Home Health Nurses' Perceptions of Caring for Persons With Severe and Persistent Mental Illnesses.

BACKGROUND: Severe and persistent mental illnesses (SPMIs) affect a significant portion of the adult population in the United States. Despite their enhanced medical disease burden, individuals with SPMIs often lack access to appropriate medical care. Home health services offer cost-effective options for caring for this population in the comfort of their homes. However, little is known about the perceptions of home health nurses providing care to persons with SPMIs, and how they are adjusting care to persons with SPMIs. AIMS: This study aimed to explore home health nurses' perspectives on caring for persons with SPMIs. METHODS: Using a grounded theory approach, individual semi-structured interviews were conducted with home health and home hospice nurses. The research questions focused on the nurses' experiences, barriers and facilitators to care, and the impact of the home environment on caring for persons with SPMIs. Data analysis followed coding procedures outlined in grounded theory, resulting in the development of an axial coding model. RESULTS/CONCLUSIONS: The findings provide valuable insights into the challenges and opportunities faced by home health nurses when providing care for individuals with SPMIs. The outcomes of this study are intended to contribute to the understanding of current care practices and can guide the allocation of resources to improve care for this vulnerable population, such as incorporating training specific to persons with severe psychiatric illnesses.

Palliative Care in Severe and Persistent Mental Illness: A Systematic Review.

Severe and persistent mental illnesses refer to a group of psychiatric disorders causing severe dysfunction in patients and include diagnoses such as schizophrenia, bipolar disorder, and major depression. Patients with severe and persistent mental illnesses have a complex symptomatology and face complicated medical disparities creating a difficult care process and reduced quality of life. Palliative care, a holistic approach to care that aims to reduce symptoms and stress of illness in persons living with chronic diagnoses, is appropriate within this population to address the complexity of care needs but is currently underutilized. The purpose of this review was to systematically review the literature to determine what is currently known about palliative care utilization in the severe and persistently mentally ill population. The databases systematically searched include PubMed, Cumulative Index for Nursing and Allied Health Literature, PsycINFO, and MEDLINE, to find all articles relevant to the research question. Keywords include "palliative care," "end-of-life care," and "severe and persistent mental illness," including all subsets. Literature was reviewed per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The results of this systematic review helped synthesize current information about this developing topic to inform clinicians on how to best integrate palliative care to this population.

Palliative Care: Oncology Nurses' Confidence in Provision to Patients With Cancer.

BACKGROUND: Oncology nurses are key providers of care to patients with cancer in all healthcare settings. However, little is known about oncology nurses' perceived confidence in providing all of the domains of palliative care. OBJECTIVES: The objectives of this study were to examine oncology nurses' perceived confidence in providing palliative care to patients with cancer and to identify the association between nurses' demographic and professional characteristics and their perceived confidence. METHODS: A descriptive correlational design was employed. The sample included RNs who provided care to patients with cancer and were members of the Oncology Nursing Society (ONS). Participants completed an online survey consisting of 14 demographic questions and a 50-item palliative care confidence scale. FINDINGS: Three hundred sixty-six ONS members completed the survey. Results showed that most oncology nurses were confident to very confident in providing palliative care to patients with cancer, but they lacked confidence in providing the psychosocial, spiritual, and legal and ethical aspects of care. Years of experience as an oncology nurse and palliative care training were significantly associated with perceived confidence in providing palliative care.

A Systematic Review on Barriers to Palliative Care in Oncology.

The number of people with cancer and the need for palliative care among this population is increasing in the United States. Despite this growing need, several barriers exist to the utilization of palliative care in oncology. The purpose of this study was to synthesize the evidence on the barriers to palliative care utilization in an oncology population. A systematic review of literature was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. PubMed, CINAHL, and Psych Info databases were used for the literature search. Articles were included if they: 1) focused on cancer, (2) examined and discussed barriers to palliative care, and c) were peer reviewed, published in English, and had an accessible full text. A total of 29 studies (8 quantitative, 18 qualitative, and 3 mixed-methods) were identified and synthesized for this review. The sample size of the included studies ranged from 10 participants to 313 participants. The barriers to palliative care were categorized into barriers related to the patient and family, b) barriers related to providers, and c) barriers related to the healthcare system or policy. The factors identified in this review provide guidance for intervention development to mitigate the existing barriers and facilitate the use palliative care in individuals with cancer.

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.

Family caregiver-reported outcomes regarding decision-making for left ventricular assist device implantation.

BACKGROUND: Family caregivers (FCGs) often participate in the decision for their loved one to receive a left ventricular assist device (LVAD). Little is known about the contribution of FCGs to this complex decision. OBJECTIVES: To investigate family caregiver-reported outcomes related to decision-making for LVAD implantation and their experiences post-implantation. METHODS: Descriptive thematic analysis was used to analyze longitudinal data. Thematic saturation was achieved. RESULTS: Three key themes emerged from the data. The main theme in the pre-implantation period was: Not a decision. The two themes in the post-implantation period were: More satisfaction than regret and Unanticipated situational change. CONCLUSIONS: Family caregiver-reported outcomes inform clinical practice and future research. FCGs of LVAD recipients did not see viable alternatives to LVAD implantation, were generally satisfied with post-implantation outcomes, and experienced unexpected life changes in the post-implantation period despite feeling prepared preoperatively. Education of both LVAD recipients and their FCGs must be optimized.

Support for Young Black Urban Women After Perinatal Loss.

PURPOSE: To describe the bereavement support needs of black urban women in late adolescence after perinatal loss. STUDY DESIGN AND METHODS: Eight black women aged 18 to 21 years who had experienced recent perinatal loss were interviewed in person or by telephone at three points in the 12 weeks that followed their loss to describe their perinatal bereavement experience and support needs. Data from the interviews were analyzed using constant comparative analysis. RESULTS: Black adolescent women need culturally appropriate bereavement support targeted at key transition points along the bereavement trajectory. They need accurate information, compassionate and respectful communication, and support from their mothers, grandmothers, and other women from their community of faith who have experienced perinatal loss. They value mementos, such as photographs and footprints. CLINICAL IMPLICATIONS: Nurses are well-positioned to be consistent caregivers and to provide clear, compassionate communication and anticipatory guidance to young black women experiencing perinatal loss. Attending to spiritual needs, harnessing family support, providing mementos, and encouraging reflection through journaling may help adolescent women find meaning and new perspectives on their bereavement experience.

Intergenerational Caregivers of Parents With End-Stage Heart Failure.

Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver-parent relationships, filial responsibility, and personal benefits and challengesConclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

Naive Expectations to Resignation: A Comparison of Life Descriptions of Newly Diagnosed Versus Chronic Persons Living With Stage D HF.

PURPOSE: This study examined life descriptions of persons with stage D heart failure (HF) comparing those newly diagnosed to those with chronic HF. METHODS: A secondary analysis of interviews from 75 participants followed in a longitudinal study of persons with stage D HF was thematically analyzed. There were 24 participants who were recently diagnosed with stage D HF (less than 2 years) and 51 participants with HF longer than 2 years. RESULTS: Both groups shared life descriptions along a continuum, where recently diagnosed participants described naive expectations with hope for improvement, while the chronic group appeared resigned to their fate and the reality of the limitations of living with HF. Four themes illustrated differences between the groups: outlook on life, activity adjustments, understanding of HF, and mood. CONCLUSIONS: Although persons with stage D HF share the same life descriptions, they have differing perspectives of life with HF. Findings from this study can help health-care providers tailor interventions based on the length of time from diagnosis.

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.

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure.

OBJECTIVES: To assess perceptions of illness severity and terminality in caregivers of advanced heart failure (HF) patients and how these perceptions influence utilization of palliative care and end-of life services. BACKGROUND: HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality. METHODS: This study was conducted using a qualitative design with in-depth interviews and content analysis. RESULTS: Most caregivers did not understand the severity of HF (68%) or disease terminality (67%). Patients were more likely to receive services when their caregivers expressed an understanding of illness severity and/or terminality. CONCLUSIONS: Inclusion of caregivers in discussions of goals of care, advance care planning, and palliative care and end-of-life services with patients and providers is imperative.

Patients' decision making process and expectations of a left ventricular assist device pre and post implantation.

OBJECTIVES: To examine patients' pre-implantation decision-making and pre and post-implantation expectations of left ventricular assist devices (LVADs). BACKGROUND: LVADs have been shown to improve both quantity and quality of life of patients living with Stage D heart failure (HF). However, they also pose significant risks. METHODS: 15 LVAD participants followed in a longitudinal study of Stage D HF patients were included in this thematic analysis. RESULTS: Three themes were identified: no choice; I thought I would be doing better; I feel good, but now what. Evidence from pre-implantation to post-implantation suggested that patients' perceived expectations of quality of life improvement were not met. CONCLUSIONS: In light of their declining health, most patients felt their only alternative to implantation was death. In the post-implantation period, patients expected greater improvements in their quality of life. Evidence based guidelines for discussions of goals of care, post-implant expectations, and palliative care are necessary.

Palliative Care in Heart Failure.

The number of patients with heart failure is growing; the associated morbidity and mortality remains dismal. Advance care planning, end-of-life conversations, and palliative care referrals are appropriate, but do not occur regularly. Palliative care focuses on patients and families from diagnosis, to hospice, death, and bereavement. It is delivered as basic palliative care by all providers and by specialty-certified palliative care specialists. Nurses are well-positioned to provide basic. Nurses are also instrumental in initiating referrals to the specialized palliative care team as the patient's needs become too complex or the disease progresses and the patient approaches the end of life.

Patient and Caregiver Incongruence in Advanced Heart Failure.

The important role of caregivers in heart failure (HF) management is well documented, but few studies have explored HF patient-caregiver dyads when dyadic incongruence is evident. The purpose of this study was to determine the prevalence of incongruence between HF patient-caregiver dyads, areas of incongruence, and the impact on individuals in the dyadic relationship. Data were collected as part of a longitudinal qualitative study examining the palliative care needs of HF dyads. Interviews with dyads determined to be incongruent were further analyzed. Of the 100 dyads, 47 were identified as being incongruent. Dyads were found to be incongruent in illness management, health care issues, and end-of-life decisions. Dyads that were incongruent reported more psychosocial issues and distress within the dyad and individually. Further research is needed to determine the impact of incongruence and whether interventions to modify incongruence will lead to improved HF patient and caregiver outcomes and experiences.

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.