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. Participants enrolled in the BEACON study (n = 383) completed the Controlled Oral Word Association test (COWAT) and a social support network inventory. Latent class analysis with count variables was used to determine the number of classes of PLWH based on their social network characteristics. The majority of PLWH were male (61.4%) and African American (85.9%). Two distinct latent classes, with a major distinction in the number of network members who were female, knew participants' HIV status and HIV medication usage. Fewer support network members (ß = -.13, p < 0.01), greater negative interactions (ß = -.16, p < 0.01), and less positive interactions with network members (ß = .15, p < 0.05) were significantly associated with lower COWAT scores. Comprehensive screening of high-risk PLWH and early intervention with those with cognitive impairment are important for addressing social support needs.

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. Caregiver role strain was operationalized as a latent factor measured by variables including PLWH's perceptions of their caregiver not wanting or complaining about helping them or wanting a break. We found that greater caregiver role strain was associated with higher levels of HIV-related stigma and depressive symptoms. Lower role strain was associated with more collaborative problem solving and shared medical treatment decision-making. Caregiver role strain was linked to disadvantaged PLWHs' worse stigma and mental health; collaborative engagement in care and coping assistance were protective of role strain. Caregiving relationship-focused research and interventions are needed for resourcing and sustaining disadvantaged African American communities' caregiving and health.

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. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

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. The results highlight interdependent effects of the CG-CR relationship and reveal pathways whereby relationship interactions positively and negatively impact CGs' HRQOL. Affiliative stigma, CG-CR communication, CRs' reciprocity of support and other psychosocial factors indirectly and differentially affected physical and mental HRQOL through effects on secondary stress and role ambivalence. Dyad-focused intervention on interpersonal communication and support exchange may improve HRQOL and resilience of CGs of vulnerable people living with HIV.

RESUMEN: La literatura sobre calidad de vida relacionada con la salud (CVRS) se ha centrado en las personas que viven con enfermedades crónicas, con menos atención a la CVRS entre los cuidadores informales. Utilizamos datos diádicos transversales de recibidores de cuidado (RC) que viven con VIH y de la persona que identificaron como su principal cuidador informal (no remunerado) (CI) para identificar los factores psicosociales y en la relación de cuidado (incluyendo la ambivalencia del rol de CI y del estrés) asociado con calidad de vida. Realizamos análisis factoriales confirmatorios y pruebas de modelación de ecuaciones estructurales. Los resultados demostraron los efectos interdependientes de la relación entre el cuidador y el recibidor de cuidado y revelan cómo las interacciones de la relación impactan la calidad de vida de los cuidadores. El estigma, la comunicación en la relación, la reciprocidad de apoyo de los recibidores de cuidado y otros factores psicosociales afectaron indirecta y diferencialmente la calidad de vida física y mental a través de los efectos sobre el estrés secundario y la ambivalencia de roles. Las intervenciones diádicas centradas en la comunicación interpersonal y la facilitación de apoyo pueden mejorar la calidad de vida y la capacidad de recuperación de los cuidadores de las personas vulnerables que viven con el VIH.

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.

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.

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.

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.

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. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

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. Using factor analysis and longitudinal structural equation modeling, we found that current substance use and negative family conflict tactics (i.e., non-negotiation) predicted PLWH's lower probability of ART adherence at 12-month follow-up; and greater HIV disclosure to support network members predicted a higher probability of adherence. These findings suggest the importance of family and other support network members in this vulnerable population's ART adherence. Social network-focused interventions promoting prosocial response to conflict and negotiation skills are important for improving vulnerable PLWH's HIV outcomes and reducing health disparities.

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).

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.

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.

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.

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.