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Background: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. Objective: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. Methods: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. Results: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. Conclusion: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants. [ABSTRACT FROM AUTHOR]

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for carerecipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs. [ABSTRACT FROM AUTHOR]

Background: Poor sleep exacerbates mental health problems and reduces quality-of-life (QOL) but prevalence of insomnia symptoms among hospice family caregivers and associations of poor sleep with caregiver health and QOL outcomes are not known. Objective: To describe prevalence of insomnia symptoms among hospice family caregivers and compare anxiety, depression, self-rated health, QOL, and caregiver burden between hospice family caregivers with and without insomnia symptoms. Methods: Descriptive sub-study using data collected during baseline interviews of hospice family caregivers involved in a randomized clinical trial in Midwestern United States (xxxxxxxx). Caregivers were dichotomized based on Insomnia Severity Index (ISI) scores (8+ indicated insomnia symptoms). Results: Among 57 hospice family caregivers, the mean ISI score was 8.2; nearly half (49.1%) experienced insomnia symptoms. Compared to caregivers without insomnia symptoms, caregivers with insomnia symptoms reported 2.4 times greater mean anxiety scores (4.7 vs 11.4); 3.5 times greater mean depression scores (3.1 vs 10.7); 2.1 times greater caregiver burden scores (5.6 vs 11.8); and 1.3 times lower self-rated health (3.5 vs 2.8); 1.3 times lower total QOL scores (29.3 vs 22.6); including differences in emotional QOL (7.9 vs 2.2), social QOL (7.2 vs 3.0), and physical QOL (7.4 vs 5.3). Conclusions: Hospice family caregivers experience high prevalence of insomnia symptoms; caregivers with insomnia symptoms report worse anxiety, depression, caregiver burden, QOL, self-rated health. Clinicians must screen hospice caregivers for poor sleep and mental health and offer supportive interventions that improve their sleep and health. Policy makers must expand hospice benefits to better support family caregivers. [ABSTRACT FROM AUTHOR]

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10–17.] [ABSTRACT FROM AUTHOR]

Background: Despite the end of caregiving responsibilities, caregivers' depressive symptoms continue following the death of the care recipient with Alzheimer's disease or a related dementia (ADRD). However, long-term patterns of depressive symptoms among ADRD caregivers following the care recipient's death remain poorly understood. Purpose: To explore longitudinal trajectories and correlates of depressive symptoms in former caregivers of persons with ADRD following the care recipient's death. Methods: Using the modification of Cooper's framework presented by Whittemore and Knafl, an integrative review was conducted in 4 stages: problem identification, literature search, data evaluation, and data analysis. The literature search was performed using CINAHL, PubMed, and PsycINFO databases. Articles were included if they were published in English between January 1994 and March 2021, reported in peer-reviewed sources, and described findings of original research related to factors, correlates, or longitudinal patterns of depressive symptoms in former family caregivers following the death of the care recipient with ADRD. Results: Longitudinal trajectories of depressive symptoms were categorized into 3 overarching themes: (1) gradual reduction of depressive symptoms during the first year post-caregiving; (2) failure of depressive symptoms to fully resolve after the first year post-caregiving; and (3) individualized depressive symptom trajectories. Correlates of post-caregiving depressive symptoms were categorized into 3 themes: (1) caregiver personal characteristics; (2) extrinsic factors; and (3) coping resources. Conclusion: These findings indicated that screening for depression and psychosocial support are high priorities during the first year post-caregiving to facilitate early identification of at-risk caregivers and improve mental health outcomes in this population. [ABSTRACT FROM AUTHOR]

Background: Palliative care consultation to discuss goals-of-care ("PCC") may mitigate end-of-life care disparities. Objective: To compare hospitalization and cost outcomes by race and ethnicity among PCC patients; identify predictors of hospice discharge and post-discharge hospitalization utilization and costs. Methods: This secondary analysis of a retrospective cohort study assessed hospice discharge, do-not-resuscitate status, 30-day readmissions, days hospitalized, ICU care, any hospitalization cost, and total costs for hospitalization with PCC and hospitalization(s) post-discharge among 1,306 Black/African American, Latinx, White, and Other race PCC patients at a United States academic hospital. Results: In adjusted analyses, hospice enrollment was less likely with Medicaid (AOR = 0.59, P = 0.02). Thirty-day readmission was less likely among age 75+ (AOR = 0.43, P = 0.02); more likely with Medicaid (AOR = 2.02, P = 0.004), 30-day prior admission (AOR = 2.42, P < 0.0001), and Black/African American race (AOR = 1.57, P = 0.02). Future days hospitalized was greater with Medicaid (Coefficient = 4.49, P = 0.001), 30-day prior admission (Coefficient = 2.08, P = 0.02), and Black/African American race (Coefficient = 2.16, P = 0.01). Any future hospitalization cost was less likely among patients ages 65-74 and 75+ (AOR = 0.54, P = 0.02; AOR = 0.53, P = 0.02); more likely with Medicaid (AOR = 1.67, P = 0.01), 30-day prior admission (AOR = 1.81, P = 0.0001), and Black/African American race (AOR = 1.40, P = 0.02). Total future hospitalization costs were lower for females (Coefficient = −3616.64, P = 0.03); greater with Medicaid (Coefficient = 7388.43, P = 0.01), 30-day prior admission (Coefficient = 3868.07, P = 0.04), and Black/African American race (Coefficient = 3856.90, P = 0.04). Do-not-resuscitate documentation (48%) differed by race. Conclusions: Among PCC patients, Black/African American race and social determinants of health were risk factors for future hospitalization utilization and costs. Medicaid use predicted hospice discharge. Social support interventions are needed to reduce future hospitalization disparities. [ABSTRACT FROM AUTHOR]

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index–Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027. [ABSTRACT FROM AUTHOR]

Background: National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory. Objective: To describe cancer patients' concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites. Methods: A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis. Results: Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity). Conclusions: The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients' capacity toward a more patient-centered treatment and care experience. [ABSTRACT FROM AUTHOR]