Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC): a study protocol for a hybrid type 1 randomized controlled trial.

BACKGROUND: There are persistent racial and ethnic health disparities in end-of-life health outcomes in the United States. African American patients are less likely than White patients to access palliative care, enroll in hospice care, have documented goals of care discussions with their healthcare providers, receive adequate symptom control, or die at home. We developed Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC) to address these disparities. DeCIDE PC is an integrated community health worker (CHW) palliative care intervention that uses community health workers (CHWs) as care team members to enhance the receipt of palliative care for African Americans with advanced cancer. The overall objectives of this study are to (1) assess the effectiveness of the DeCIDE PC intervention in improving palliative care outcomes amongst African American patients with advanced solid organ malignancy and their informal caregivers, and (2) develop generalizable knowledge on how contextual factors influence implementation to facilitate dissemination, uptake, and sustainability of the intervention. METHODS: We will conduct a multicenter, randomized, assessor-blind, parallel-group, pragmatic, hybrid type 1 effectiveness-implementation trial at three cancer centers across the United States. The DeCIDE PC intervention will be delivered over 6 months with CHW support tailored to the individual needs of the patient and caregiver. The primary outcome will be advance care planning. The treatment effect will be modeled using logistic regression. The secondary outcomes are quality of life, quality of communication, hospice care utilization, and patient symptoms. DISCUSSION: We expect the DeCIDE PC intervention to improve integration of palliative care, reduce multilevel barriers to care, enhance clinic and patient linkage to resources, and ultimately improve palliative care outcomes for African American patients with advanced cancer. If found to be effective, the DeCIDE PC intervention may be a transformative model with the potential to guide large-scale adoption of promising strategies to improve palliative care use and decrease disparities in end-of-life care for African American patients with advanced cancer in the United States. TRIAL REGISTRATION: Registered on ClinicalTrials.gov (NCT05407844). First posted on June 7, 2022.

Piloting the Sexual and Gender Minority Cancer Curricular Advances for Research and Education (SGM Cancer CARE) Workshop: Research Training in the Service of SGM Cancer Health Equity.

The purpose of this study is to describe the context, curriculum design, and pilot evaluation of the educational program "Sexual and Gender Minority Cancer Curricular Advances for Research and Education" (SGM Cancer CARE), a workshop for early-career researchers and healthcare providers interested in gaining knowledge and skills in sexual and gender minority (SGM) cancer research and healthcare advocacy. A needs assessment of a sample of clinicians and researchers (n = 104) and feedback from an Advisory Board informed the curriculum design of the SGM Cancer CARE workshop. Four SGM-tailored modules, focusing on epidemiology, clinical research, behavioral science and interventions, and community-based participatory approaches, were developed and tested in a 2.5-day virtual format among 19 clinicians and researchers. A fifth module to provide feedback to participants on brief presentations about their SGM cancer research ideas or related efforts was added later. A mixed-methods evaluation comprised of pre- and post-modular online evaluation surveys and virtual focus groups was used to determine the degree to which the workshop curriculum met participant needs. Compared to pre-module evaluations, participants reported a marked increase in SGM cancer research knowledge in post-module scores. Quantitative results were supported by our qualitative findings. In open field response survey questions and post-workshop focus groups, participants reported being extremely pleased with the content and delivery format of the SGM Cancer CARE workshop. Participants did regret not having the opportunity to connect with instructors, mentors, and colleagues in person. The SGM Cancer CARE curriculum was shown to increase the knowledge, skills, and level of preparedness of early-career clinicians and scientists to conduct culturally relevant and appropriate research needed to improve care for SGM persons across the cancer care continuum from prevention to survivorship.

Preserving independence among under-resourced older adults in the Southeastern United States: existing barriers and potential strategies for research.

Disability prevention and preservation of independence is crucial for successful aging of older adults. To date, relatively little is known regarding disparities in independent aging in a disadvantaged older adult population despite widely recognized health disparities reported in other populations and disciplines. In the U.S., the Southeastern region also known as "the Deep South", is an economically and culturally unique region ravaged by pervasive health disparities - thus it is critical to evaluate barriers to independent aging in this region along with strategies to overcome these barriers. The objective of this narrative review is to highlight unique barriers to independent aging in the Deep South and to acknowledge gaps and potential strategies and opportunities to fill these gaps. We have synthesized findings of literature retrieved from searches of computerized databases and authoritative texts. Ultimately, this review aims to facilitate discussion and future research that will help to address the unique challenges to the preservation of independence among older adults in the Deep South region.

Can you hear me now?: Improving palliative care access through telehealth.

Telehealth has been increasingly used to expand healthcare access over the last two decades. However, this had not been the case for palliative care (PC), because telehealth was considered nontraditional and impractical due to the sensitive nature of conversations and a "high touch" philosophy. Motivated by limited PC access to rural and underserved populations and positive PC telehealth studies, clinical PC telehealth models have been developing. However, nearly overnight, the COVID-19 pandemic accelerated the use and uptake of telehealth across health care and especially in PC. As a result, clinicians, administrators, and others agree that telehealth is "here to stay," and will likely maintain widespread use and refinement beyond rural areas. The purpose of this review is to describe exemplar PC telehealth programs in research and clinical practice, including pros and cons, lessons learned, and future directions for the ongoing development and expansion of PC via telehealth across diseases and the lifespan.

Current status of palliative care--clinical implementation, education, and research.

Palliative and end-of-life care is changing in the United States. This dynamic field is improving care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Methods of integrating current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.

National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The National Institutes of Health (NIH) Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was cosponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group. A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared an evidence report through a contract with the Agency for Healthcare Research and Quality to facilitate the discussion. During the 1.5-day workshop, invited experts discussed the body of evidence and attendees had the opportunity to comment during open discussions. After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepared a draft report that identified research gaps and future research priorities. The report was posted on the NIH Office of Disease Prevention Web site for 4 weeks for public comment.

Systematic Review of Palliative Care in the Rural Setting.

BACKGROUND: Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. METHODS: We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). RESULTS: We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. CONCLUSIONS: Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.

Implementation Barriers and Recommendations for a Multisite Community Health Worker Intervention in Palliative Care for African American Oncology Patients: A Qualitative Study.

Background: Palliative care remains underutilized by African American patients with advanced cancer. Community health workers (CHWs) may help improve palliative care outcomes among this patient population. Objectives: To explore barriers to success of a proposed CHW intervention and synthesize design and implementation recommendations to both optimize our intervention and inform others working to alleviate palliative care disparities. Design: Semi-structured qualitative interviews. Setting/Subjects: Key informants were health care professionals across clinical, leadership, and community health fields. Participants were recruited through purposive sampling from Baltimore, Maryland; Birmingham, Alabama; and Salisbury, Maryland. Measurements: Interviewers used an interview guide grounded in established implementation science models. Data were analyzed through a combined abductive/deductive approach by independent coders. A framework methodology was used to facilitate thematic analysis. Results: In total, 25 professionals completed an interview. Key informants discussed multiple barriers, including at the patient level (lack of knowledge), clinician and facility level (decreased workflow efficiency), and health system level (limited funding). Recommendations related to the intervention's design included high quality preintervention CHW training and full integration of CHWs into the care team to "bridge" divides between outpatient, inpatient, and at-home settings. Intervention delivery recommendations included clearly defining care team roles and balancing flexibility and standardization in CHW support approaches. These recommendations were then used to adapt the planned intervention and its implementation process. Conclusions: Clinicians, cancer center leaders, and CHWs identified multilevel potential barriers to the intervention's success but also described recommendations that may mitigate these barriers. Key informant input represents an important step prior to initiating CHW-based interventions.

African American patient and caregiver attitudes and perceptions of community health workers as lay patient navigators in palliative care.

BACKGROUND: Concurrent palliative care for patients with advanced cancer has been shown to reduce physical and psychological symptoms, and improve the quality of life of patients with advanced cancer. Underutilization of palliative care services, especially among African American patients with advanced cancer, remains an important public health problem. To address this gap, we developed a community health worker (CHW) palliative care intervention for African American patients with advanced cancer, which is being formally assessed through an ongoing effectiveness-implementation trial (NCT05407844). As part of the preparatory phase of this study, we conducted qualitative interviews with African American patients with advanced cancer and their caregivers. The objective of this analysis was to explore patient and caregiver attitudes and perceptions of the CHW palliative care intervention to support African American patients with advanced cancer in accessing palliative care. METHODS: We used purposive sampling to identify African American patients with advanced cancer and their informal caregivers from clinic lists and through referring oncologists. We conducted six individual and group semi-structured interviews with patients and caregivers between November 2022 and April 2023 at three enrollment sites: Johns Hopkins Hospital, TidalHealth Peninsula Regional, and University of Alabama at Birmingham Hospital. The interview guide was informed by the Consolidated Framework for Implementation Research, with a focus on the Innovation and Inner Setting domains. We used the framework method for thematic analysis. RESULTS: Overall, there was a lack of awareness and understanding of palliative care, due primarily to limited experiences with palliative care services among study participants. Despite this lack of familiarity, participants recognized the potential benefits of palliative care for patients with advanced cancer. All study participants were enthusiastic about the concept of patient navigation and the CHW palliative care intervention, with CHWs as lay patient navigators in palliative care. When reflecting on their own experiences, patients and their caregivers identified several areas where CHWs may have supported their cancer care, such as care coordination. Study participants viewed the CHW palliative care intervention as fulfilling a need within the African American community. Participants also made intervention delivery recommendations related to CHW characteristics, training and integration, and communication. CONCLUSIONS: This study provides evidence for the acceptability of a CHW palliative care intervention for African American patients with advanced cancer and their caregivers. The findings of this study have led to intervention refinement, which will enhance implementation, delivery, and sustainability of the intervention.

Cultural Values Influence on Rural Family Caregivers' Decision-Making for Ill Older Adult Loved Ones.

CONTEXT: Rural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied. OBJECTIVE: This study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members. METHODS: This is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data. RESULTS: Twelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented. CONCLUSION: This study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.

Tumor Is Not the Only Target: Ensuring Equitable Person-Centered Supportive Care in the Era of Precision Medicine.

Communication in oncology has always been challenging. The new era of precision oncology creates prognostic uncertainty. Still, person-centered care requires attention to people and their care needs. Living with cancer portends an experience that is life-altering, no matter what the outcome. Supporting patients and families through this unique experience requires careful attention, honed skills, an understanding of process and balance measures of innovation, and recognizing that supportive care is a foundational element of cancer medicine, rather than an either-or approach, an and-with approach that emphasizes the regular integration of palliative care (PC), geriatric oncology, and skilled communication.

Respecting Faith, Hope, and Miracles in African American Christian Patients at End-of-Life: Moving from Labeling Goals of Care as "Aggressive" to Providing Equitable Goal-Concordant Care.

In this article, we demonstrate first how the term "aggressive care," used loosely by clinicians to denote care that can negatively impact quality of life in serious illness, is often used to inappropriately label the preferences of African American patients, and discounts, discredits, and dismisses the deeply held beliefs of African American Christians. This form of biased communication results in a higher proportion of African Americans than whites receiving care that is non-goal-concordant and contributes to the prevailing lack of trust the African American community has in our healthcare system. Second, we invite clinicians and health care centers to make the perspectives of socially marginalized groups (in this case, African American Christians) the central axis around which we find solutions to this problem. Based on this, we provide insight and understanding to clinicians caring for seriously ill African American Christian patients by sharing their beliefs, origins, and substantive importance to the African American Christian community. Third, we provide recommendations to clinicians and healthcare systems that will result in African Americans, regardless of religious affiliation, receiving equitable levels of goal-concordant care if implemented. KEY MESSAGE: Labeling care at end-of-life as "aggressive" discounts the deeply held beliefs of African American Christians. By focusing on the perspectives of this group clinicians will understand the importance of respecting their religious values. The focus on providing equitable goal-concordant care is the goal.

Community Informed Recruitment: A Promising Method to Enhance Clinical Trial Participation.

CONTEXT: Low recruitment rates in palliative care clinical trials amongst Black and rural individuals have been attributed to lack of trust and procedural barriers. Community engagement strategies have increased clinical trial participation of under-represented populations. OBJECTIVE: Describe a successful community-engaged recruitment strategy in an ongoing multi-site randomized clinical trial (RCT). STUDY DESIGN AND METHODS: Using community-based participatory research principles and input from a prior pilot study's community advisory group (CAG), we designed a novel recruitment strategy for Community Tele-Pal, a three-site, culturally based palliative care tele-consult RCT for Black and White seriously ill inpatients and their family caregivers. Local site CAGs helped design and implement a recruitment strategy in which a CAG member accompanied the study coordinators to introduce the study to eligible patients. Initially, CAG members could not accompany study coordinators in person due to pandemic restrictions. Hence, they created videos of themselves introducing the study, just as they would have done in person. We examined outcomes to date by the three recruitment methods and race. RESULTS: Of the 2879 patients screened, 228 were eligible and approached. Overall, the proportions of patients who consented 102 (44.7%) vs. not consented 126 (55.3%) were similar by race- White (consented= 75 [44.1%]) vs; Black (consented = 27 [46.6%]). Proportionally, consent rates favored CAG-involved methods: coordinator only- 47 approached and 13 (12.7%) consented vs. coordinator/CAG video-105 approached and 60 (58.8%) consented. CONCLUSION: A novel community-enhanced recruitment strategy demonstrated the potential to increase clinical trial participation from historically under-represented populations.

Elevating Home Health Aide Input in Co-Creation of COVID-19 Vaccine Messaging.

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.

Engaging African American family Caregivers in Developing a Culturally-responsive Interview Guide: A Multiphase Process and Approach.

Qualitatively eliciting historically marginalized populations' beliefs, values, and preferences is critical to capturing information that authentically characterizes their experiences and can be used to develop culturally-responsive interventions. Eliciting these rich perspectives requires researchers to have highly effective qualitative interviewing guides, which can be optimized through community engagement. However, researchers have had little methodological guidance on how community member engagement can aid development of interview guides. The purpose of this article is to provide a series of steps, each supported by a case example from our work with African American family caregivers, for developing an interview guide through community engagement. We conclude by highlighting how involving historically marginalized community members in these early stages of research study development can build trust, research partnerships, and acknowledge their contribution to the development of new knowledge.

Engaging Social Justice Methods to Create Palliative Care Programs That Reflect the Cultural Values of African American Patients with Serious Illness and Their Families: A Path Towards Health Equity.

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God's healing power are central to most African Americans, yet life-preserving care is considered "aggressive" by the healthcare system, and families are pressured to cease it.

Disparities and Racism Experienced Among Older African Americans Nearing End of Life.

Purpose of Review: The purpose of this review is to examine racism in healthcare as it relates to older African American adults. We focus on health disparities in old age and medical mismanagement throughout their lifespan. Recent Findings: In the United States there have been extensive medical advances over the past several decades. Individuals are living longer, and illnesses that were deemed terminal in the past are now considered chronic illnesses. While most individuals living with chronic illness have experienced better quality of life, this is not the case for many African American older adults. Summary: Older African American adults are less likely to have their chronic illness sufficiently managed and are more likely to die from chronic illnesses that are well controlled in Whites. African American older adults also continue to suffer from poorer healthcare outcomes throughout the lifespan to end-of-life.

Protecting our Elders and Developing Equitable Policies During Public Health Emergencies: Ethical Recommendations.

Purpose of the Review: Experiences of patients, families, healthcare workers and health systems during the COVID-19 pandemic and recent national focus on racial justice have forced a reconsideration of policies and processes of providing care in crisis situations when resources are scarce. The purpose of this review is to present recent developments in conceptualizing ethical crisis standards. Recent findings: Several recent papers have raised concerns that "objective" scarce resource allocation protocols will serve to exacerbate underlying social inequities. Older adults and their formal and informal caregivers suffered from intersecting planning failures including lack of adequate stockpiling of personal protective equipment, failure to protect essential workers, neglect of long-term care facilities and homecare in disaster planning and de-prioiritization in triage algorithms. Summary: Revision of disaster planning guidelines is urgent. The time is now to apply lessons learned from COVID-19 before another disaster occurs. We present several suggestions for future plans.

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community.

Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians. Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ≥65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2. Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients. Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.