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Abstract 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.

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 (NCT 03915548). 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. The behavioral and attention control conditions were delivered with a high degree of fidelity (global quality rating score for the BA/PS condition was M = 4.6 (SD = 0.6) and M = 4.9 (SD = 0.3) for the attention control condition, where “5” is the highest rating). The behavioral intervention participants perceived greater benefits than the control participants pertaining to goal setting, t(248) = 5.73, p = t(248) = 2.94, p = 0.0036, and increasing exercise, t(248) = 4.66, p =

Abstract Background Family caregivers play a vital, yet stressful role in managing the healthcare needs and optimizing the quality of life of patients with advanced cancer, from the time they are newly diagnosed until end of life. While early telehealth palliative care has been found to effectively support family caregivers, little work has focused on historically under-resourced populations, particularly African American and rural-dwelling individuals. To address this need, we developed and are currently testing Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African American and rural-dwelling patients with newly diagnosed advanced cancer. Methods This is a 2-site, single-blind, hybrid type I implementation-effectiveness trial of the Cornerstone intervention versus usual care. Cornerstone is a multicomponent intervention based on Pearlin’s Stress-Health Process Model where African American and/or rural-dwelling family caregivers of patients with newly diagnosed advanced cancer (target sample size = 294 dyads) are paired with a lay navigator coach and receive a series of six, brief 20–60-min telehealth sessions focused on stress management and coping, caregiving skills, getting help, self-care, and preparing for the future/advance care planning. Subsequent to core sessions, caregivers receive monthly follow-up indefinitely until the patient’s death. Caregiver and patient outcomes are collected at baseline and every 12 weeks until the patient’s death (primary outcome: caregiver distress at 24 weeks; secondary outcomes: caregiver: quality of life and burden; patient: distress, quality of life, and healthcare utilization). Implementation costs and the intervention cost effectiveness are also being evaluated. Discussion Should this intervention demonstrate efficacy, it would yield an implementation-ready model of early palliative care support for under-resourced family caregivers. A key design principle that has centrally informed the Cornerstone intervention is that every caregiving situation is unique and each caregiver faces distinct challenges that cannot be addressed using a one-size-fits all approach. Hence, Cornerstone employs culturally savvy lay navigator coaches who are trained to establish a strong, therapeutic alliance with participants and tailor their coaching to a diverse range of individual circumstances. Trial registration ClinicalTrials.gov NCT04318886 . Registered on 20 March, 2020.

Background: Due to the progressive deterioration of motor, cognitive, and psychological function, individuals with Huntington's disease (HD) rely heavily on family caregivers, including children in the home. This "young carer" role can result in responsibilities that are inappropriate for the child's age and abilities. Also referred to as parentification, this experience can result in both positive and negative outcomes for the child, spanning multiple domains of health and well-being. Objective: To explore the manifestation of parentification among young carers of a parent with HD. Method: Directed content analysis, guided by a literature-derived framework of parentification, was utilized for this qualitative study. Participants included 28 young carers (mean age of 16.6 (± 2.6)) who self-identified as engaging in caregiving activities related to HD with the majority providing care for 1-3 years (53.6%)--averaging 25.4 h of care per week. Results: Three main themes with subthemes emerged--(1) being a young carer [perceptions of caregiving, learning to be a caregiver, caregiver burden, coping], (2) living with a new normal (school and friends, feeling unheard/alone, support system, personal growth), and (3) facing HD as a young carer (stigma and isolation, parent/child relationship, end of life, genetic risk). Conclusions: Young carers in the context of HD experience many attributes and consequences of parentification generally present among young carers of ill parents. However, HD specific findings emerged from this study that can be used to inform clinicians and direct future research aimed at guiding policy and developing tailored support services.

Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support. Keywords: Family caregivers, Advanced cancer, Telehealth, Palliative care, Rural

Abstract Background Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov . NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

The field of palliative care is growing in acceptance and sophistication globally. No longer considered just for patients at end-of-life, palliative care is now being incorporated early in the disease trajectory. Despite professional guidelines supporting early palliative care, there are few models that have been created that can be translated into practice cross-culturally. In the United States, the Educate, Nurture, Advise, Before, Life Ends (ENABLE) early palliative care telehealth model has demonstrated effectiveness in improving quality of life, mood, symptom relief, and survival for patients with cancer and is now being tested in patients with heart failure. Family caregivers of patients who have received ENABLE concurrent with their care recipients have also demonstrated positive outcomes in quality of life and caregiver burden. Internationally, a number of investigators are culturally adapting ENABLE for patients and family caregivers. While some elements of ENABLE, such as symptom management and self-care, and the caregiving role are relevant cross-culturally, others have been built on Western principles of self-determination or represent concepts such as advance care planning which will require more cultural adaptation. In addition, ENABLE was initially an in-person approach that was converted to telehealth to accommodate a rural population-it will be important to understand cultural norms related to receiving care by phone or if an in-person approach will be more culturally acceptable. This paper describes efforts in Turkey and Singapore to culturally adapt the ENABLE early palliative care principles for their countries.

As the global cancer burden grows, so too will global inequities in access to cancer and palliative care increase. This paper will describe the cancer and palliative care landscape relative to nursing practice, education, and research, and emerging global collaborations in the United States (U.S.), Turkey, and Malawi. It is imperative that nurses lead efforts to advance health and strengthen education in these high-need areas. Leaders within the University of Alabama at Birmingham School of Nursing, through a Pan American Health Organization/World Health Organization Nursing Collaborating Center, have initiated collaborative projects in cancer and palliative care between the U.S., Turkey, and Malawi to strengthen initiatives that can ultimately transform practice. These collaborations will lay a foundation to empower nurses to lead efforts to reduce the global inequities for those with cancer and other serious and life-limiting illnesses.

AimsNumerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.MethodsQualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.FindingsCaregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.ConclusionsThese findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Objective: The objective of this study was to assess the feasibility of conducting a future full-scale trial to test the efficacy of an in-home occupational therapy intervention designed to reduce disability in older adult cancer survivors., Method: Participants reporting activity limitations during or after cancer treatment were enrolled in a Phase 1 pilot randomized controlled trial comparing the 6-wk intervention (n = 30) to usual care (n = 29). Descriptive data on retention rates were collected to assess feasibility of intervention and study procedures. Potential efficacy was explored through participants' self-reported disability, quality of life, activity level, and behavioral activation at 0, 8, and 16 wk after enrollment., Results: Retention rates were high regarding completion of the intervention (90%) and outcome assessments (90% of usual-care participants and 80% of intervention participants). Outcomes consistently favored the intervention group, although group differences were small., Conclusion: The procedures were feasible to implement and acceptable to participants., (Copyright © 2019 by the American Occupational Therapy Association, Inc.)

Purpose: To determine the effect of early versus delayed initiation of a palliative care intervention for family caregivers (CGs) of patients with advanced cancer., Patients and Methods: Between October 2010 and March 2013, CGs of patients with advanced cancer were randomly assigned to receive three structured weekly telephone coaching sessions, monthly follow-up, and a bereavement call either early after enrollment or 3 months later. CGs of patients with advanced cancer were recruited from a National Cancer Institute cancer center, a Veterans Administration Medical Center, and two community outreach clinics. Outcomes were quality of life (QOL), depression, and burden (objective, stress, and demand)., Results: A total of 122 CGs (early, n = 61; delayed, n = 61) of 207 patients participated; average age was 60 years, and most were female (78.7%) and white (92.6%). Between-group differences in depression scores from enrollment to 3 months (before delayed group started intervention) favored the early group (mean difference, -3.4; SE, 1.5; d = -.32; P = .02). There were no differences in QOL (mean difference, -2; SE, 2.3; d = -.13; P = .39) or burden (objective: mean difference, 0.3; SE, .7; d = .09; P = .64; stress: mean difference, -.5; SE, .5; d = -.2; P = .29; demand: mean difference, 0; SE, .7; d = -.01; P = .97). In decedents' CGs, a terminal decline analysis indicated between-group differences favoring the early group for depression (mean difference, -3.8; SE, 1.5; d = -.39; P = .02) and stress burden (mean difference, -1.1; SE, .4; d = -.44; P = .01) but not for QOL (mean difference, -4.9; SE, 2.6; d = -.3; P = .07), objective burden (mean difference, -.6; SE, .6; d = -.18; P = .27), or demand burden (mean difference, -.7; SE, .6; d = -.23; P = .22)., Conclusion: Early-group CGs had lower depression scores at 3 months and lower depression and stress burden in the terminal decline analysis. Palliative care for CGs should be initiated as early as possible to maximize benefits., (© 2015 by American Society of Clinical Oncology.)

Purpose: Randomized controlled trials have supported integrated oncology and palliative care (PC); however, optimal timing has not been evaluated. We investigated the effect of early versus delayed PC on quality of life (QOL), symptom impact, mood, 1-year survival, and resource use., Patients and Methods: Between October 2010 and March 2013, 207 patients with advanced cancer at a National Cancer Institute cancer center, a Veterans Affairs Medical Center, and community outreach clinics were randomly assigned to receive an in-person PC consultation, structured PC telehealth nurse coaching sessions (once per week for six sessions), and monthly follow-up either early after enrollment or 3 months later. Outcomes were QOL, symptom impact, mood, 1-year survival, and resource use (hospital/intensive care unit days, emergency room visits, chemotherapy in last 14 days, and death location)., Results: Overall patient-reported outcomes were not statistically significant after enrollment (QOL, P = .34; symptom impact, P = .09; mood, P = .33) or before death (QOL, P = .73; symptom impact, P = .30; mood, P = .82). Kaplan-Meier 1-year survival rates were 63% in the early group and 48% in the delayed group (difference, 15%; P = .038). Relative rates of early to delayed decedents' resource use were similar for hospital days (0.73; 95% CI, 0.41 to 1.27; P = .26), intensive care unit days (0.68; 95% CI, 0.23 to 2.02; P = .49), emergency room visits (0.73; 95% CI, 0.45 to 1.19; P = .21), chemotherapy in last 14 days (1.57; 95% CI, 0.37 to 6.7; P = .27), and home death (27 [54%] v 28 [47%]; P = .60)., Conclusion: Early-entry participants' patient-reported outcomes and resource use were not statistically different; however, their survival 1-year after enrollment was improved compared with those who began 3 months later. Understanding the complex mechanisms whereby PC may improve survival remains an important research priority., (© 2015 by American Society of Clinical Oncology.)