Sights and Sounds of Respiratory Changes During Hospice Death Vigils: Hospice Caregivers Experience.

Context: Research has documented common respiratory changes at the end of life for hospice patients. Some studies have noted these symptoms as distressing and challenging for families, and as a potential reason for emergency room visits and hospice benefit revocation. However, the experiences and emotions of family members regarding these respiratory changes in the final days, particularly when they are alone in a home setting, are not well documented.

Family caregiver narratives of hospice death vigils.

Background: Often, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore the stories and experiences of family caregivers of hospice patients who participated in death vigils.

Methods: Qualitative analysis of interviews with 50 hospice family caregivers explored the experiences and memories affiliated with death vigils.

The Secrets of the Backstage: Directing Death Vigils.

The majority of hospice patients are over the age of 65, and the majority of hospice deaths occur in private homes. As a hospice patient's disease progresses, death becomes imminent and family and friends gather around to say good-bye. These private vigils are the culmination of the hospice experience and reflect both the strengths and the challenges surrounding hospice care.

Exploring Social Support Experiences of Caregivers of Persons Living With Dementia in Hospice Care.

As the number of persons living with dementia (PLWD) enrolling in hospice care rises, caregiver support becomes increasingly crucial. While social support can help buffer caregiver stress, many caregivers report feeling isolated and having unmet needs, highlighting the limited research on this population. This qualitative descriptive study aimed to better understand caregivers' social support during the period when the PLWD is enrolled in hospice care.

Addressing Statistical Power and Increasing Diversity in Hospice Research: Electronic Medical Record Participant Identification Compared to Nurse Referral Approaches to Recruitment.

Context: Recruitment of targeted samples into hospice clinical trials is often challenging. While electronic medical records (EMR) are commonly used in hospital-based research, it is uncommon in hospice research. The community setting and the variability in hospices and their medical record creates unique challenges.

Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Background: Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers.

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients.

Background: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health.

Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

Purpose: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships.

Methods: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

Background: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience.

Objective: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application.

Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.

Background: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist.

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

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. To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

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? This was a secondary analysis of data collected in a cluster randomized controlled trial.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

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 , 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 .

When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common.

Advanced Care Planning for Hospitalized Patients Following Clinician Notification of Patient Mortality by a Machine Learning Algorithm.

Importance: Goal-concordant care is an ongoing challenge in hospital settings. Identification of high mortality risk within 30 days may call attention to the need to have serious illness conversations, including the documentation of patient goals of care.

Objective: To examine goals of care discussions (GOCDs) in a community hospital setting with patients identified as having a high risk of mortality by a machine learning mortality prediction algorithm.

Access for Cancer Caregivers to Education and Support for Shared Decision Making (ACCESS) intervention: a cluster cross-over randomised clinical trial.

Objectives: The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

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 care-recipients 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.

Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.

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.

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects.

Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status.

Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types.

Background: Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences.

Objectives: This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

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.

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers.

Background: Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for tele), an intervention for hospice family caregivers (HFCG).

Methods: Statistics were kept of every referral, consenting participant, visit session, and intervention activity.

Older Adult Engagement With Facebook Interventions: A Challenge for Nursing Research.

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.

Reliability and Validity Testing of the Caregiver-Centered Communication Questionnaire.

The purpose of this study is to test the reliability and construct validity of a new instrument, the Caregiver-Centered Communication Questionnaire (CCCQ), designed to assess the extent to which family caregivers feel their perspectives and needs are appropriately acknowledged and addressed by the healthcare team. We administered the CCCQ to adult family caregivers of hospice patients. We calculated Cronbach's alpha and performed structural equation modeling.