from these interviews were identified regarding components that members of the hospice interdisciplinary team perceived as helping patients with heart failure and their families navigate hospice care. These themes included (1) "looking out: caregiving support in hospice care," (2) "what it really means: patient knowledge and understanding of hospice," (3) "on board: acceptance of death and alignment with hospice goals," (4) "on the same page: communication with the hospice team," and (5) "like a good student: symptom management and risk reduction practices." Interdisciplinary team members delineated several components that influence how patients with heart failure and their families navigate hospice services and communicate with care providers. Hospice agencies should consider policies for augmenting services among patients with heart failure to improve their understanding of hospice, supplement available caregiving supports for patients without them, and remove communication barriers.

The Development and Implementation of a Cardiac Home Hospice Program: Results of a RE-AIM Analysis.

BACKGROUND: Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs. AIM: This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs. DESIGN: We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework. SETTINGS/PARTICIPANTS: We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source. RESULTS: Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years. CONCLUSION: The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.

Building trust and facilitating goals of care conversations: A qualitative study in people with heart failure receiving home hospice care.

BACKGROUND: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers. AIM: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice. DESIGN: A qualitative descriptive study design was used with semi-structured interviews. SETTING/PARTICIPANTS: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019. RESULTS: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations. CONCLUSION: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.

Factors Related to Biological Sex Differences in Engagement with Healthcare Providers in Persons Living with HIV.

Little is known about how engagement with healthcare providers mediates the relationship between psychosocial factors (anxiety, depression, stigma) and medication adherence among persons living with HIV (PLWH). Moreover, little research has investigated potential biological sex differences in this relationship. We conducted a secondary analysis of data collected from four projects (N = 281) focused on improving health outcomes in PLWH. Males displayed (a) negative association between depression and engagement with healthcare providers (ß = - 0.02, z = - 3.20, p = 0.001) and (b) positive association between engagement with healthcare providers and medication adherence (ß = 0.55, OR = 1.73, z = 2.62, p = 0.009). Females showed no association between any of these factors. Anxiety and stigma were not significantly associated with medication adherence. Path analysis modeling for males had a very good fit (CFI = 1, TLI = 1, RMSEA = 0); none of the regression coefficients was significant for females. The significant relationship between depression and medication adherence among males was fully mediated by engagement with healthcare providers. Findings suggest that adherence interventions for PLWH should be tailored by biological sex.

Older Adults Can Successfully Monitor Symptoms Using an Inclusively Designed Mobile Application.

OBJECTIVES: Patient-Reported Outcomes Measurement Information System (PROMIS) measures can monitor patients with chronic illnesses outside of healthcare settings. Unfortunately, few applications that collect electronic PROMIS measures are designed using inclusive design principles that ensure wide accessibility and usability, thus limiting use by older adults with chronic illnesses. Our aim was to establish the feasibility of using an inclusively designed mobile application tailored to older adults to report PROMIS measures by examining (1) PROMIS scores collected with the application, (2) patient-reported usability of the application, and (3) differences in usability by age. DESIGN: Cross-sectional feasibility study. SETTING: Inpatient and outpatient cardiac units at an urban academic medical center. PARTICIPANTS: A total of 168 English- and Spanish-speaking older adults with heart failure. INTERVENTION: Participants used an inclusively designed mobile application to self-report PROMIS measures. MEASUREMENTS: Eleven PROMIS Short-Form questionnaires (Anxiety, Ability to Participate in Social Roles and Activities, Applied Cognition-Abilities, Depression, Emotional Distress-Anger, Fatigue, Global Mental Health, Global Physical Health; Pain Interference, Physical Function, Sleep Disturbance), and a validated health technology usability survey measuring Perceived Ease-of-Use and Usefulness of the application. RESULTS: Overall, 27% of participants were between 65 and 74 years of age, 10% were 75 years or older, 63% were male, 32% were white, and 96% had two or more medical conditions. There was no missing PROMIS data, and mean PROMIS scores showed the greatest burden of pain, fatigue, and physical function in the sample. Usability scores were high and not associated with age (Perceived Ease-of-Use P = .77; Perceived Usefulness P = .91). CONCLUSION: It is feasible for older adults to use an inclusively designed application to report complete PROMIS data with high perceived usability. To ensure data completeness and the opportunity to study multiple domains of physical, mental, and social health, future work should use inclusive design principles for applications collecting PROMIS measures among older adults. J Am Geriatr Soc 68:1313-1318, 2020.

Visual analogies, not graphs, increase patients' comprehension of changes in their health status.

OBJECTIVES: Patients increasingly use patient-reported outcomes (PROs) to self-monitor their health status. Visualizing PROs longitudinally (over time) could help patients interpret and contextualize their PROs. The study sought to assess hospitalized patients' objective comprehension (primary outcome) of text-only, non-graph, and graph visualizations that display longitudinal PROs. MATERIALS AND METHODS: We conducted a clinical research study in 40 hospitalized patients comparing 4 visualization conditions: (1) text-only, (2) text plus visual analogy, (3) text plus number line, and (4) text plus line graph. Each participant viewed every condition, and we used counterbalancing (systematic randomization) to control for potential order effects. We assessed objective comprehension using the International Organization for Standardization protocol. Secondary outcomes included response times, preferences, risk perceptions, and behavioral intentions. RESULTS: Overall, 63% correctly comprehended the text-only condition and 60% comprehended the line graph condition, compared with 83% for the visual analogy and 70% for the number line (P = .05) conditions. Participants comprehended the visual analogy significantly better than the text-only (P = .02) and line graph (P = .02) conditions. Of participants who comprehended at least 1 condition, 14% preferred a condition that they did not comprehend. Low comprehension was associated with worse cognition (P < .001), lower education level (P = .02), and fewer financial resources (P = .03). CONCLUSIONS: The results support using visual analogies rather than text to display longitudinal PROs but caution against relying on graphs, which is consistent with the known high prevalence of inadequate graph literacy. The discrepancies between comprehension and preferences suggest factors other than comprehension influence preferences, and that future researchers should assess comprehension rather than preferences to guide presentation decisions.

Informal Caregiver Decision-Making Factors Associated With Technology Adoption and Use in Home Healthcare: A Systematic Scoping Review.

Technology systems to alleviate the burden of caregiving are increasing in use. The home is a unique place where chronic disease management is often performed by informal caregivers, yet how caregivers make decisions about adopting a specific technology has not been thoroughly explored. This systematic scoping review mapped evidence on decision-making factors associated with technology adoption and use by caregivers of patients receiving care at home. We followed the recommendations developed by members of the Joanna Briggs Institute. Four electronic databases (PubMed, Medline, CINAHL, and Embase) were searched using both medical subject headings (MeSH terms) and key words. A total of six papers were included for data synthesis. Factors such as information, comprehension, motivation, time, perceived burden, and perceived caregiving competency were found to affect adoption of technology. There are other factors uniquely springing from the patient and technology, as well as shared issues between caregivers and patient, and caregivers and technology. Although some factors depend on technology type and patient diagnosis, there were some common factors across the research. Those factors can be carefully considered in referring technology use for caregivers. More focused study in this underinvestigated area is much needed.

A Systematic Review of Patient-Facing Visualizations of Personal Health Data.

OBJECTIVES: As personal health data are being returned to patients with increasing frequency and volume, visualizations are garnering excitement for their potential to facilitate patient interpretation. Evaluating these visualizations is important to ensure that patients are able to understand and, when appropriate, act upon health data in a safe and effective manner. The objective of this systematic review was to review and evaluate the state of the science of patient-facing visualizations of personal health data. METHODS: We searched five scholarly databases (PubMed, Embase, Scopus, ACM Digital Library [Association for Computing Machinery Digital Library], and IEEE Computational Index [Institute of Electrical and Electronics Engineers Computational Index]) through December 1, 2018 for relevant articles. We included English-language articles that developed or tested one or more patient-facing visualizations for personal health data. Three reviewers independently assessed quality of included articles using the Mixed methods Appraisal Tool. Characteristics of included articles and visualizations were extracted and synthesized. RESULTS: In 39 articles included in the review, there was heterogeneity in the sample sizes and methods for evaluation but not sample demographics. Few articles measured health literacy, numeracy, or graph literacy. Line graphs were the most common visualization, especially for longitudinal data, but number lines were used more frequently in included articles over past 5 years. Article findings suggested more patients understand the number lines and bar graphs compared with line graphs, and that color is effective at communicating risk, improving comprehension, and increasing confidence in interpretation. CONCLUSION: In this review, we summarize types and components of patient-facing visualizations and methodologies for development and evaluation in the reviewed articles. We also identify recommendations for future work relating to collecting and reporting data, examining clinically actionable boundaries for diverse data types, and leveraging data science. This work will be critically important as patient access of their personal health data through portals and mobile devices continues to rise.

Factors Associated With Live Discharge of Heart Failure Patients From Hospice: A Multimethod Study.

OBJECTIVES: This study identified sociodemographic and clinical factors that predicted live discharge among home hospice patients with heart failure, and related these findings to perspectives among health care providers about challenges to caring for these patients. BACKGROUND: Hospice patients with heart failure are frequently discharged from hospice before death ("live discharge"). However, little is known about the factors and circumstances associated with live discharge among patients with heart failure. METHODS: Quantitative analyses of patient medical records (N = 1,498) and qualitative interviews were performed with health care providers (n = 19) at a not-for-profit hospice agency in New York City. RESULTS: Thirty percent of home hospice patients with heart failure experienced a live discharge, most frequently due to 911 calls that led to acute hospitalization. The odds of acute hospitalization were higher for younger patients (age 18 to 74 years: adjusted odds ratio [AOR]: 2.10; 95% confidence interval [CI]: 1.34 to 3.28), African American (AOR: 2.06; 95% CI: 1.31 to 3.24) or Hispanic (AOR: 2.99; 95% CI: 1.99 to 4.50) patients, and higher functioning patients (Palliative Performance Scores of 50% to 70%; AOR: 5.68; 95% CI: 3.66 to 8.79). Qualitative interviews with health care providers highlighted the unique characteristics of heart failure (e.g., sudden changes in patients' condition), the importance of patients' understanding of hospice and their own prognosis, and the role of sociocultural and family context in precipitating and potentially preventing live discharge (e.g., absence of social supports in the home). CONCLUSIONS: Live discharge from hospice, especially due to acute hospitalization, is common with heart failure. Greater attention is needed for patients' knowledge of and readiness for hospice care, especially among younger and diverse populations, and for factors related to the social and family context in which hospice care is provided.

Use of the Palliative Performance Scale to estimate survival among home hospice patients with heart failure.

AIMS: Estimating survival is challenging in the terminal phase of advanced heart failure. Patients, families, and health-care organizations would benefit from more reliable prognostic tools. The Palliative Performance Scale Version 2 (PPSv2) is a reliable and validated tool used to measure functional performance; higher scores indicate higher functionality. It has been widely used to estimate survival in patients with cancer but rarely used in patients with heart failure. The aim of this study was to identify prognostic cut-points of the PPSv2 for predicting survival among patients with heart failure receiving home hospice care. METHODS AND RESULTS: This retrospective cohort study included 1114 adult patients with a primary diagnosis of heart failure from a not-for-profit hospice agency between January 2013 and May 2017. The primary outcome was survival time. A Cox proportional-hazards model and sensitivity analyses were used to examine the association between PPSv2 scores and survival time, controlling for demographic and clinical variables. Receiver operating characteristic curves were plotted to quantify the diagnostic performance of PPSv2 scores by survival time. Lower PPSv2 scores on admission to hospice were associated with decreased median (interquartile range, IQR) survival time [PPSv2 10 = 2 IQR: 1-5 days; PPSv2 20 = 3 IQR: 2-8 days] IQR: 55-207. The discrimination of the PPSv2 at baseline for predicting death was highest at 7 days [area under the curve (AUC) = 0.802], followed by an AUC of 0.774 at 14 days, an AUC of 0.736 at 30 days, and an AUC of 0.705 at 90 days. CONCLUSIONS: The PPSv2 tool can be used by health-care providers for prognostication of hospice-enrolled patients with heart failure who are at high risk of near-term death. It has the greatest utility in patients who have the most functional impairment.