Barriers to accessing care for cardiometabolic disorders in Malawi: partners as a source of resilience for people living with HIV.

BACKGROUND: People living with HIV (PLWH) are at increased risk of cardiometabolic disorders (CMD). Adequate access to care for both HIV and CMD is crucial to improving health outcomes; however, there is limited research that have examined couples' experiences accessing such care in resource-constrained settings. We aimed to identify barriers to accessing CMD care among PLWH in Malawi and the role of partners in mitigating these barriers. METHODS: We conducted a qualitative investigation of barriers to CMD care among 25 couples in Malawi. Couples were eligible if at least one partner was living with HIV and had hypertension or diabetes (i.e., the index patient). Index patients were recruited from HIV care clinics in the Zomba district, and their partners were enrolled thereafter. Interviews were conducted separately with both partners to determine barriers to CMD care access and how partners were involved in care. RESULTS: Participants framed their experiences with CMD care by making comparisons to HIV treatment, which was free and consistently available. The main barriers to accessing CMD care included shortage of medications, cost of tests and treatments, high cost of transportation to health facilities, lengthy wait times at health facilities, faulty or unavailable medical equipment and supplies, inadequate monitoring of patients' health conditions, some cultural beliefs about causes of illness, use of herbal therapies as an alternative to prescribed medicine, and inadequate knowledge about CMD treatments. Partners provided support through decision-making on accessing medical care, assisting partners in navigating the healthcare system, and providing financial assistance with transportation and treatment expenses. Partners also helped manage care for CMD, including communicating health information to their partners, providing appointment reminders, supporting medication adherence, and supporting recommended lifestyle behaviors. CONCLUSIONS: Couples identified many barriers to CMD care access, which were perceived as greater challenges than HIV care. Partners provided critical forms of support in navigating these barriers. With the rise of CMD among PLWH, improving access to CMD care should be prioritized, using lessons learned from HIV and integrated care approaches. Partner involvement in CMD care may help mitigate most barriers to CMD care.

Caregivers' Contributions to Heart Failure Self-care: An Updated Systematic Review.

BACKGROUND: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. OBJECTIVE: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? METHODS: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. RESULTS: Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. CONCLUSIONS: Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

"I too have a responsibility for my partner's life": Communal coping among Malawian couples living with HIV and cardiometabolic disorders.

RATIONALE: HIV and cardiometabolic disorders including hypertension and diabetes pose a serious double threat in Malawi. Supportive couple relationships may be an important resource for managing these conditions. According to the theory of communal coping, couples will more effectively manage illness if they view the illness as "our problem" (shared illness appraisal) and are united in shared behavioral efforts. METHODS: This study qualitatively investigated communal coping of 25 couples living with HIV and hypertension or diabetes in Zomba, Malawi. Partners were interviewed separately regarding relationship quality, shared illness appraisal, communal coping, and dyadic management of illness. RESULTS: Most participants (80%) were living with HIV, and more than half were also living with hypertension. Most participants expressed high levels of unity and the view that illness was "our problem." In some couples, partners expected but did not extend help and support and reported little collaboration. Communal coping and dyadic management were strongly gendered. Some women reported a one-sided support relationship in which they gave but did not receive support. Women were also more likely to initiate support interactions and offered more varied support than men. In couples with poor relationship quality and weak communal coping, dyadic management of illness was also weak. Partner support was particularly crucial for dietary changes, as women typically prepared meals for the entire family. Other lifestyle changes that could be supported or hindered by a partner included exercise, stress reduction, and medication adherence. CONCLUSION: We conclude that gendered power imbalances may influence the extent to which couple-level ideals translate into actual communal coping and health behaviors. Given that spouses and families of patients are also at risk due to shared environments, we call for a shift from an illness management paradigm to a paradigm of optimizing health for spouses and families regardless of diabetes or hypertension diagnosis.

Home alone or connected: Caregiver communication and training from health providers.

BACKGROUND: As care shifts from institutional to community settings, family caregivers are providing increasing support to older adults, including complex medical/nursing care. In the mid-late pandemic, technology advancements such as use of online patient portals present opportunities for communication and care delivery. This study aims to assess the association between caregiver medical/nursing tasks or patient portal use with contact, communication, and training of caregivers by healthcare providers. METHODS: We conducted a cross-sectional analysis of caregiver data from the 2021 National Study of Caregiving (NSOC), linked to the National Health and Aging Trends Study (NHATS). NHATS is nationally-representative, annual survey of Medicare enrollees; NSOC surveys family/unpaid caregivers of NHATS participants. Logistic regression tested association between whether the caregiver does medical/nursing tasks or uses an online patient portal to contact the medical team (independent variables), and communication with or training by the medical team (dependent variables). RESULTS: Participants were 1590 caregivers of living, community-dwelling older adults. More than half (54%) reported no contact with the care recipient's medical team in the past year. Caregivers who did medical/nursing tasks (OR = 3.10; 95% CI: 2.16, 4.46) or who used patient portals (OR = 3.28; 95% CI: 1.96, 5.51) had higher odds of contacting the older adult's medical team. Thirty percent of caregivers stated communication was either not at all or just a little helpful. Sixty-seven percent reported that providers rarely asked if they needed help managing the older adult's treatments. Just 6% of caregivers reported receiving any caregiver training in the last year. CONCLUSIONS: Both medical/nursing tasks and online patient portal use were independently associated with contact with health providers. Overall contact, communication, and training were limited or of variable value. Despite recent policy changes and technology advancement, there is still a need for improved integration of caregivers into health teams with ongoing assessment of their needs.

Caregiving and all-cause mortality in postmenopausal women: Findings from the Women's Health Initiative.

BACKGROUND: Caregiving is commonly undertaken by older women. Research is mixed, however, about the impact of prolonged caregiving on their health, well-being, and mortality risk. Using a prospective study design, we examined the association of caregiving with mortality in a cohort of older women. METHODS: Participants were 158,987 postmenopausal women aged 50-79 years at enrollment into the Women's Health Initiative (WHI) who provided information on current caregiving status and caregiving frequency at baseline (1993-1998) and follow-up (2004-2005). Mortality was ascertained from baseline through March of 2019. Cox regression with caregiving status defined as a time-varying exposure was used to estimate hazard ratios (HR) and 95% confidence intervals (CI) for mortality, adjusting for sociodemographic factors, smoking, and history of diabetes, hypertension, cardiovascular disease (CVD), and cancer. Stratified analyses explored whether age, race-ethnicity, depressive symptoms, frequency of caregiving, optimism, and living status modified the association between caregiver status and mortality. RESULTS: At baseline, 40.7% of women (mean age 63.3 years) self-identified as caregivers. During a mean 17.5-year follow-up, all-cause mortality (50,526 deaths) was 9% lower (multivariable-adjusted HR = 0.91, 95% CI: 0.89-0.93) in caregivers compared to non-caregivers. The inverse association between caregiving and all-cause mortality did not differ according to caregiving frequency or when stratified by age, race-ethnicity, depressive symptoms, optimism, or living status (interaction p > 0.05, all). Caregiving was inversely associated with CVD and cancer mortality. CONCLUSION: Among postmenopausal women residing across the United States, caregiving was associated with lower mortality. Studies detailing the type and amount of caregiving are needed to further determine its impact on older women.

"High blood pressure comes from thinking too much": Understandings of illness among couples living with cardiometabolic disorders and HIV in Malawi.

Cardiometabolic disorders (CMD) such as hypertension and diabetes are increasingly prevalent in sub-Saharan Africa, placing people living with HIV at risk for cardiovascular disease and threatening the success of HIV care. Spouses are often the primary caregivers for people living with CMD, and understanding patients' and partners' conceptions of CMD could inform care. We conducted semi-structured interviews with 25 couples having a partner living with HIV and either hypertension or diabetes. Couples were recruited from HIV clinics in Malawi and were interviewed on beliefs around symptoms, causation, prevention, and treatment for CMD. Data were analyzed at the individual and dyadic levels using framework analysis and Kleinman's theory of explanatory models as a lens. On average, participants were 51 years old and married for 21 years. Approximately 57%, 14%, and 80% had hypertension, diabetes, and HIV. Couples endorsed a combination of biomedical explanatory models (beliefs around physical and mental health) and traditional explanatory models (beliefs around religion and natural remedies), although tended to emphasize the biomedical model. Half of couples believed stress was the main cause of hypertension. For diabetes, diet was believed to be a common cause. In terms of prevention, dietary changes and physical activity were most frequently mentioned. For disease management, medication adherence and diet modifications were emphasized, with some couples also supporting herbal remedies, stress reduction, and faith in God as strategies. Participants were generally more concerned about CMD than HIV due to poor access to CMD medications and beliefs that CMD could lead to sudden death. Within couples, partners often held many of the same beliefs but diverged around which etiological or preventive factors were most important (e.g., stress versus diet) and the best diet for CMD. Health education programs should involve primary partners to build knowledge of CMD and address overlap with HIV, and reinforce accurate information on lifestyle factors for the prevention and treatment of CMD.

Remote monitoring titration clinic to implement guideline-directed therapy for heart failure patients with reduced ejection fraction: a pilot quality-improvement intervention.

Introduction: Guideline-directed medical therapy (GDMT) is the recommended treatment for heart failure with reduced ejection fraction (HFrEF). However, the implementation remains limited, with suboptimal use and dosing. The study aimed to assess the feasibility and effect of a remote monitoring titration program on GDMT implementation. Methods: HFrEF patients were randomly assigned to receive either usual care or a quality-improvement remote titration with remote monitoring intervention. The intervention group used wireless devices to transmit heart rate, blood pressure, and weight data daily, which were reviewed by physicians and nurses every 2-4 weeks. Medication tolerance was assessed via phone, and dosage instructions were given. This workflow was repeated until target doses were reached or further adjustments were not tolerated. A 4-GDMT score measured use and target dosage, with the primary endpoint being the score at 6 months follow-up. Results: Baseline characteristics were similar (n = 55). A median of 85% of patients complied with transmitting device data every week. At the 6-month follow-up, the intervention group had a 4-GDMT score of 64.6% compared to 56.5% in the usual care group (p = 0.01), with a difference of 8.1% (95% CI: 1.7%-14.5%). Similar results were seen at the 12-month follow-up [difference 12.8% (CI: 5.0%-20.6%)]. The intervention group showed a positive trend in ejection fraction and natriuretic peptides, with no significant difference between groups. Conclusions: The study suggests that a full-scale trial is feasible and that utilizing a remote titration clinic with remote monitoring has the potential to enhance the implementation of guideline-directed therapy for HFrEF.

Unmet Social Needs and Patterns of Hair Cortisol Concentration in Mother-Child Dyads.

Background: Mothers and their children demonstrate dyadic synchrony of hypothalamic-pituitary-adrenal (HPA) axis function, likely influenced by shared genetic or environmental factors. Although evidence has shown that chronic stress exposure has physiologic consequences for individuals-including on the HPA axis-minimal research has explored how unmet social needs such as food and housing instability may be associated with chronic stress and HPA axis synchrony in mother-child dyads. Methods: We conducted a secondary analysis of data from 364 mother-child dyads with low-income recruited during a randomized trial conducted in an urban pediatric clinic. We used latent profile analysis (LPA) to identify subgroups based on naturally occurring patterns of within-dyad hair cortisol concentration (HCC). A logistic regression model predicted dyadic HCC profile membership as a function of summative count of survey-reported unmet social needs, controlling for demographic and health covariates. Results: LPA of HCC data from dyads revealed a 2-profile model as the best fit. Comparisons of log HCC for mothers and children in each profile group resulted in significantly "higher dyadic HCC" versus "lower dyadic HCC" profiles (median log HCC for mothers: 4.64 vs 1.58; children: 5.92 vs 2.79, respectively; P < .001). In the fully adjusted model, each one-unit increase in number of unmet social needs predicted significantly higher odds of membership in the higher dyadic HCC profile when compared to the lower dyadic HCC profile (odds ratio = 1.13; 95% confidence interval [1.04-1.23]; P = .01). Conclusion: Mother-child dyads experience synchronous patterns of physiologic stress, and an increasing number of unmet social needs is associated with a profile of higher dyadic HCC. Interventions aimed at decreasing family-level unmet social needs or maternal stress are, therefore, likely to affect pediatric stress and related health inequities; efforts to address pediatric stress similarly may affect maternal stress and related health inequities. Future research should explore the measures and methods needed to understand the impact of unmet social needs and stress on family dyads.

Impacts of Culture on Perceptions of Intimate Partner Violence Among Fijian Indian Women in the United States.

INTRODUCTION: South Asian women are at a higher risk for experiencing intimate partner violence (IPV) in the United States. Fijian Indian (FI) women are part of the diverse South Asian diaspora; however, there are no published data on their experience with IPV. This phenomenological study (a) examined if FI culture influences how women define, experience, and seek help for IPV and (b) identified impacts these themes have on FI women's IPV-related help-seeking, behaviors in regard to U.S. health systems and law enforcement. METHODS: Ten FI women in California, 18 years and older, who either were born in Fiji or had parents born in Fiji, were recruited through convenience and snowball sampling. Semistructured interviews took place either face-to-face or via Zoom. Transcribed interview data underwent reflective thematic analysis by two members of the research team. RESULTS: Normalizing and silencing of IPV events are bolstered by cultural practices of (a) familism/collectivism that ask women to prioritize family intactness over their own emotional and physical safety, (b) traditional patriarchal gender roles, (c) threats of shame and judgment within the community, and (d) the gendered hierarchy tenets of some forms of Hinduism. FI women are more inclined to seek help for IPV from within versus outside the family, with healthcare providers and law enforcement described as women's last choices for assistance. CONCLUSIONS: Although a small and regionalized immigrant community, this study of FI women reflects the importance of health and human service providers' understanding of the histories and cultural nuances of the local immigrant populations they serve.

A State-of-the-Art Review of Teach-Back for Patients and Families With Heart Failure: How Far Have We Come?

BACKGROUND: Heart failure (HF) prevalence has risen for more than a decade. Effective patient and family education strategies for HF are needed on a global scale. One widely used method of education is the teach-back method, where learners are provided information, then their understanding assessed by "teaching it back" to the educator. PURPOSE: This state-of-the-art review article seeks to examine the evidence focusing on the teach-back method of patient education and patient outcomes. Specifically, this article describes (1) the teach-back process, (2) teach-back's effect on patient outcomes, (3) teach-back in the context of family care partners, and (4) recommendations for future research and practice. CONCLUSIONS: Study investigators report the use of teach-back, but few describe how teach-back was utilized. Study designs vary widely, with few having a comparison group, making conclusions across studies challenging. The effect of teach-back on patient outcomes is mixed. Some studies showed fewer HF readmissions after education using teach-back, but different times of measurement obscure understanding of longitudinal effects. Heart failure knowledge improved across most studies after teach-back interventions; however, results related to HF self-care were mixed. Despite family care partner involvement in several studies, how they were included in teach-back or the associated effects are unclear. CLINICAL IMPLICATIONS: Future clinical trials that evaluate the effect of teach-back education on patient outcomes, such as short- and long-term readmission rates, biomarkers, and psychological measures, are needed, as patient education is the foundation for self-care and health-related behaviors.

Person with Heart Failure and Care Partner Dyads: Current Knowledge, Challenges, and Future Directions: State-of-the-Art Review.

Over the past decade, there has been substantial growth in heart failure (HF) research that focuses on persons with HF and their care partners (family members or other close friends that provide unpaid support) as an interdependent team, or care dyad. In this state-of-the-art review, we use a dyadic lens to identify and summarize current research on HF care dyads, from qualitative studies, to nonexperimental quantitative studies, to randomized controlled trials. Although much work has been done, this literature is younger and less well-developed than care dyad literatures from other conditions (eg, cancer, Alzheimer's disease). We discuss the substantial challenges and limitations in this body of work, with an eye toward addressing common issues that impact rigor. We also look toward future directions, and discuss the promise dyadic research holds for improving patient, care partner, and relationship health.

A review of mental health disparities during COVID-19: Evidence, mechanisms, and policy recommendations for promoting societal resilience.

Social and economic inequality are chronic stressors that continually erode the mental and physical health of marginalized groups, undermining overall societal resilience. In this comprehensive review, we synthesize evidence of greater increases in mental health symptoms during the COVID-19 pandemic among socially or economically marginalized groups in the United States, including (a) people who are low income or experiencing homelessness, (b) racial and ethnic minorities, (c) women and lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ+) communities, (d) immigrants and migrants, (e) children and people with a history of childhood adversity, and (f) the socially isolated and lonely. Based on this evidence, we propose that reducing social and economic inequality would promote population mental health and societal resilience to future crises. Specifically, we propose concrete, actionable recommendations for policy, intervention, and practice that would bolster five "pillars" of societal resilience: (1) economic safety and equity, (2) accessible healthcare, including mental health services, (3) combating racial injustice and promoting respect for diversity, equity, and inclusion, (4) child and family protection services, and (5) social cohesion. Although the recent pandemic exposed and accentuated steep inequalities within our society, efforts to rebuild offer the opportunity to re-envision societal resilience and policy to reduce multiple forms of inequality for our collective benefit.

The Association Between Habitual Sleep Duration and Blood Pressure Control in United States (US) Adults with Hypertension.

Purpose: This study examined the relationship between habitual sleep duration and blood pressure (BP) control in adults with hypertension. Methods: This cross-sectional study used data of 5163 adults with hypertension obtained from the 2015-2018 National Health and Nutrition Examination Survey (NHANES). Multivariable logistic regression was used to analyze the association between habitual sleep duration and BP control. Habitual sleep duration was self-reported and defined as the amount of sleep usually obtained in a night or main sleep period during weekdays or workdays. It was categorized as <6, 6 - <7, 7-9, and >9 hours. BP control was defined as average systolic BP <130mmHg and diastolic BP <80mmHg. Results: Results from the fully adjusted models show that among all adults with hypertension, habitual sleep duration of <6 hours night/main sleep period was associated with reduced odds of BP control (OR = 0.53, 95% CI: 0ss.37-0.76, P = 0.001) when compared to 7-9 hours. In the subpopulation of adults who were on antihypertensive medication, those with a sleep duration of <6 hours had lower odds of BP control than those with a sleep duration of 7-9 hours (OR = 0.53, 95% CI: 0.36-0.77, P = 0.002). No significant differences were noted in all adults with hypertension and in the subpopulation of those on antihypertensive medication in BP control between the reference sleep duration group (7-9 hours) and the 6 - <7 or >9 hours groups. There were no significant differences across age groups or gender in the relationship between habitual sleep duration and BP control. Conclusion: Sleep duration of <6 hours is associated with reduced odds of hypertension control. These significant findings indicate that interventions to support adequate habitual sleep duration may be a promising addition to the current hypertension management guidelines.

COVID-19 vaccine hesitancy and intent in California registered nurses.

Despite a national vaccination effort prioritizing frontline healthcare workers, COVID-19 vaccination rates among nurses have been lower than necessary to protect workforce and patient health. Historically, nurses have been more vaccine hesitant than other healthcare workers. To assess the vaccine attitudes and COVID-19 vaccine intent of California's registered nurses, we conducted a statewide cross-sectional survey among 603 licensed RNs working in direct patient care. Of 167 respondents (27.7%), 111 met inclusion criteria. Their mean score of 3.01 on a 6-point rating scale on the Vaccine Attitudes Examination scale measuring general vaccine hesitancy was comparable to previous findings among U.S. West Coast adults. Greater vaccine hesitancy was significantly associated with lower COVID-19 vaccine intent, after controlling for relevant confounders. Since nurses make up the largest portion of the healthcare workforce, it is crucial to specifically address this group's vaccine hesitancy.

Factors associated with habitual sleep duration in US adults with hypertension: a cross-sectional study of the 2015-2018 National Health and Nutrition Examination Survey.

BACKGROUND: The relationship between inadequate sleep duration and hypertension risk has been established in the general population, but there is a gap in the literature on predictors of habitual sleep duration in adults with hypertension. This study examined factors associated with habitual sleep duration among adults with hypertension in the United States (US). METHODS: Data of 5660 adults with hypertension were obtained by combining the 2015-2018 cycles of the National Health and Nutrition Examination Survey (NHANES). Survey weighted multinomial logistic regression models were fit to examine factors associated with short (< 7 h) and long (> 9 h) sleep duration with adequate sleep duration (7-9 h) as the reference. RESULTS: The prevalence of self-reported adequate sleep duration was 65.7%, while short sleep duration was 23.6%, and long sleep duration 10.7%. Short sleep duration (compared to adequate sleep duration) was positively associated with history of seeking help for sleeping difficulties (relative risk ratio [RRR], 1.25; 95% confidence interval [CI], 1.02-1.53), Non-Hispanic Black race/ethnicity (RRR, 2.08; 95% CI, 1.61-2.67), working ≥45 h/week (RRR, 1.81; 95% CI, 1.32-2.48), and negatively associated with older age ≥ 65 years (RRR, 0.63; 95% CI, 0.45-0.91) and female gender (RRR, 0.70; 95% CI, 0.56-0.88). Long sleep duration was positively associated with female gender (RRR, 1.24; 95% CI, 1.001-1.54), chronic kidney disease (RRR, 1.48; 95% CI, 1.14-1.92), moderate depressive symptoms (RRR, 1.62; 95% CI, 1.08-2.44), moderately severe to severe depressive symptoms (RRR, 1.89; 95% CI, 1.05-3.43), being in retirement (RRR, 3.46; 95% CI, 2.18-5.49), and not working due to health reasons (RRR, 4.87; 95% CI, 2.89-8.22) or other reasons (RRR, 3.29; 95% CI, 1.84-5.88). CONCLUSION: This population-based study identified factors independently associated with habitual sleep duration in adults with hypertension. These included help-seeking for sleeping difficulty, gender, age, chronic kidney disease, depressive symptoms, race/ethnicity, and employment status. These findings can help in the development of tailored approaches for promoting adequate sleep duration in adults with hypertension.

A Landscape of Subjective and Objective Stress in African-American Dementia Family Caregivers.

Stress is a significant part of daily life, and systemic social inequities, such as racism and discrimination, are well-established contributors of chronic stress for African Americans. Added exposure to the stress of caregiving may exacerbate adverse health outcomes. This secondary analysis describes subjective and objective stress in African American family caregivers, and relationships of subjective and objective stress to health outcomes. Baseline data from 142 African American dementia family caregivers from the "Great Village" study were described using means and frequencies; regression models and Pearson's correlation were used to examine associations between demographics, social determinants of health, and health outcomes. Mixed models were used to examine change and change variation in cortisol. Most caregivers had moderate degrees of stress. Stress was associated with sleep disruption and depressive symptoms, and discrimination appeared to be an independent contributor to depressive symptoms. This work provides a foundation for interpreting subjective and objective indicators of stress to tailor existing multicomponent interventions.

Caregiver subjective and physiological markers of stress and patient heart failure severity in family care dyads.

Greater family caregiver exposure to uncontrolled patient symptoms is predictive of greater caregiver psychological and physiological stress in dementia and other chronic illnesses, but these phenomena have not been well-studied in heart failure (HF) - a disease with high symptom burden. The purpose of this study was to test the hypothesis that worse patient functional status (as reflected by increasing HF symptoms) would be associated with elevated psychological and physiological stress for the caregiver. This was a secondary analysis of data from 125 HF caregivers in the Caregiver Opportunities for Optimizing Lifestyle (COOL) study. Psychological stress was measured on four dimensions: care-related strain/burden (Oberst Caregiving Burden Scale), depression (Center for Epidemiological Studies Depression Scale), anxiety (State-Trait Anxiety Index), and general stress (Perceived Stress Scale). Physiological stress was measured by markers of HPA axis function (elevated cortisol awakening response [CAR]), endothelial dysfunction (increased PAI-1), and inflammation (increased IL-6, hsCRP). HF patient functional status was quantified by caregiver assessment of New York Heart Association (NYHA) Class. Generalized linear models were used to test associations between patient NYHA Class and stress (one model per indicator). NYHA Class (ordinal) was backwards difference coded in each model to examine caregiver stress in relation to increasing levels of HF severity. Caregivers were mostly female and in their mid-fifties, with a slight majority of the sample being African American and the patient's spouse. Overall, patient functional status was associated with greater caregiver psychological and physiological stress. In terms of psychological stress, higher NYHA Class was significantly associated with greater caregiver anxiety and general stress, but not with caregiver burden or depression. In terms of physiological stress, higher NYHA Class was associated with elevated markers in all models (elevated CAR and higher IL-6, hsCRP, and PAI-1). Across models, most associations between NYHA Class and stress were present at relatively early stages of functional limitation (i.e. Class II), while others emerged when functional limitations became more severe. To inform timing and mechanisms for much-needed caregiver interventions, research is needed to determine which aspects of HF symptomatology are most stressful for caregivers across the HF trajectory.

A picture is worth a thousand words: exploring the roles of caregivers and the home environment of ventricular assist device patients.

AIMS: Caregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards. METHODS AND RESULTS: We conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment. CONCLUSIONS: These findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks.

"Talking Around It": A Qualitative Study Exploring Dyadic Congruence in Managing the Uncertainty of Living With a Ventricular Assist Device.

BACKGROUND: Vital components of communicating goals of care and preferences include eliciting the patient and caregiver's definition of quality of life, understanding meaningful activities and relationships, and exploring wishes for care at the end of life. Although current literature suggests framing conversations regarding end of life through the lens of meaning and quality of life, there is limited literature exploring dyadic congruence surrounding these important constructs among patients with ventricular assist devices (VADs) and their caregivers. OBJECTIVES: The purpose of this study was to explore congruence of VAD patient and caregiver perspectives regarding end of life, definitions of quality of life, and meaning in life while managing the uncertainty of living with a VAD. METHODS: We used thematic analysis to analyze semistructured qualitative interviews of 10 patient-caregiver dyads 3 to 12 months after VAD implantation. RESULTS: Three major themes were identified: (1) differing trajectories of uncertainty and worry, (2) a spectrum of end-of-life perspectives, and (3) enjoying everyday moments and independence. Overall, patients and caregivers had differing perspectives regarding uncertainty and end of life. Within-dyad congruence was most evident as dyads discussed definitions of meaning or quality of life. CONCLUSIONS: Dyadic perspectives on end of life, meaning in life, and quality of life can inform how palliative care and VAD teams approach conversations about planning for the end of life. Findings from this study can inform future shared decision-making interventions for patients living with VADs and their caregivers.