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Home health aides (HHAs) care for patients highly vulnerable to COVID-19 and are disproportionately women from minority communities that have been adversely impacted by COVID-19. Yet, direct care workers are less likely to be vaccinated against COVID-19 compared to others. As the pandemic evolves, interest in vaccination may decrease suggesting the need for relevant vaccine messaging to HHAs. Objectives: (1) to describe HHAs and administrators' perspectives related to COVID-19 vaccination messaging, and (2) to co-design a Communication Toolkit to create COVID-19 vaccine messages. Methods: HHAs and administrators from 4 geographically diverse Palliative Care Research Cooperative (PCRC) hospice agencies were recruited for a multi-method process involving qualitative interviews (17 HHAs and 5 administrators), community engagement (CE) studios, and development of a Communication Toolkit. Interviews were guided by the PEN-3 conceptual framework to explore barriers and facilitators to vaccination. Data were analyzed using qualitative content analysis. Results: Despite power differences, HHAs and administrators share a commitment to protecting patients affected by serious illness. HHAs desire vaccine messaging that includes personal narratives, good news about the vaccine, and facts about benefits and risks of the vaccine. Preferred message formats include the agency intranet, daily briefings, or "little seeds" (ie, short, high-impact information). Through the studios, HHAs provided input on a Toolkit prototype with messages tailored to the context of home care. Conclusions: Grounded in the commitment of HHAs and administrators to protecting vulnerable patients, we co-created an adaptable Communication Toolkit to address COVID-19 vaccination misinformation and mistrust among direct care workers. [ABSTRACT FROM AUTHOR]

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms. [ABSTRACT FROM AUTHOR]

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]

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well. [ABSTRACT FROM AUTHOR]

An emerging body literature exists highlighting the use of Digital Storytelling as an educational, and/or therapeutic intervention. Authors of this manuscript have studied Digital Storytelling as a narrative bereavement intervention designed to help individuals make meaning of adverse life events, like the death of a family member. Until recently, Digital Storytelling is typically delivered in person. The purpose of this article is to describe the steps to implementing Digital Storytelling as a bereavement intervention in a completely virtual setting, using Zoom technology. Best practices and lessons learned for the virtual delivery of Digital Storytelling are provided. [ABSTRACT FROM AUTHOR]

Background: Hospice is intended to promote the comfort and quality of life of dying patients and their families. When patients are discharged from hospice prior to death (ie, experience a "live discharge"), care continuity is disrupted. This systematic review summarizes the growing body of evidence on live discharge among hospice patients with Alzheimer's Disease and related dementias (ADRD), a clinical subpopulation that disproportionately experiences this often burdensome care transition. Methods: Researchers conducted a systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Reviewers searched AgeLine, APA PsycINFO (Ovid), CINAHL Plus with Full Text, ProQuest Dissertations & Theses Global, PubMed, Scopus, and Web of Science (Core Collection). Reviewers extracted data and synthesized findings from 9 records, which reported findings from 10 individual studies. Results: The reviewed studies, which were generally of high quality, consistently identified diagnosis of ADRD as a risk factor for live discharge from hospice. The relationship between race and live hospice discharge was less clear and likely dependent upon the type of discharge under investigation and other (eg, systemic-level) factors. Research on patient and family experiences underscored the extent to which live hospice discharge can be distressing, confusing, and associated with numerous losses. Conclusion: Research specific to live discharge among ADRD patients and their families is limited. Synthesis across included studies points to the importance for future research to differentiate between types of live discharge—revocation vsversus decertification—as these are vastly different experiences in choice and circumstances. [ABSTRACT FROM AUTHOR]

Dissemination and implementation of evidence-based interventions is best accomplished with input from stakeholders. This project used a Discrete Choice Experiment to determine the preferences of a nationwide sample of hospice social workers toward the most preferred way to scale the delivery of an online support group. While the majority of social workers preferred referring caregivers to online support groups facilitated outside their agency rather than to facilitate groups themselves, the results were not statistically significant. Social workers reported concerns with both options. Further work with stakeholders is needed to develop implementation strategies and determine the feasibility of both options. [ABSTRACT FROM AUTHOR]

Objective: Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers. Methods: Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. Results: Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. Conclusions: Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider. [ABSTRACT FROM AUTHOR]

Family caregivers of people with cancer encounter a wide range of problems including challenges managing patients' symptoms, difficulties navigating complex healthcare systems, and financial stressors associated with caregiving. Outpatient palliative care teams are ideally positioned to help caregivers respond to these challenges; however, little evidence is available to inform problem-solving support for caregivers in this setting. This article presents results from a secondary analysis of data obtained as part of a randomized clinical trial of a problem-solving intervention for family caregivers of people with cancer receiving outpatient palliative care. It describes the extent to which caregivers report adoption of positive and negative problem orientations and use of rational, impulsive, and avoidant problem-solving styles, and examines whether these problem-solving dimensions differ by age and gender. Results reveal statistically significant negative correlations between caregiver age and positive and negative problem orientations and use of a rational problem-solving style, and statistically significant gender differences with regard to negative problem orientation and use of an impulsive problem-solving style. Findings from this exploratory study highlight unique potential strengths and needs of caregivers, and set the stage for future research on problem-solving among cancer caregivers in the growing field of outpatient palliative care. [ABSTRACT FROM AUTHOR]