Dataset Information

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

ABSTRACT: 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.HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality.This study was conducted using a qualitative design with in-depth interviews and content analysis.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.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.

SUBMITTER: Alonso W

PROVIDER: S-EPMC5167641 | biostudies-literature | 2017 Jan - Feb

REPOSITORIES: biostudies-literature

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

Alonso Windy W Hupcey Judith E JE Kitko Lisa L

Heart & lung : the journal of critical care 20161024 1

<h4>Objectives</h4>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.<h4>Background</h4>HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality.<h4>Methods</h4>This study was conducted using a qualitative design with in-depth interviews and content analysis.<h4>Results</h4>Mo ...[more]

PMID: 27788935

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Project description:BACKGROUND:Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. METHODS:This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients' preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. DISCUSSION:The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. TRIAL REGISTRATION:ClinicalTrials.gov NCT04153890, Registered on 4 November 2019.

Dataset Information

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

Publications

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

Similar Datasets

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