Rachel Wells

Background: African American and rural-dwelling family caregivers of patients with advanced cancer may face structural, geographic, transportation, and access barriers to supportive care. Evidence is limited regarding the long-term effects of early palliative care interventions designed for these populations. Methods: We examined 36-week and 48-week outcome data from 222 caregivers and 165 patients who participated in a single-blind, multisite randomized clinical trial (intervention vs usual care) of a lay-coach-led, caregiver-focused early palliative care intervention ENABLE Cornerstone (January 2020-November 2025). Caregiver and patient anxiety and depressive symptoms (Hospital Anxiety and Depression Scale [HADS]), quality of life (QOL) (PROMIS Global Health 10), and caregiver burden (Montgomery-Borgatta Caregiver Burden scales [MBCB]) at 36 and 48 weeks were examined using baseline-constrained linear mixed-effects models with participant and intervention-coach random effects. Results: Intervention caregivers reported lower demand burden compared with usual care at 36 weeks (mean [SE] difference = −1.54 [0.52]; Cohen’s d = −0.41 [95% CI = −0.68 to −0.13]; adjusted P = .03). Intervention patients demonstrated significantly lower depressive symptoms at 36 weeks (mean [SE] difference = −1.53 [0.61]; Cohen’s d = −0.38 [95% CI = −0.67 to −0.08]; adjusted P = .048) and better physical quality of life at 48 weeks (mean [SE] difference = 3.93 [1.38]; Cohen’s d = 0.46 [95% CI = 0.14 to 0.78]; adjusted P = .02). Conclusions: This caregiver-focused early palliative care intervention produced significant long-term patient benefits in a trial enrolling African American and rural-dwelling caregivers, including lower patient depressive symptoms and better physical QOL. Caregiver effects were more limited, although demand burden improved. These findings support scalable caregiver-focused palliative care strategies for populations facing barriers to specialty supportive care. ClinicalTrials.gov identifier: NCT04318886

Family caregivers of adults diagnosed with cancer usually face significant financial hardship due to employment disruptions and the cost of cancer-related

Background: Providing care aligned with patient values is key to high-quality cardiovascular care. However, it is unclear how recipients of a ventricular assist device (VAD) engage in values-centered discussions during the postimplantation period. Objective: To understand how recipients of a VAD engage in conversations focused on clarifying what matters most. Methods: Sequential explanatory mixed methods study. Adult recipients of a VAD were recruited from a Southeastern U.S. outpatient clinic. Participants completed a cross-sectional survey characterizing values discussions (with whom, who is present, timing, frequency, location, feelings). A subset completed a semi-structured interview to provide a richer understanding of survey findings. Results: Survey respondents (response rate 31%; N = 32) were 37 to 77 years, mostly male (59%) and non-Hispanic Black (53%). Qualitative analysis (n = 12) identified 3 themes: (1) Relational trust and emotional safety, (2) Timing and readiness, and (3) Contextual fit and communication environment. Synthesis of findings revealed congruence between survey and interview data. Patients indicated comfort with trusted, approachable individuals who were willing/able to offer support (with whom/who is present); acceptance and clarity about their new reality/identity (timing), trusting relationships built over time (frequency), and in-person interactions (location) were key; negative experiences emerged from frustration, conflict, negative attitudes, and lack of understanding (feelings). Conclusions: Findings highlight the importance of relational trust, emotional readiness, and a supportive communication environment in facilitating values-centered discussions and offer practical guidance for nurses to foster meaningful, values-centered discussions by prioritizing continuity, accessibility, and emotional safety in their interactions.

Background: 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. Methods: This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. Results: Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. Conclusions: Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.

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. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. Results: Interviewed patients (n = 27) were 30–76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients’ values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. Conclusions: Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping.