Interprofessional education (IPE) involving palliative and end-of-life content benefits learners by addressing interprofessional and palliative care (PC) competency needs.
A synthesis of educational ...approaches promoting interprofessional PC in academic and clinical settings would address research gaps and promote effective teaching.
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.
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.
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.
Abstract 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.
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.
To investigate family caregiver-reported outcomes related to decision-making for LVAD implantation and their experiences post-implantation.
Descriptive thematic analysis was used to analyze longitudinal data. Thematic saturation was achieved.
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.
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.
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.
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.
Abstract 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.
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 challenges. Conclusions: 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.
Abstract Objectives This qualitative study describes the experiences of spousal caregivers of a patient with end-stage heart failure (HF) from pre-LVAD to post-LVAD-DT implantation. Background ...LVAD-DTs are implanted as permanent devices for end-stage HF patients with the goal of improving the length and quality of life. LVADs create new demands for both patients and caregivers. Methods In-depth, semi-structured interviews of 10 spousal caregivers were thematically analyzed. Results Throughout the process of caregiving, pre-implant through post-implant, all caregivers discussed their ability to adapt within the role as a caregiver. Adaptation as a caregiver occurred through three distinct time frames following the progression of the patient's HF and subsequent LVAD implantation: caring for a spouse with HF, decision for LVAD implantation made, and caring for a spouse with the LVAD-DT. Conclusions Caregivers were able to adapt and develop effective strategies to incorporate the demands of caring for a spouse with an LVAD-DT, but the role remained challenging. The findings underscore the need for continued research that may be translated into effective interventions to support patient and caregivers as they live through this end-of-life trajectory.
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.
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.
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