Background Delivering care that is responsive to who or what is most important to patients and family caregivers is a key aspect of quality care, yet it remains unclear how clinicians can best support individuals in expressing their personal values. We aimed to describe patient- and family caregiver-identified facilitators and barriers to engaging in values discussions with clinicians following implantation of a left ventricular assist device (LVAD). Methods and results Using a qualitative descriptive approach, patients with an LVAD and their caregivers participated in one-on-one semi structured interviews and self-reported sociodemographics (January 2023-July 2023).
View Article and Find Full Text PDFBackground: Intentional exploration, or elicitation, of patient and family values-who/what matters most-is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation.
Objective: The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period.
Background: Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period.
Methods: Qualitative descriptive study of LVAD recipients.
Importance: Following treatment, breast cancer survivors face challenges participating in valued activities.
Objective: To determine whether a telephone-based coaching rehabilitation intervention enhances activity participation in the year following breast cancer treatment.
Design, Setting, And Participants: In this multisite, single-blind randomized clinical trial (Optimizing Functional Recovery of Breast Cancer Survivors), recruitment occurred between August 28, 2019, and April 30, 2022.
The purpose of the present study was to conduct a process evaluation of intervention delivery for a randomized controlled trial (RCT) conducted during the COVID-19 pandemic (NCT03915548). The RCT tested the effects of a telephone-delivered behavioral intervention on changes in breast cancer survivors' satisfaction with social roles and activities, as compared to an attention control condition. This process evaluation examined (a) fidelity monitoring scores; (b) participants' perceived benefit ratings for gaining confidence, reducing distress, adjusting habits and routines, setting goals, and increasing exercise; and (c) field notes, email communications, and transcripts of coach supervision and debriefing sessions.
View Article and Find Full Text PDFPurpose: Values are critical to how individuals make decisions and cope, yet the values of heart failure (HF) patients and their family caregivers (FCGs) remain understudied. We sought to report the state of the science on how values are discussed, reflected upon, and acted on by patients with HF, their FCGs, or both related to health-related decision making and coping.
Method: A scoping review was conducted of empirical studies using the following keywords: "heart failure," "values," "decision-making," and "coping.
Context: Despite documented racial and ethnic disparities in care, there is significant variability in representation, reporting, and analysis of race and ethnic groups in the hospice and palliative medicine (HPM) literature.
Objectives: To evaluate the race and ethnic diversity of study participants and the reporting of race and ethnicity data in HPM research.
Methods: Adult patient and/or caregiver-centered research conducted in the U.
Cancer
March 2022
Importance: National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations.
Objective: To determine the effect of an early palliative care telehealth intervention over 16 weeks on the quality of life, mood, global health, pain, and resource use of patients with advanced heart failure.
Design, Setting, And Participants: A single-blind, intervention vs usual care randomized clinical trial was conducted from October 1, 2015, to May 31, 2019, among 415 patients 50 years or older with New York Heart Association class III or IV heart failure or American College of Cardiology stage C or D heart failure at a large Southeastern US academic tertiary medical center and a Veterans Affairs medical center serving high proportions of rural dwellers and African American individuals.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life.
Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.
Design, Setting, And Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care.
Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication.
View Article and Find Full Text PDFObjectives: Depression is a leading mental health issue affecting elderly individuals worldwide. Previous research widely neglects caregiver emotional stress as a probable contributing factor of depression in the elderly. This study investigated caregiver emotional stress as a chronic life stressor of an elderly care recipient using the life stress paradigm as the theoretical foundation.
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