Home Care Workers Providing Person-Centered Care to People With Dementia.

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.

Home Care Worker Continuity in Home-Based Long-Term Care: Associated Factors and Relationships With Client Health and Well-Being.

Background and Objectives: Despite the importance of provider continuity across healthcare settings, continuity among home care workers who provide hands-on long-term care is understudied. This project describes home care worker continuity, identifies factors associated with increased continuity, and examines associations between continuity and client outcomes. Research Design and Methods: We conducted a retrospective cohort study of clients receiving Medicaid-funded home-based long-term care (n = 3,864) using insurance plan and home care agency data from a large nonprofit organization. We estimated home care worker continuity for clients between 6-month clinical assessments using Bice-Boxerman scores. We then used generalized estimating equations to model associations between home care worker continuity and (1) client characteristics (e.g., cognitive impairment), and (2) client functional, health, and psychosocial outcomes. Results: While home care worker continuity was lowest for clients receiving the most weekly care hours, a range of continuity existed across all levels of care need. Those who were male, older, Asian/Pacific Islander/Native American, cognitively impaired, and functionally impaired had lower continuity. Higher home care worker continuity was significantly associated (p < .05) with fewer falls, a higher likelihood of functional improvement/stabilization, and fewer depressive symptoms. Discussion and Implications: The finding that home care worker continuity is associated with the health and well-being of home-based long-term care clients underscores the importance of building high-quality relationships in long-term care. Continued efforts are necessary to understand and advance home care worker continuity and to identify other aspects of the home care experience that benefit those receiving long-term care at home.

Home and Community-Based Service Use Varies by Health Care Team and Comorbidity Level of Veterans with Dementia.

Home and community-based services (HCBSs) such as home care and adult day centers are vital to supporting adults with dementia in community settings. We investigated whether HCBS use (use of both home care and adult day, use of one service, and use of neither service) varied between adults receiving care from three types of health-care teams with case management from social workers and nurses, and by comorbidity level, using 2019 data of 143,281 patients with dementia in the Veterans Health Administration. We compared HCBS use by patients' type of case-managed team (Home-Based Primary Care, geriatrics-based primary care, and dementia-focused specialty care) to patients in none of these teams, stratified by patients' non-dementia comorbidities (<4 or ≥4). Each type of health-care team was associated with both home care and adult day services, at each level of comorbidity. Home-Based Primary Care was most consistently associated with other forms of HCBS use, followed by Dementia Clinics and geriatrics-based primary care, for patients with ≥4 non-dementia comorbidities. Our findings suggest that case management in primary and specialty care settings is a contributor to the use of critical community supports by patients with the most complex needs.

Perceptions of Palliative Care Program Viability During the Pandemic: Qualitative Results From a National Survey.

Background: Palliative care programs have played a significant role during the COVID-19 pandemic. However, the financial impact of the pandemic and operational challenges for palliative care programs have raised concerns for their future viability. Objectives: To explore palliative care program leaders' perceptions of the future viability of their programs in the context of the pandemic and inform future educational and program development. Methods: Surveys were sent to 1430 specialist palliative care program leaders, identified through the Center to Advance Palliative Care's contact lists, via email in May 2020 and January 2021. Leaders were asked why they were or were not concerned about the viability of their palliative care programs. Qualitative content analysis was applied to determine themes. Results: We received 440 responses. Most programs served hospital settings and were geographically located across all US regions. We identified four themes: 1) The importance of being valued by organizational leadership and peers, 2) The importance of adequate and supported palliative care staff, 3) The pandemic validated and accelerated the need for palliative care, and 4) The pandemic perpetuated organizational financial concerns. Conclusion: Findings provide insights about palliative care program viability from the perspective of program leaders during a global pandemic. Technical assistance to support palliative care teams and their relationships with stakeholders, methods to measure the impact of peer support, efforts to educate administrators about the value of palliative care, and efforts to reduce burnout are needed to sustain palliative care programs into the future.

"I Depend on Her for Everything": A Retrospective Chart Review of Home Care Worker Service Disruptions for Homebound Older Adults During the COVID-19 Pandemic.

Home care workers played critical roles in meeting the complex medical and social needs of homebound adults during COVID-19, yet their contributions remain underappreciated. This study characterizes home care workers' roles during COVID-19 and examines how home care disruptions impacted homebound individuals and caregivers. Using a qualitative analysis of electronic medical records among a randomly sampled subset of homebound patients in a home-based primary care practice, we found that home care workers were essential in meeting existing and new needs of homebound individuals. Insufficient home care worker services, including unstable schedules and inadequate hours of paid care, became particularly disruptive, leading to risks for patients and their caregivers. Given their integral role on care teams, home care workers must be a policy focus to prepare for emergent situations and ensure that homebound individuals have access to high quality, stable home care.

Disruptions in Home Hospice Care due to the COVID-19 Pandemic.

Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Design: Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Setting/Subjects: Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.

Improving Care Coordination Between Veterans Health Administration Primary Care Teams and Community Home Health Aide Providers: A Qualitative Study.

Effective coordination between medical and long-term services is essential to high-quality primary care for older adults, but can be challenging. Our study assessed coordination and communication through semi-structured interviews with Veterans Health Administration (VHA) primary care clinicians (n = 9); VHA-contracted home health agencies (n = 6); and home health aides (n = 8) caring for veterans at an urban VHA medical center. Participants reported (1) establishing home health services is complex, requiring collaboration between many individuals and systems; (2) communication between medical teams and agencies is often reactive; (3) formal communication channels between medical teams and agencies are lacking; (4) aides are an important source of patient information; and (5) aides report important information, but rarely receive it. Removing structural communication barriers; incentivizing reporting channels and information sharing between aides, agencies, and primary care teams; and integrating aides into interdisciplinary teams may improve coordination of medical and long-term care.

Care Disruptions and End-Of-Life Care Experiences Among Home-Based Primary Care Patients During the COVID-19 Pandemic in New York City: A Retrospective Chart Review.

Background: Research on deaths during COVID-19 has largely focused on hospitals and nursing homes. Less is known about medically complex patients receiving care in the community. We examined care disruptions and end-of-life experiences of homebound patients receiving home-based primary care (HBPC) in New York City during the initial 2020 COVID-19 surge. Methods: We conducted a retrospective chart review of patients enrolled in Mount Sinai Visiting Doctors who died between March 1-June 30, 2020. We collected patient sociodemographic and clinical data and analyzed care disruptions and end-of-life experiences using clinical notes, informed by thematic and narrative analysis. Results: Among 1300 homebound patients, 112 (9%) died during the study period. Patients who died were more likely to be older, non-Hispanic white, and have dementia than those who survived. Thirty percent of decedents had confirmed or probable COVID-19. Fifty-eight (52%) were referred to hospice and 50 enrolled. Seventy-three percent died at home. We identified multiple intersecting disruptions in family caregiving, paid caregiving, medical supplies and services, and hospice care, as well as hospital avoidance, complicating EOL experiences. The HBPC team responded by providing clinical, logistical and emotional support to patients and families. Conclusion: Despite substantial care disruptions, the majority of patients in our study died at home with support from their HBPC team as the practice worked to manage care disruptions. Our findings suggest HBPC's multi-disciplinary, team-based model may be uniquely suited to meet the needs of the most medically and socially vulnerable older adults at end of life during public health emergencies.

Does Connectedness Matter? The Association Between Mutuality and Job Satisfaction Among Home Health Aides Caring for Adults With Heart Failure.

Home health aides (HHAs) provide care to many adults with heart failure (HF) in the home. As the demand for HHAs increases, there is a need to promote HHAs' job satisfaction and retention. In this cross-sectional community-partnered study, we examined whether mutuality (e.g., quality of the HHA-patient relationship), is associated with job satisfaction among HHAs caring for adults with HF. Mutuality was assessed with the Mutuality Scale, which measures overall mutuality and its four domains (reciprocity, love and affection, shared pleasurable activities, and shared values). Our final sample of 200 HHAs was primarily female. The mean overall mutuality score was 2.92 out of 4 (SD 0.79). In our final model, overall mutuality and each of the four domains were associated with increased job satisfaction; however, only the shared pleasurable activities domain was significant (aPR: 1.15 [1.03-1.32]). Overall, mutuality may play a role in promoting job satisfaction among HHAs.

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

Contextual Forces Shaping Home-Based Health Care Services Between 2010 and 2020: Insights From the Social-Ecological Model and Organizational Theory.

Demands for home-based care have surged alongside population aging, preferences for aging in place, policy-driven reforms incentivizing lower hospital utilization, and public concerns around coronavirus disease 2019 transmissions in institutional care settings. However, at both macro and micro levels, sociopolitical, and infrastructural contexts are not aligned with the operational needs of home health care organizations, presenting obstacles to home health care equity. We integrate the social-ecological model and organizational theory to highlight contextual forces shaping the delivery of home-based care services between 2010 and 2020. Placing home-based health care organizations at the center of observation, we discuss patterns and trends of service delivery as systematic organizational behaviors reflecting the organizations' adaptations and responses to their surrounding forces. In this light, we consider the implications of provision and access to home care services for health equity, discuss topics that are understudied, and provide recommendations for home-based health care organizations to advance home health care equity. The article represents a synthesis of recent literature and our research and industry experiences.

A national qualitative study of Hospital-at-Home implementation under the CMS Acute Hospital Care at Home waiver.

BACKGROUND: The Centers for Medicare & Medicaid Services (CMS) announced the Acute Hospital Care at Home (AHCaH) waiver program in November 2020 to help expand hospital capacity to cope with the COVID-19 pandemic. The AHCaH waived the 24/7 on-site nursing requirement and enabled hospitals to obtain full hospital-level diagnosis-related group (DRG) reimbursement for providing Hospital-at-Home (HaH) care. This study sought to describe AHCaH implementation processes and strategies at the national level and identify challenges and facilitators to launching or adapting a HaH to meet waiver requirements. METHODS: We conducted semi-structured interviews to explore barriers and facilitators of HaH implementation. The analysis was informed by the Exploration, Preparation, Implementation, and Sustainment (EPIS) implementation framework. Interviews were audio recorded for transcription and thematic coding. PRINCIPAL FINDINGS: We interviewed a sample of clinical leaders (N = 18; clinical/medical directors, operational and program managers) from 14 new and pre-existing U.S. HaH programs diverse by size, urbanicity, and geography. Participants were enthusiastic about the AHCaH waiver. Participants described barriers and facilitators at planning and implementation stages within three overarching themes influencing waiver program implementation: 1) institutional value and assets; 2) program components, such as electronic health records, vendors, pharmacy, and patient monitoring; and 3) patient enrollment, including eligibility and geographic limits. CONCLUSIONS: Implementation of AHCaH waiver is a complex process that requires building components in compliance with the requirements to extend the hospital into the home, in coordination with internal and external partners. The study identified barriers that potential adopters and proponents should consider alongside the strategies that some organizations have found useful. Clarity regarding the waiver's future may expedite HaH model dissemination and ensure longevity of this valuable model of care delivery.

Essential but Excluded: Building Disaster Preparedness Capacity for Home Health Care Workers and Home Care Agencies.

COVID-19 has demonstrated the essential role of home care services in supporting community-dwelling older and disabled individuals through a public health emergency. As the pandemic overwhelmed hospitals and nursing homes, home care helped individuals remain in the community and recover from COVID-19 at home. Yet unlike many institutional providers, home care agencies were often disconnected from broader public health disaster planning efforts and struggled to access basic resources, jeopardizing the workers who provide this care and the medically complex and often marginalized patients they support. The exclusion of home care from the broader COVID-19 emergency response underscores how the home care industry operates apart from the traditional health care infrastructure, even as its workers provide essential long-term care services. This special article (1) describes the experiences of home health care workers and their agencies during COVID-19 by summarizing existing empiric research; (2) reflects on how these experiences were shaped and exacerbated by longstanding challenges in the home care industry; and (3) identifies implications for future disaster preparedness policies and practice to better serve this workforce, the home care industry, and those for whom they care.

Hospital In Home: Evaluating Need and Readiness for Implementation (HENRI) in the Department of Veterans Affairs: protocol for a mixed-methods evaluation and participatory implementation planning study.

BACKGROUND AND OBJECTIVES: The Department of Veterans Affairs (VA) Hospital-In-Home (HIH) program delivers patient-centered, acute-level hospital care at home. Compared to inpatient care, HIH has demonstrated improved patient safety, effectiveness, and patient and caregiver satisfaction. The VA Office of Geriatrics & Extended Care (GEC) has supported the development of 12 HIH program sites nationally, yet adoption in VA remains modest, and questions remain regarding optimal implementation practices to extend reach and adaptability of this innovation. Guided by theoretical and procedural implementation science frameworks, this study aims to systematically gather evidence from the 12 HIH programs and to develop a participatory approach to engage stakeholders, assess readiness, and develop/adapt implementation strategies and evaluation metrics. RESEARCH DESIGN AND METHODS: We propose a multi-phase concurrent triangulation design comprising of (1) qualitative interviews with key informants and document review, (2) quantitative evaluation of effectiveness outcomes, and (3) mixed-methods synthesis and adaptation of a Reach Effectiveness Adoption Implementation Maintenance (RE-AIM)-guided conceptual framework. RESULTS: The prospective phase will involve a participatory process of identifying stakeholders (leadership, HIH staff, veterans, and caregivers), engaging in planning meetings informed by implementation mapping, and developing implementation logic models and blueprints. The process will be assessed using a mixed-methods approach through participant observation and document review. DISCUSSION AND IMPLICATION: This study will support the continued spread of HIH programs, generate a catalog of HIH implementation evidence, and create implementation tools and infrastructure for future HIH development. The multi-phase nature of informing prospective planning with retrospective analysis is consistent with the Learning Health System framework.

Care disruptions among the homebound during the COVID-19 pandemic: An analysis of the role of dementia.

INTRODUCTION: Seriously ill people with dementia living at home may be particularly vulnerable to disruptions in their care during times of crisis. The study sought to describe care experiences of those receiving home-based primary care in New York City during the COVID-19 pandemic and compare the experiences of people with and without dementia. METHODS: We conducted a retrospective review of all electronic medical record notes between March 1, 2020 and December 30, 2020 among a sample of home-based primary care recipients (n = 228), including all deaths that occurred in the spring of 2020. Drawing from administrative records and using an abstraction tool that included both structured (e.g., documented COVID-19 exposure) and unstructured (e.g., text passage describing caregiver burden) data, we identified salient COVID-19 related care experiences and identified and categorized major disruptions in care. RESULTS: Both people with and without dementia experienced significant disruptions of paid caregiving, family caregiving, and home-based services during the COVID-19 pandemic. While the paid caregivers of people with dementia reported more burden to the home-based primary care team as compared to people without dementia, we found little evidence of differences in quantity or type of COVID-19 related disruptions relative to dementia status. DISCUSSION: While those with dementia have distinct care needs, our findings emphasize the way that dementia may be one piece of a larger clinical picture of serious illness. In order to support all patients with high care needs in crisis, we need to understand the interdependence of clinical care, long-term care, and family caregiving support for older adults and view dementia within the larger context of serious illness and care need.

Title: advancing urban health equity in the United States in an age of health care gentrification: a framework and research agenda.

BACKGROUND: Access to health care has traditionally been conceptualized as a function of patient socio-demographic characteristics (i.e., age, race/ethnicity, education, health insurance status, etc.) and/or the system itself (i.e., payment structures, facility locations, etc.). However, these frameworks typically do not take into account the broader, dynamic context in which individuals live and in which health care systems function. PURPOSE: The growth in market-driven health care in the U.S. alongside policies aimed at improving health care delivery and quality have spurred health system mergers and consolidations, a shift toward outpatient care, an increase in for-profit care, and the closure of less profitable facilities. These shifts in the type, location and delivery of health care services may provide increased access for some urban residents while excluding others, a phenomenon we term "health care gentrification." In this commentary, we frame access to health care in the United States in the context of neighborhood gentrification and a concurrent process of changes to the health care system itself. CONCLUSIONS: We describe the concept of health care gentrification, and the complex ways in which both neighborhood gentrification and health care gentrification may lead to inequitable access to health care. We then present a framework for understanding health care gentrification as a function of dynamic and multi-level systems, and propose ways to build on existing models of health care access and social determinants of health to more effectively measure and address this phenomenon. Finally, we describe potential strategies applied researchers might investigate that could prevent or remediate the effects of health care gentrification in the United States.

Formative Evaluation of a Workforce Investment Organization to Provide Scaled Training for Home Health Aides Serving Managed Long-Term Care Plan Clients in New York State.

As part of its Medicaid program restructuring, New York State funded 11 Workforce Investment Organizations (WIO) to support training initiatives for the long-term care workforce. Focusing on one WIO, this formative evaluation examined quality improvement training programs delivered to 11,163 Home Health Aides employed by home care agencies serving clients of Managed Long-Term Care plans. Results are presented from a thematic analysis of qualitative interviews with organizational and program stakeholders examining contextual factors influencing program objectives, implementation, barriers and facilitators, and perceived outcomes. Findings suggested that WIO training programs were implemented during a period of shifting organizational strategies alongside value-based payment reforms and challenges to aide recruitment and retention. Stakeholders appraised WIO training programs positively and valued program flexibility and facilitation of communication and collaboration between agencies and plans. However, delivery and implementation challenges existed, and industry-wide structural fragmentation led stakeholders to question the WIO's larger impact.

Perspectives of certified nursing assistants and administrators on staffing the nursing home frontline during the COVID-19 pandemic.

OBJECTIVE: To identify best practices to support and grow the frontline nursing home workforce based on the lived experience of certified nursing assistants (CNAs) and administrators during COVID-19. STUDY SETTING: Primary data collection with CNAs and administrators in six New York metro area nursing homes during fall 2020. STUDY DESIGN: Semi-structured interviews and focus groups exploring staffing challenges during COVID-19, strategies used to address them, and recommendations moving forward. DATA COLLECTION: We conducted interviews with 6 administrators and held 10 focus groups with day and evening shift CNAs (n = 56) at 6 nursing homes. Data were recorded and transcribed verbatim and analyzed through directed content analysis using a combined inductive and deductive approach to compare perceptions across sites and roles. PRINCIPAL FINDINGS: CNAs and administrators identified chronic staffing shortages that affected resident care and staff burnout as a primary concern moving forward. CNAs who felt most supported and confident in their continued ability to manage their work and the pandemic described leadership efforts to support workers' emotional health and work-life balance, teamwork across staff and management, and accessible and responsive leadership. However, not all CNAs felt these strategies were in place. CONCLUSIONS: Based on priorities identified by CNAs and administrators, we recommend several organizational/industry and policy-level practices to support retention for this workforce. Practices to stabilize the workforce should include 1) teamwork and person-centered operational practices including transparent communication; 2) increasing permanent staff to avoid shortages; and 3) evaluating and building on successful COVID-related innovations (self-managed teams and flexible benefits). Policy and regulatory changes to promote these efforts are necessary to developing industry-wide structural practices that target CNA recruitment and retention.

In Their Own Words: The Challenges Experienced by Certified Nursing Assistants and Administrators During the COVID-19 Pandemic.

This qualitative study aimed to provide an in-depth understanding of the challenges experienced by certified nursing assistants and administrators during the unprecedented COVID-19 crisis. We conducted 6 administrator interviews and 10 remote focus groups with day and evening CNAs at 5 nursing homes (N = 56) in downstate New York. Content analysis was conducted, and emerging themes were identified across sites and roles. Results showed numerous challenges for both CNAs and administrators including many that were personal. These personal challenges included feeling helpless, anxious, or fearful; experience of COVID illness; and balancing high concurrent demands of work and family. There were also many operational challenges such as a lack of COVID testing capacity, information, and consistent guidance and support, staffing and equipment. Understanding these challenges can facilitate goals to promote future safety, skill refinement, and enhanced resilience in the workforce.