A Scoping Review of End-of-Life Discussions and Palliative Care: Implications for Neurological Intensive Care in Latin America and the Caribbean.

Palliative care (PC) is essential to improve quality of life for individuals with life-limiting acute neurological conditions, particularly in resource-limited settings. In Latin America and the Caribbean (LAC), there is limited health care professional training and education on PC. We reviewed the peer-reviewed literature discussing end-of-life care, withdrawal of life-sustaining treatments (WOLST), and PC in the acute inpatient setting.

A scoping review of end-of-life discussions and palliative care: implications for neurological intensive care among Latinos in the U.S.

Goals of care (Goals-of-care) discussions and palliative care (PC) are crucial to providing comprehensive healthcare, particularly for acute neurological conditions requiring admission to a neurological intensive care unit. We identified gaps in the literature and describe insight for future research on end-of-life discussions and PC for U.S.

Understanding the home hospice experience of Puerto Rican caregivers.

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes.

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.

Social support network factors associated with verbal fluency among vulnerable persons living with HIV.

Vulnerable persons living with HIV (PLWH) are at high risk of cognitive impairment and challenges accessing quality social support in later life. Impaired verbal fluency (VF), a cognitive domain linked to HIV, could impede social support associated with health and well-being for already vulnerable PLWH. We examined the structure of social support, using latent class analysis, and the associations among quantity, specific forms and quality of social support and VF among PLWH.

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

Context: Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment.

Objectives: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care.

Advance Care Planning for Spanish-Language Speakers: Patient, Family, and Interpreter Perspectives.

Language access barriers for individuals with limited-English proficiency are a challenge to advance care planning (ACP). Whether Spanish-language translations of ACP resources are broadly acceptable by US Spanish-language speakers from diverse countries is unclear. This ethnographic qualitative study ascertained challenges and facilitators to ACP with respect to Spanish-language translation of ACP resources.

Advance Care Planning in Serious Illness: A Narrative Review.

Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility.

Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness.

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.

Hospice Family Caregiver Perceptions of Benefits and Challenges of a Telenovela Educational Intervention.

Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. HFCGs from two hospices in the Mid-Atlantic region of the United States.

Family Conflict Non-negotiation and HIV Disclosure Associated With ART Adherence in a Disadvantaged Population.

Adherence to antiretroviral therapy (ART) is vital for reducing racial and gender disparities in morbidity and mortality among people living with HIV/AIDS (PLWH). Little research attention has been given to aspects of family functioning affecting ART adherence among PLWH vulnerable to disparities. Data were from n = 313 participants (93% African American) in the BEACON study, which recruited injection-drug-using PLWH on ART.

Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients.

Juntos: A Model for Language Congruent Care to Better Serve Spanish-Speaking Patients with COVID-19.

Coronavirus disease 2019 (COVID-19) exacerbated pre-existing health disparities and disproportionately affected the Latino community. Clinicians identified communication barriers as a major challenge in care for COVID-19 Latino patients with limited English proficiency (LEP). To address these challenges, Juntos (Together) consult service was established to promote language-congruent care with cultural sensitivity, identify barriers to safe discharge, and facilitate referral to appropriate resources.

Caregiver role strain in caring for vulnerable persons living with HIV: correlates of caregiver and care recipient reports.

Informal care of family and friends is important for the health and well-being of disadvantaged persons living with HIV (PLWH). Caregiver role strain may threaten the function and continuity of their main relationships and their health impacts. Data were from a disadvantaged, primarily African American, sample of PLWH care recipients.

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education.

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG.

Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group.

Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos.

Quality of Life Among Caregivers of a Vulnerable Population Living with HIV: Caregiving and Relationship Factors.

Literature on health-related quality of life (HRQOL) has focused on people living with chronic conditions, with less attention given to HRQOL among informal caregivers. We used cross-sectional dyadic data from both care recipients (CR) living with HIV and the person they identified as their primary informal (unpaid) caregiver (CG) to identify psychosocial and caregiving relationship factors (including, CG role ambivalence and caregiving-related stress) associated with CG HRQOL. We conducted confirmatory factor analysis and structural equation modeling testing.

Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela.

Objective: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs.

Methods: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states.

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review.

Objective: The purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2.

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.

To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer. Secondary qualitative data analysis. 58 family caregivers of hospice patients with advanced cancer.

Support Network Factors Associated With Naming a Health Care Decision-Maker and Talking About Advance Care Planning Among People Living With HIV.

Context: Little attention has been given to social environmental factors associated with advance care planning (ACP) among African Americans or people living with advanced HIV (PLHIV).

Objectives: The present study aimed to identify support network factors that affect the likelihood of naming a decision-maker and of talking to family/friends and doctors about ACP among vulnerable PLHIV.

Methods: PLHIV were recruited from a large urban HIV clinic.

Adherence to Measuring What Matters: Description of an Inpatient Palliative Care Service of an Urban Teaching Hospital.

Background: Benefits of palliative care have been extensively described; however, reports on adherence to national quality indicators are limited.

Objectives: This study focuses on describing the characteristics of patients who were seen at an urban academic hospital and their care team's adherence to 5 out of 10 Measuring What Matters (MWM) quality indicators.

Design: Retrospective chart review Setting/Subjects: Patients seen by inpatient palliative care service from January 2014 to December 2015 in an urban academic hospital.

Connecting Personal Experiences of Loss and Professional Practices in Advance Care Planning and End-of-Life Care: A Survey of Providers.

Background: Although practitioners overwhelmingly agree on the importance of advance care planning (ACP) and preparing for the end of life (EOL), the process is fraught with barriers.

Objective: The goal of this research was to explore potential connections between providers' own personal experiences and current professional practices in ACP and EOL care.

Design: A cross-sectional survey design, gathering voluntary, anonymous responses from participants between August and December 2016.