Addressing Social Determinants of Health in the Care of Patients With Heart Failure: A Scientific Statement From the American Heart Association.

Heart failure is a clinical syndrome that affects >6.5 million Americans, with an estimated 550 000 new cases diagnosed each year. The complexity of heart failure management is compounded by the number of patients who experience adverse downstream effects of the social determinants of health (SDOH). These patients are less able to access care and more likely to experience poor heart failure outcomes over time. Many patients face additional challenges associated with the cost of complex, chronic illness management and must make difficult decisions about their own health, particularly when the costs of medications and healthcare appointments are at odds with basic food and housing needs. This scientific statement summarizes the SDOH and the current state of knowledge important to understanding their impact on patients with heart failure. Specifically, this document includes a definition of SDOH, provider competencies, and SDOH assessment tools and addresses the following questions: (1) What models or frameworks guide healthcare providers to address SDOH? (2) What are the SDOH affecting the delivery of care and the interventions addressing them that affect the care and outcomes of patients with heart failure? (3) What are the opportunities for healthcare providers to address the SDOH affecting the care of patients with heart failure? We also include a case study (Data Supplement) that highlights an interprofessional team effort to address and mitigate the effects of SDOH in an underserved patient with heart failure.

Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association.

Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.

A longitudinal comparison of health-related quality of life in rural and urban recipients of left ventricular assist devices.

Left ventricular assist devices (LVAD) are a common treatment for advanced heart failure (HF) to improve ventricular function, symptoms, and health-related quality of life (HRQOL). Many LVAD recipients travel long distances from rural areas for LVAD implantation and follow-up care. Individuals with HF in rural settings who have not undergone LVAD implantation have reported poor HRQOL. However, to date, no studies have compared HF-specific or generic HRQOL in rural and urban LVAD recipients. The purpose of this study was to compare generic and HF-specific HRQOL longitudinally from preimplantation to 1-, 3-, and 6- months postimplant in a cohort of rural and urban LVAD recipients (n = 95; rural n = 32 and urban n = 63). We measured generic HRQOL using the European Quality of Life Visual Analog Scale and HF-specific HRQOL with the quality of life domain of the Kansas City Cardiomyopathy Questionnaire (KCCQ). Latent growth curve modeling identified two phases of change in generic and HF-specific HRQOL: the initial response to LVAD between preimplantation and 1-month postimplant and the subsequent change between 1- and 6-months postimplant. Comparable improvements in generic HRQOL were noted in rural and urban LVAD recipients during both phases of change. Urban LVAD recipients had greater initial improvements in HF-specific HRQOL (KCCQ) compared with rural recipients (13.0 ± 5.6, p = .02), but subsequent improvements were similar among rural and urban recipients. Ongoing assessment of generic and HF-specific HRQOL is necessary during LVAD therapy.

Adverse-Event Free Survival, Hospitalizations, and Mortality in Left Ventricular Assist Device Recipients: A Rural-Urban Cohort Comparison.

BACKGROUND: The number of individuals with advanced heart failure (HF) receiving left ventricular assist devices (LVADs) is growing. Postimplantation LVAD recipients return home to both rural and urban locations. The impact of rural or urban living on postimplantation outcomes has not been adequately explored. OBJECTIVE: This cohort study examined adverse event-free survival, hospitalization-free survival, and all-cause mortality between rural and urban LVAD recipients in the first 2 years after implantation. METHODS: Data from LVAD recipients (N = 141) implanted at a single center in the northeastern United States were analyzed. Recipients of LVAD were designated as rural or urban by county of residence. Adverse events, hospitalizations, and survival time were examined using multivariate Cox proportional hazards models. RESULTS: Thirty-seven percent of LVAD recipients in the cohort were rural. Two-thirds of all LVAD recipients experienced at least 1 adverse event (96/141, 68.1%). Although more urban recipients experienced adverse events, including death, rural versus urban models of both adverse events and survival were nonsignificant (adverse events: log-rank = 1.18, P = .28; hazard ratio [HR], 0.96; 95% confidence interval [CI], 0.57-1.63; P = .89; survival: log-rank =2.81, P = .09; HR, 0.45; 95% CI, 0.17-1.23; P = .12). Rural LVAD recipients experienced significantly more hospitalizations and shorter hospitalization-free survival (log-rank = 6.67, P = .009). However, the HR for survival was nonsignificant (HR, 1.5; 95% CI, 0.94-2.39; P = .08). CONCLUSIONS: Frequent adverse events and hospitalizations are of ongoing concern for LVAD recipients. More data are necessary to understand why urban LVAD recipients may experience shorter survival time compared with rural counterparts. Hospitalization may serve as a protective factor for rural LVAD recipients.

Incongruence of subjective memory impairment ratings and the experience of memory problems in older adults without dementia: a mixed methods study.

OBJECTIVES: The objective of this study was to describe the experiences of older adults living with subjective memory impairment (SMI) and examine the extent to which SMI severity was associated with impact of SMI on daily life. METHOD: A mixed methods convergent design was utilized. Participants with SMI (n = 19, mean age 80.7 years) were recruited from community settings. Semi-structured interviews were analyzed using thematic analysis; these findings were integrated with descriptive statistics from questionnaire and cognitive status data. RESULTS: The impact of SMI varied depending on the personal meaning individuals attributed to the experience. Older adults with normal cognition reported episodic memory problem compared to more pervasive problems reported by participants with mild cognitive deficits. The impact of memory problems ranged from frustration/embarrassment to avoidance of social activities, but the degree of emotional impact was not reflected in SMI severity or cognitive status. CONCLUSION: SMI is common in older adults without dementia but the impact on function and well-being is variable and does not seem to be associated with objective cognition. Future research is needed to validate these associations and to inform the development of SMI measures that accurately reflect older adults' experiences.

Resistiveness to Care as Experienced by Family Caregivers Providing Care for Someone With Dementia.

PURPOSE: This research explored family caregivers' lived experiences of resistiveness to care when they provided care for people with dementia. The goal was to identify a general meaning of family caregivers' lived experiences to target potential areas for future nursing interventions to help family caregivers manage their caregiving role and provide a base for future research surrounding resistiveness to care. DESIGN: Descriptive phenomenology was used to provide descriptions of eight family caregivers who provided care for someone with dementia and experienced resistiveness to care. Family caregivers were recruited from Alzheimer's support groups from June to November 2014. METHOD: Caregiver interviews were transcribed verbatim and analyzed using scientific phenomenology to identify essential constituents of the experience. FINDINGS: The identified general meaning structure contained five essential constituents. These included self-questioning of abilities; signal for increased future caregiver responsibilities; changed perception of personal self; unexpected emotional responses; and seeing a changed person, not the disease. CONCLUSIONS: Study findings represent family caregivers' lived perceptions of resistiveness to care, which are different from current research findings regarding nurses' perceptions of resistiveness to care. The identified meaning structure indicates focus areas for future research and for nursing interventions to help family caregivers manage their distress when experiencing resistiveness to care. CLINICAL RELEVANCE: Identification of the meaning caregivers ascribe to their lived experience of resistiveness to care (five essential constituents) provides nurses with opportunities to help family caregivers (coproviders of care) holistically. Supporting caregivers in their caregiving role can decrease caregiver distress when resistiveness to care occurs.

The Experiences of Younger Individuals Living With Heart Failure.

BACKGROUND: Heart failure (HF) impacts 1.7 million Americans between the ages of 20 and 59 years, but limited research exists addressing the issues unique to this age group. OBJECTIVE: The aim of this study was to investigate the experiences of younger persons living with HF. METHODS: Semistructured interviews (n = 18) were analyzed using a qualitative thematic analysis. RESULTS: Six themes emerged: (1) role fulfillment: participants who perceived their roles as a parent, caregiver, spouse, employee, and friend have been negatively affected by HF; (2) autonomy: participants frequently linked their well-being to a sense of independence, productivity, and purpose; (3) financial impact: most of the sample expressed financial instability further complicated by existing disability policies; (4) perception of self: recurrent statements revealed participants feeling judged because of their HF diagnosis and younger age; (5) retrospective life changes: participants reflected on past decisions and often blamed themselves for their current health; and (6) symptom burden: participants reported higher levels of psychosocial symptoms, such as depression, anxiety, and fatigue. CONCLUSIONS: Younger individuals living with HF reported overwhelmingly poor health-related quality of life that was linked to the 6 themes identified previously. The effect of HF was seen on numerous life events that traditionally occur earlier in the life course such as establishing a career, meaningful relationships, family, and financial security. This directly impacted health-related quality of life by disrupting what each individual perceived as important to them, which took a toll on their overall mental health. To provide holistic care to younger patients living with HF, interventions that address the heavy burden of psychosocial symptoms and policy changes associated with financial burden and disability laws must be developed.

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

Dyadic heart failure care types: qualitative evidence for a novel typology.

BACKGROUND: Compared with other chronic illness populations, relatively little is known about heart failure (HF) patient and caregiver spousal/partner dyads and what effect dyadic interactions have on self-care. OBJECTIVE: The aim of this study was to present a new typology of patient and caregiver dyadic interdependence in HF care, presenting exemplar cases of each type: patient oriented, caregiver oriented, collaboratively oriented, complementarily oriented. METHODS: Stake's instrumental case study methodology was used. Interviews were unstructured, consisting of open-ended questions exploring dyad's experiences with HF, audiorecorded, and transcribed. Cases were selected because they exhibited the necessary characteristics and also highlighted a unique, little understood variation in self-care practice. Each case represents a dyad's discussion of caring for HF in their normal environment. RESULTS: From 19 dyads, 5 exemplar case studies illustrate the 4 dyadic types. A fifth, incongruent case, defined as a case where the patient and caregiver indicated incongruent dyadic types, was included to highlight that not all dyads agree on their type. A major theme of Sharing Life infused all of the dyad's narratives. This typology advances the science of dyadic interdependence in HF self-care, explains possible impact on outcomes, and is an early theoretical conceptualization of these complex and dynamic phenomena. CONCLUSION: The cases illustrate how long-term dyads attempt to share the patient's HF care according to established patterns developed over the trajectory of their relationship. In keeping with the interdependence theory, these couples react to the patient's declining ability to contribute to his/her own care by maintaining their habitual pattern until forced to shift. This original pattern may or may not have involved the dyad working together. As the patient's dependence on the caregiver increases, the caregiver must decide whether to react out of self-interest or the patient's interest. Continued study of the typology is needed in nonspousal/partner dyads.

The work of spousal caregiving of older adults with end-stage heart failure.

Heart failure requires complex home management, which is typically performed by a spouse. Yet little is known about the actual "work" of caregiving in individuals with heart failure. The purpose of this study was to describe the types of work manifested in long-term spousal caregiving for older adults across the progression of heart failure. Secondary qualitative analysis was performed of the in-depth serial interview data of 20 spousal caregivers of individuals with heart failure age 62 and older, collected monthly over 12 to 14 months. The work of spousal caregiving impacted all aspects of the lives of spouses and was constant over time and across the course of heart failure. The work of caregiving was always present, even during times of medical stability, but the type of work and intensity varied throughout the course of the illness. Caregivers should be assessed for unmet needs throughout the course of heart failure, not just during the individuals' exacerbations or hospitalizations.

A Systematic Review of Interprofessional Palliative Care Education Programs.

CONTEXT: Interprofessional education (IPE) involving palliative and end-of-life content benefits learners by addressing interprofessional and palliative care (PC) competency needs. OBJECTIVES: A synthesis of educational approaches promoting interprofessional PC in academic and clinical settings would address research gaps and promote effective teaching. METHODS: A systematic review of interprofessional PC educational studies was conducted to summarize current approaches in PC IPE and to appraise teaching and research methods. Characteristics of excellence in interprofessional PC education established by Donesky et al. served as a framework for evaluating studies in this systematic review. RESULTS: A total of 39 articles met inclusion criteria for this review. Learners from medicine and nursing were the most included professions. University programs represented most studies, and evaluation methods demonstrated achievement of mostly self-reported outcomes like learner attitude and self-efficacy. While the effect of interprofessional collaboration on patient outcomes is well-documented, the effect of IPE on PC delivery is not. Although content spanned all interprofessional and PC domains, few studies addressed cultural aspects and fewer addressed well-being for the care provider. CONCLUSION: In light of the current healthcare landscape, there is an imminent need to address culture and provider well-being more directly through interprofessional PC education. Education and research must also move beyond university programs into health systems to support the professional development of clinicians for systems integration, sustainability, and impact on patient outcomes. Future evaluation of interprofessional PC education would be strengthened by multisite studies, randomized controlled trials, and repeated measures looking at outcomes over time.

Cost-Savings of Do Not Resuscitate Orders Among Elderly Patients With Heart Failure in the United States.

Do-not-resuscitate (DNR) orders should preclude the use of cardiopulmonary resuscitation and may be associated with patient outcomes for patients hospitalized with heart failure (HF). This study examined the association between DNR and costs, mortality, and length of stay. The study cohort was a national sample of 700 922 hospital admissions of patients aged >65 with a primary diagnosis of HF. Elderly HF patients who died with a DNR had cost-savings of $5640 ( P < 0.001). Patients with a DNR order were 8.9% points more likely to die before discharge than patients without ( P < 0.001), and patients who died with a DNR had a significantly shorter hospital stay by 1.51 days ( P < 0.001). DNR orders among elderly patients with HF are associated with cost-savings, as well as a higher mortality and shorter length of stay. In addition to primary benefits, advance care planning may aid in containing costs of care at end of life for HF.

A Systematic Review of Barriers and Facilitators of Pain Management in Persons with Dementia.

Approximately 50% of persons living with dementia experience pain, yet it is frequently undetected and inadequately managed resulting in adverse consequences. This review aims to synthesize evidence on the barriers and facilitators of pain management in persons living with dementia. PubMed, CINAHL, PsycINFO, and Web of Science datasets were used for article searching. Inclusion criteria were peer-reviewed original articles written in English that examined the barriers and facilitators of pain management for persons living with dementia. The Mixed Methods Appraisal Tool was used to evaluate the quality of the studies. A total of 26 studies were selected, including 18 qualitative and 3 quantitative (all high quality), as well as 5 mixed methods studies (low-to-high quality). Results were categorized into intrapersonal, interpersonal, environmental, and policy categories. Factors that impact pain management in dementia include cognitive and functional impairment, healthcare workers' knowledge, collaboration and communication, healthcare workers' understanding of patients' baseline behaviors, observation of behaviors, pain assessment tool use, pain management consistency, staffing level, pain guideline/policy, and training. Overall, pain management is challenging in persons living with dementia. The results indicate that there is a need for multi-component interventions that involves multidisciplinary teams to improve pain management in persons living with dementia at the intrapersonal, interpersonal, environmental, and policy levels. PERSPECTIVE: This review systematically synthesized barriers and facilitators of providing pain management in persons living with dementia. Results were presented in intrapersonal, interpersonal, environmental, and policy categories and suggests that multicomponent interventions involving multidisciplinary teams are needed to systematically improve pain management in persons living with dementia.

Disparities in Comorbidities in Lung Cancer: Findings From the Behavioral Risk Factor Surveillance System.

BACKGROUND: In persons with lung cancer, sex and race are independent predictors of comorbidities and are associated survival. It is unclear how comorbidity profiles differ across sex and race. OBJECTIVE: The objective was to examine comorbidity differences between men and women and Blacks and Whites. METHODS: Data from the 2014, 2016, 2017, and 2018 Behavioral Risk Factor Surveillance System were analyzed using descriptive statistics, χ2 test of independence, and multiple logistic regression. Variables included sociodemographics and comorbidities. RESULTS: Among individuals with lung cancer (N = 594), men were more likely to experience a heart attack (odds ratio [OR], 3.59; 95% confidence interval [CI], 1.62-7.96) and diabetes (OR, 2.83; 95% CI, 1.57-5.10) and less likely to experience depressive disorder (OR, 0.360; 95% CI, 0203-0.637). Black men (OR, 28.57; 95% CI, 9.22-88.55) and women (OR, 2.48; 95% CI, 1.02-6.05) were more likely to have a history of stroke. CONCLUSION: Findings show that there may be differences in patterns of comorbidities among individuals with lung cancer. As we continue to move toward individualized medicine in cancer care, future work in this area should examine social determinants of health and how they may influence the patterns of comorbidities. IMPLICATION FOR NURSES: Although nurses may be aware that certain groups have an increased risk for certain comorbid conditions, this study highlights what groups with lung cancer may be more likely to have certain comorbidities. Nurses can assess individuals for comorbidities and provide education on how to manage comorbidities during cancer treatment.

Engaging Families in Adult Cardiovascular Care: A Scientific Statement From the American Heart Association.

Family engagement empowers family members to become active partners in care delivery. Family members increasingly expect and wish to participate in care and be involved in the decision-making process. The goal of engaging families in care is to improve the care experience to achieve better outcomes for both patients and family members. There is emerging evidence that engaging family members in care improves person- and family-important outcomes. Engaging families in adult cardiovascular care involves a paradigm shift in the current organization and delivery of both acute and chronic cardiac care. Many cardiovascular health care professionals have limited awareness of the role and potential benefits of family engagement in care. Additionally, many fail to identify opportunities to engage family members. There is currently little guidance on family engagement in any aspect of cardiovascular care. The objective of this statement is to inform health care professionals and stakeholders about the importance of family engagement in cardiovascular care. This scientific statement will describe the rationale for engaging families in adult cardiovascular care, outline opportunities and challenges, highlight knowledge gaps, and provide suggestions to cardiovascular clinicians on how to integrate family members into the health care team.

A Concept Analysis of Resistiveness to Care.

People with cognitive impairment often require assistance with activities of daily living. It is when providing assistance with these activities that many caregivers experience behaviors that have been categorized as disruptive or problematic and called resistiveness to care. These behaviors are considered to be a source of burden and job burnout for caregivers. Nurses wanting to help caregivers, who manage these trying situations, need to understand the concept of resistiveness to care and communicate this knowledge clearly with health care providers. Therefore, a literature search was conducted in 2012 within the databases CINAHL, Medline (PubMed), ProQuest, and PsychINFO. This produced 40 relevant articles. Because no concept analysis existed for resistiveness to care, a principle-based concept analysis was performed. The analysis helped construct a theoretically defined concept. Further analysis highlighted that more research is needed to advance the concept of resistiveness to care to enhance professional communication surrounding this phenomenon.

Longitudinal family caregiving experiences in heart failure: Secondary qualitative analysis of interviews.

BACKGROUND: Considering the potential impacts of family caregivers on heart failure management and the costs of healthcare, health professionals need to pay attention to the challenges faced by family caregivers. OBJECTIVE: This study longitudinally explored the caregiving experiences of family caregivers of persons with heart failure. METHODS: Serial interview scripts collected from 53 family caregivers were analyzed using a content analysis method. RESULTS: The following themes emerged: (1) accumulating knowledge and skills for caregiving; (2) losing a sense of control; (3) balancing an unstable life; (4) constructing illness memory; (5) centering the patient in daily life; (6) accepting the loss of a family member; (7) coping with grief by drawing on social support; (8) facing financial responsibility; and (9) rethinking hospice care. CONCLUSION: Family caregivers experience concern about unpredictable caregiving years, disease's fluctuating symptoms and poor prognosis. More educational opportunities, financial counseling programs, and palliative care consultations should be provided.