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

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Palliative Care: An Update.

Population across the globe is not only aging but also suffering from serious illness. This is critically important in providing patient-centered end of life (EOL) care. The following article intends to describe what are the principles of palliative care (PC), how PC assists in the care of patients with cancer and serious illness across settings, current delivery of EOL care, and the future of PC with novel models of delivery.

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. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.

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. Latinos with acute neurological conditions. We searched 10 databases including peer-reviewed abstracts and manuscripts of hospitalized U.S. Latinos with acute neurological and non-neurological conditions. We included 44 of 3231 publications and identified various themes: PC utilization, pre-established advanced directives in Goals-of-care discussions, Goals-of-care discussion outcomes, tracheostomy or percutaneous gastrostomy tube placement rates among hospitalized Latinos. Our review highlights that Latinos appear to have lower palliative care utilization compared with non-Latino Whites and may be less likely to have pre-established advanced directives, more likely to have gastrostomy or tracheostomy placement and less likely to have do-not-resuscitate status.

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. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

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. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%). METHODS: This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed. RESULTS: Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%. CONCLUSION: Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

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. We conducted focus groups with a heterogeneous sample of 29 Spanish-speaking persons who had experience with ACP as a patient, family member, and/or medical interpreter. We conducted thematic analysis with axial coding. Themes include: (1). ACP translations are confusing; (2). ACP understanding is affected by country of origin; (3). ACP understanding is affected by local healthcare provider culture and practice; and (4). ACP needs to be normalized into local communities. ACP is both a cultural and clinical practice. Recommendations for increasing ACP uptake extend beyond language translation to acknowledging users' culture of origin and local healthcare culture.

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. METHODS: Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. RESULTS: Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. CONCLUSION: Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

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 telenovela), an intervention for hospice family caregivers (HFCG). METHODS: Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. RESULTS: Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5 minutes (range 8.0-25.7). The main reason for missing a session was a patient's death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers' other demands. CONCLUSION: The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.

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

Background: 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. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).

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 interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care. RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described. CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.

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. RESULTS: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. CONCLUSION: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

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. Spanish speaking volunteer health care providers worked synergistically with medical teams caring for LEP Latino patients. Volunteers were trained on consultant responsibilities and discharge planning resources. The program was evaluated by a satisfaction survey distributed to providers who requested a Juntos consult and Juntos volunteers. Between May 5 and July 30, 2020, 19 individuals volunteered time to the Juntos consult service, 12 (63%) Latinos, 14 (74%) physicians, and 5 (26%) staff. The service supported 127 patients, 76 (60%) males, mean age 42 (±16), 83 (65%) uninsured, and 91 (72%) without primary care. The most common referral sources were medical units (52, 41%) and intensive care units (47, 37%). The most common services offered were family engagement (55, 43%), goals of care (35, 28%), and mental status assessment (26, 20%). The majority of providers who consulted Juntos were very satisfied (48/59, 81%) with the care delivered. The Juntos service offered critical support tailored to the patients' and primary teams' needs. The experience reinforced the need for cultural-based communication to provide optimal care to LEP patients. The Juntos consult service could be a model for providing language-congruent care even beyond COVID-19, but to do so will require institutional investment and rigorous outcomes evaluation.

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. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions? METHODS: The study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines. Researchers systematically searched five databases for experimental and observational studies on the evidence supporting video education for hospice and palliative care patients and caregivers, published in 1969-2019. RESULTS: The review identified 31 relevant articles with moderate-high quality of evidence. Most studies were experimental (74 %), came from the United States (84 %) and had a mean sample size of 139 participants. Studies showed that video interventions positively affect preferences of care and advance care planning, provide emotional support, and serve as decision and information aids. CONCLUSION: A strong body of evidence has emerged for video education interventions in hospice and palliative care. Additional research assessing video interventions' impact on clinical outcomes is needed. PRACTICE IMPLICATIONS: Videos are a promising tool for patient and family education in hospice and palliative care.

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. MEASUREMENTS: Patient age, gender, ethnicity, disease category, discharge end point, life-sustaining preferences, surrogate decision-maker documentation, and initial palliative assessment were analyzed using descriptive, parametric, and nonparametric statistics. RESULTS: During two years, 1272 patients were seen by the inpatient palliative care service. Fifty-one percent of patients were male, with an average age of 68 years. The majority were Caucasian (57%) and African American (41%). Life-limiting illnesses included were cancer, complex chronic illnesses, and gastrointestinal illness. Adherence to comprehensive palliative care assessment was measured at 64%; initial visit assessment for physical symptoms was 38%; code status preference was 99%; care consistent with preference in vulnerable elders was 99%; and surrogate documentation was noted at 33%. Compared to hospital patients discharged without hospice, patients discharged with hospice care had consults with higher adherence to comprehensive assessment and surrogate documentation quality standards (p < 0.05). CONCLUSIONS: Adherence to MWM measures was variable. Subjects discharged with hospice services were more likely to receive comprehensive assessment within 5 days of admission and surrogate documentation compared to those subjects without hospice care.

Chronic Pain, Functional Status, and Life Satisfaction Are Associated With Patients Living With HIV Discussing Advance Care Planning With Their Family or Friends.

CONTEXT: In the era of effective antiretroviral therapy, persons living with HIV/AIDS (PLWHA) are living longer, transforming HIV from a universally fatal disease to a serious chronic illness, warranting discussions between patients and their loved ones about advance care planning (ACP). Evidence is needed on factors associated with patients' likelihood to discuss ACP with loved ones. OBJECTIVES: To further characterize factors associated with successful ACP in PLWHAs with their loved ones, we examined associations between patients having ACP discussions with the need for assistance with personal care, chronic pain, life satisfaction, prior family disagreements over health care decisions, sex, age, and interference in daily routines due to memory problems. METHODS: Data were from the Affirm Care study (N = 370), which examined social and environmental factors associated with health outcomes among PLWHAs and their informal caregivers. RESULTS: Slightly more than half of respondents discussed ACP with loved ones (57%). In adjusted analysis, higher levels of chronic pain (odds ratio [OR] = 2.09, P = 0.045), needing assistance with personal care (OR = 1.63, P = 0.023), greater life satisfaction (OR = 1.02, P = 0.002), prior family arguments over health care decisions (OR = 2.80, P < 0.001), and female sex (OR = 2.22, P = 0.001) were associated with higher odds of discussing ACP with loved ones, whereas age, drug use, education level, depression, and memory problems were nonsignificant. CONCLUSION: These results suggest that interventions to increase ACP among PLWHAs and their loved ones should target males. The findings also suggest PLWHAs with chronic pain, the need for assistance with personal care, and those with a history of prior family arguments over health care decisions may be primed for ACP.

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. A social support network inventory was used to calculate number of persons available for various types of support. Characteristics of network members were also collected. Multivariable logistic regression models were fit to examine associations between social network factors and ACP discussion, adjusting for age, sex, education, and total number of network members. RESULTS: The sample (N = 370) was mostly African American (95%), male (56%), and 48% had less than a high school education. Almost half the sample (48%) had talked to their family/friends or doctor about ACP, and 34% had named a medical decision-maker. Adjusted analysis revealed that talking about ACP with family/friends was associated with female sex and a larger closer support network who provided health information and physical assistance. Talking to doctors about ACP was associated with larger support networks who provided physical assistance but lower numbers from whom emotional support was received. Naming a decision-maker was associated with greater numbers of network members who provided emotional support, health information, and medication adherence reminders. CONCLUSION: The findings revealed aspects of family/support network structures and caregiving function associated with ACP in a population with often vital yet vulnerable networks.

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. The survey sought information from providers in 3 distinct areas: (1) personal experiences of loss, (2) personal ACP, and (3) professional practices related to ACP and EOL care. SETTING/PARTICIPANTS: One hundred and ninety health-care professionals (primarily physicians, nurses, and social workers) participated in the survey across a greater, Metropolitan area in the Midwest. MEASUREMENTS: Questions for professional practices were subscales from the End-of-Life Professional Caregiver Survey: Patient- and Family-Centered Communication (PFCC) and Effective Care Delivery (ECD). Questions developed by the research team were evaluated by judges chosen for clinical and/or research expertise. RESULTS: Numerous connections were found between professionals' histories of loss, personal ACP, and professional practices. For example, both clinicians with personal experience caring for someone who is dying and clinicians who had completed their own ACP scored higher in both PFCC and ECD and were more likely to refer patients to hospice and palliative care. CONCLUSIONS: Results support educational interventions involving opportunities for reflection and completion and communication about ACP. Additionally, educational opportunities for students in health care should focus on incorporating both ACP and greater exposure to hospice and palliative care.

What Did Latino Family Caregivers Expect and Learn From Education Intervention "Caregivers Like Me"?

OBJECTIVE: US Latinos historically have underutilized end-of-life (EOL) resources. This study reports the views of family caregivers before and after education intervention Caregivers Like Me geared to improve knowledge and attitudes regarding EOL resources among Latino caregivers. METHODS: This is a qualitative substudy within a multicentered cross-sectional study design. Educational intervention was offered to family caregivers of Latino elders from 3 different communities, using an audiovisual presentation, including a case-based video telenovela and pre-posttest questionnaires with open-ended questions. This study pertains to the qualitative results for the open-ended questions before and after education intervention. RESULTS: Participants (N = 145) were mostly females (79%) with a mean age of 56 ± 15 years and reported (92%) active learning from intervention. The pretest open-ended question on expected learning identified 2 themes, care for the sick and self-care. It included 5 subthemes and the most common one was how to help the sick. The posttest question on actual learning identified the same 2 themes and 4 subthemes that were similar but different from the pretest. Accepting help and knowledge of services available were the most common. CONCLUSION: The education intervention Caregivers Like Me was able to improve attitudes toward EOL care because participants who wanted to help their loved ones realized that they need to accept professional help and were made aware of the services available.