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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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. This article does not represent the views of the U.S. Department of Veterans Affairs or the United States government.

Context: Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. Objective: To examine hospice professionals' perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. Methods: We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. Results: Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. Conclusion: SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care., Research Design and Methods: Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis., Results: Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death," and emotional and spiritual support., Discussion and Implications: Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Context: The critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises., Objectives: Our goal was to support future organizational resilience by exploring hospice and palliative team members' perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC)., Methods: This qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45-60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations., Results: Participants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity., Conclusion: While additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To examine the relationship between site-level adaptation and early adoption of Caregivers Finding Important Resources, Support, and Training (FIRST) training during national implementation across diverse Veteran Health Administration (VA) medical centers., Data Sources and Study Setting: We enrolled and evaluated 25 VA medical centers (VAMCs). Along with administrative data on site characteristics, we examined site-reported data on adaptations and intervention adoption, defined as ≥4 training classes delivered to ≥5 caregivers at 6 months from April through October 2022., Study Design: A type III hybrid implementation-effectiveness cluster randomized controlled trial, randomized VAMCs 1:1 to receive foundational (low-touch) implementation support (n = 12) or the addition of enhanced (high-touch) implementation support (n = 13)., Data Collection/extraction Methods: At key implementation phases, VAMCs were asked to report adaptations including content, contextual modifications (format, setting, personnel, and population), and training of providers. We describe site-level adaptations by arm and by organizational characteristics that included VAMC complexity level, staffing, rurality, and organizational readiness to change. We used qualitative comparative analysis to identify unique adaptations that contributed to intervention adoption at 6 months., Principal Findings: VAMCs randomized to receive enhanced support reported slightly more adaptations than those randomized to foundational support. At 6 months, VAMCs with two or more adaptations adopted Caregivers FIRST at a higher rate than those with fewer adaptations (90% vs. 44%). Staffing adaptations (e.g., who delivered the intervention), format and content (e.g., modified delivery pace), and referring provider training were unique adaptations to adopting sites., Conclusions: Site-level adaptations were diverse and occurred more frequently in sites with early adoption of Caregivers FIRST. Future research should identify best practices of supporting and monitoring intervention adaptation. Understanding the role of adaptation in early adoption success could assist other healthcare systems in implementing interventions for caregivers., (Published 2024. This article is a U.S. Government work and is in the public domain in the USA. Health Services Research published by Wiley Periodicals LLC on behalf of Health Research and Educational Trust.)

Despite the potential of paid caregivers (e.g., home health aides and other home care workers) to improve their clients' health-related outcomes, paid caregivers are rarely integrated in the healthcare team. Geriatrician's perspective on paid caregivers can inform healthcare team approaches that leverage the paid caregiver role to improve older adult health. This secondary qualitative analysis ( n = 9 geriatricians, n = 27 interviews) used thematic analysis to identify geriatrician perceptions of when paid caregivers do the most to support the health of older adults. Geriatricians perceived that paid caregiver contributions were greatest in the care of high-needs older adults (e.g., dementia) and that paid caregivers stepped up to fill healthcare gaps when families could not provide all needed support (e.g., no family). Future work should consider how to best integrate paid caregivers who are already providing health-related support into the care team and explore barriers to paid caregiver participation in health-related care more generally., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. This paper does not reflect the views of the U.S. Department of Veterans Affairs or the United States government.

Objective: To assess whether a team collaboration strategy (CONNECT) improves implementation outcomes of a family caregiver skills training program (iHI-FIVES)., Data Sources and Study Setting: iHI-FIVES was delivered to caregivers at eight Veterans Affairs (VA) medical centers. Data sources were electronic health records, staff surveys, and interviews., Study Design: In a stepped wedge cluster randomized trial, sites were randomized to a 6-month time interval start date for iHI-FIVES launch. Sites were then randomized 1:1 to either (i) CONNECT, a team collaboration training strategy plus Replicating Effective Programs (REP), brief technical support training for staff, or (ii) REP only (non-CONNECT arm). Implementation outcomes included reach (proportion of eligible caregivers enrolled) and fidelity (proportion of expected trainings delivered). Staff interviews and surveys assessed team function including communication, implementation experience, and their relation to CONNECT and iHI-FIVES implementation outcomes., Data Collection/extraction Methods: The sample for assessing implementation outcomes included 571 Veterans referred to VA home- and community-based services and their family caregivers eligible for iHI-FIVES. Prior to iHI-FIVES launch, staff completed 65 surveys and 62 interviews. After the start of iHI-FIVES, staff completed 52 surveys and 38 interviews. Mixed methods evaluated reach and fidelity by arm., Principal Findings: Fidelity was high overall with 88% of expected iHI-FIVES trainings delivered, and higher among REP only (non-CONNECT) compared with CONNECT sites (95% vs. 80%). Reach was 18% (average proportion of reach across eight sites) and higher among non-CONNECT compared with CONNECT sites (22% vs. 14%). Qualitative interviews revealed strong leadership support at high-reach sites. CONNECT did not influence self-reported team function., Conclusions: A team collaboration strategy (CONNECT), added to REP, required more resources to implement iHI-FIVES than REP only and did not substantially enhance reach or fidelity. Leadership support was a key condition of implementation success and may be an important factor for improving iHI-FIVES reach with national expansion., (Published 2024. This article is a U.S. Government work and is in the public domain in the USA.)

Background and Objectives: As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time., Research Design and Methods: We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis., Results: Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for., Discussion and Implications: Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The literature of human and other host-associated microbiome studies is expanding rapidly, but systematic comparisons among published results of host-associated microbiome signatures of differential abundance remain difficult. We present BugSigDB, a community-editable database of manually curated microbial signatures from published differential abundance studies accompanied by information on study geography, health outcomes, host body site and experimental, epidemiological and statistical methods using controlled vocabulary. The initial release of the database contains >2,500 manually curated signatures from >600 published studies on three host species, enabling high-throughput analysis of signature similarity, taxon enrichment, co-occurrence and coexclusion and consensus signatures. These data allow assessment of microbiome differential abundance within and across experimental conditions, environments or body sites. Database-wide analysis reveals experimental conditions with the highest level of consistency in signatures reported by independent studies and identifies commonalities among disease-associated signatures, including frequent introgression of oral pathobionts into the gut., (© 2023. The Author(s).)

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.

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., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

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.

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.

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.

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.

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.

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.

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., (© 2022 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

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., (© 2022 The American Geriatrics Society.)

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., (Published by Elsevier Inc.)

Background: Health information exchange (HIE) notifications when patients experience cross-system acute care encounters offer an opportunity to provide timely transitions interventions to improve care across systems., Objective: To compare HIE notification followed by a post-hospital care transitions intervention (CTI) with HIE notification alone., Design: Cluster-randomized controlled trial with group assignment by primary care team., Patients: Veterans 65 or older who received primary care at 2 VA facilities who consented to HIE and had a non-VA hospital admission or emergency department visit between 2016 and 2019., Interventions: For all subjects, real-time HIE notification of the non-VA acute care encounter was sent to the VA primary care provider. Subjects assigned to HIE plus CTI received home visits and telephone calls from a VA social worker for 30 days after arrival home, focused on patient activation, medication and condition knowledge, patient-centered record-keeping, and follow-up., Measures: Primary outcome: 90-day hospital admission or readmission., Secondary Outcomes: emergency department visits, timely VA primary care team telephone and in-person follow-up, patients' understanding of their condition(s) and medication(s) using the Care Transitions Measure, and high-risk medication discrepancies., Key Results: A total of 347 non-VA acute care encounters were included and assigned: 159 to HIE plus CTI and 188 to HIE alone. Veterans were 76.9 years old on average, 98.5% male, 67.8% White, 17.1% Black, and 15.1% other (including Hispanic). There was no difference in 90-day hospital admission or readmission between the HIE-plus-CTI and HIE-alone groups (25.8% vs. 20.2%, respectively; risk diff 5.6%; 95% CI - 3.3 to 14.5%, p = .25). There was also no difference in secondary outcomes., Conclusions: A care transitions intervention did not improve outcomes for veterans after a non-VA acute care encounter, as compared with HIE notification alone. Additional research is warranted to identify transitions services across systems that are implementable and could improve outcomes., (© 2022. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

Microbiome studies of inflammatory bowel diseases (IBD) have achieved a scale for meta-analysis of dysbioses among populations. To enable microbial community meta-analyses generally, we develop MMUPHin for normalization, statistical meta-analysis, and population structure discovery using microbial taxonomic and functional profiles. Applying it to ten IBD cohorts, we identify consistent associations, including novel taxa such as Acinetobacter and Turicibacter, and additional exposure and interaction effects. A single gradient of dysbiosis severity is favored over discrete types to summarize IBD microbiome population structure. These results provide a benchmark for characterization of IBD and a framework for meta-analysis of any microbial communities., (© 2022. The Author(s).)

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., (© 2022. The Author(s).)

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., (© 2022 Health Research and Educational Trust.)

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.

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.

Background: Home health aides are important but often overlooked members of care teams, providing functional and emotional support to patients. These services became increasingly important during the COVID-19 pandemic as older adults faced disruptions in in-person medical services and family caregiving. Understanding how aides supported healthcare teams is important for informing emergency planning and better integrating home health services with primary care., Objective: To describe aides' roles in supporting veterans and working with primary care teams during COVID-19 and identify COVID-related changes in tasks., Design: Semi-structured interviews., Participants: Eight home health aides, 6 home health agency administrators, and 9 primary care team members (3 RNs, 3 social workers, 3 MDs) serving veterans at a large, urban, Veterans Affairs medical center., Approach: Combined deductive and inductive analysis to identify a priori concepts (aide roles; changes in tasks and new tasks during COVID-19) and emergent ideas. Aide, administrator, and provider interviews were analyzed separately and compared and contrasted to highlight emergent themes and divergent perspectives., Key Results: Participants reported an increase in the volume and intensity of tasks that aides performed during the pandemic, as well as the shifting of some tasks from the medical care team and family caregivers to the aide. Four main themes emerged around aides' roles in the care team during COVID-19: (1) aides as physically present "boots on the ground" during medical and caregiving disruptions, (2) aides as care coordination support, (3) aides as mental health support, and (4) intensification of aides' work., Conclusions: Home health aides played a central role in coordinating care during the COVID-19 pandemic, providing hands-on functional, medical, and emotional support. Integrating aides more formally into healthcare teams and expanding their scope of practice in times of crisis and beyond may improve care coordination for older veterans., (© 2022. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

Workers engaged in reproductive labor-the caring work that maintains society and supports its growth-contribute to societal health while also enduring the harms of precarious labor and substantial work stress. How can we conceptualize the effects of reproductive labor on workers and society simultaneously? In this commentary, we analyze four types of more relational and less relational careworkers-homeless shelter workers, school food workers, home care aides, and household cleaners-during the COVID-19 pandemic. We then make a case for a new model of societal health that recognizes the contributions of careworkers and healthy carework. Our model includes multi-sectoral social policies supporting both worker health and societal health and acknowledges several dimensions of work stress for careworkers that have received insufficient attention. Ultimately, we argue that the effects of reproductive labor on workers and society must be considered jointly, a recognition that offers an urgent vision for repairing and advancing societal health.

For home care agencies and aides, the death of clients has important, yet often unrecognized, workforce implications. While research demonstrates that client death can cause grief and job insecurity for aides, we currently lack home care agencies' perspectives on this issue and approaches to addressing it. This study uses key informant interviews with leaders from a diverse sample of eight New York City home care agencies to explore facilitators and barriers to agency action. We found that agencies engaged primarily in a range of informal, reactive practices related to client death, and relatively few targeted and proactive efforts to support aides around client death. While leaders generally acknowledged a need for greater aide support, they pointed to a lack of sustainable home care financing and policy resources to fund this. We recommend increased funding to support wages, paid time off, and supportive services, and discuss implications for future research.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews ( n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia ( n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

Older veterans enrolled in the Veterans Health Administration (VHA) often use both VHA and non-VHA providers for their care. This dual use, especially around an inpatient visit, can lead to fragmented care during the time of transition post-discharge. Interventions that target patient activation may be valuable ways to help veterans manage complex medication regimens and care plans from multiple providers. The Care Transitions Intervention (CTI) is an evidence-based model that helps older adults gain confidence and skills to achieve their health goals post-discharge. Our study examined the impact of CTI upon patient activation for veterans discharged from non-VHA hospitals. In total, 158 interventions were conducted for 87 veterans. From baseline to follow-up there was a significant 1.7-point increase in patient activation scores, from 5.4 to 7.1. This association was only found among those who completed the intervention. The most common barriers to completion were difficulty reaching the veteran by phone, patient declining the intervention, and rehospitalization during the 30 days post-discharge. Care transitions guided by social workers may be a promising way to improve patient activation. However, future research and practice should address barriers to completion and examine the impact of increased patient activation on health outcomes.

The rapid deployment of video visits during COVID-19 may have posed unique challenges for home-based primary care (HBPC) practices due to their hands-on model of care and older adult population. This qualitative study examined provider perceptions of video visits during the first wave of the COVID-19 crisis in New York City (NYC) through interviews with HBPC clinical/medical directors, program managers, nurse practitioners/nurse managers, and social work managers ( n = 13) at six NYC-area practices. Providers reported a combination of commercial (health system-supported) and consumer (e.g., FaceTime) technological platforms was essential. Video visit benefits included triaging patient needs, collecting patient information, and increasing scheduling capacity. Barriers included cognitive and sensory abilities, technology access, reliance on caregivers and aides, addressing sensitive topics, and incomplete exams. Effectively integrating video visits requires considering how technology can be proactively integrated into practice. A policy that promotes platform flexibility will be crucial in fostering video integration.

Background/objectives: To identify major barriers to video-based telehealth use among homebound older adults., Design: Cross-sectional survey., Setting: A large home-based primary care (HBPC) program in New York City (NYC) serving 873 homebound patients living in the community., Participants: Sixteen primary care physicians., Measurements: An 11-item assessment of provider perceptions of patients' experience with and barriers to telehealth., Results: According to physicians in the HBPC program, more than one-third (35%) of homebound patients (mean age of 82.7; 46.6% with dementia; mean of 4 comorbidities/patient) engaged in first-time video-based telehealth encounters between April and June 2020 during the first COVID-19 surge in NYC. The majority (82%) required assistance from a family member and/or paid caregiver to complete the visit. Among patients who had not used telehealth, providers deemed 27% (n = 153) "unable to interact over video" for reasons including cognitive or sensory impairment and 14% lacked access to a caregiver to assist them with technology. Physicians were not knowledgeable of their patients' internet connectivity, ability to pay for cellular plans, or video-capable device access., Conclusion: The COVID-19 pandemic resulted in a large and dramatic shift to video-based telehealth use in home-based primary care. However, 4 months into the pandemic a majority of patients had not participated in a video-based telehealth encounter due to a number of barriers. Patients lacking caregiver support to assist with technology may benefit from novel approaches such as the deployment of community health workers to assist with device setup. Physicians may not be able to identify potentially modifiable barriers to telehealth use among their patients, highlighting the need for better systematic data collection before targeted interventions to increase video-based telehealth use., (© 2021 The American Geriatrics Society.)

Objective: To assess primary care teams' perceptions of a health information exchange (HIE) event notification intervention for geriatric patients in 2 Veterans Health Administration (VHA) medical centers., Materials and Methods: We conducted a qualitative evaluation of an event notification alerting primary care teams to non-VHA hospital admissions and emergency department visits. Data were collected through semistructured interviews (n = 23) of primary care team physicians, nurses and medical assistants. Study design and analysis were guided by the Consolidated Framework for Implementation Research (CFIR)., Results: Team members found the alerts necessary, helpful for filling information gaps, and effective in supporting timely follow-up care, although some expressed concern over scheduling capacity and distinguishing alerts from other VHA notices. Participants also suggested improvements including additional data on patients' diagnosis and discharge instructions, timing alerts to patients' discharge (including clear next steps), including additional team members to ensure alerts were acted upon, and implementing a single sign-on., Discussion: Primary care team members perceived timely event notification of non-VHA emergency department visits and hospital admissions as potentially improving post-discharge follow-up and patient outcomes. However, they were sometimes unsure of next steps and suggested the alerts and platform could be streamlined for easier use., Conclusions: Event notifications may be a valuable tool in coordinating care for high-risk older patients. Future intervention research should explore the optimal amount and types of information and delivery method across sites and test the integration of alerts into broader care coordination efforts., (Published by Oxford University Press on behalf of the American Medical Informatics Association 2021.)

Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

Objectives: Approximately 7.5 million US adults are homebound or have difficulty accessing office-based primary care. Home-based primary care (HBPC) provides such patients access to longitudinal medical care at home. The purpose of this study was to describe the challenges and adaptations by HBPC practices made during the first surge of the COVID-19 pandemic., Design: Mixed-methods national survey., Setting and Participants: HBPC practices identified as members of the American Academy of Homecare Medicine (AAHCM) or participants of Home-Centered Care Institute (HCCI) training programs., Methods: Online survey regarding practice responses to COVID-19 surges, COVID-19 testing, the use of telemedicine, practice challenges due to COVID-19, and adaptations to address these challenges. Descriptive statistics and t tests described frequency distributions of nominal and categorical data; qualitative content analysis was used to summarize responses to the open-ended questions., Results: Seventy-nine practices across 29 states were included in the final analyses. Eighty-five percent of practices continued to provide in-person care and nearly half cared for COVID-19 patients. Most practices pivoted to new use of video visits (76.3%). The most common challenges were as follows: patient lack of familiarity with telemedicine (81.9%), patient anxiety (77.8%), clinician anxiety (69.4%), technical difficulties reaching patients (66.7%), and supply shortages including masks, gown, and disinfecting materials (55.6%). Top adaptive strategies included using telemedicine (95.8%), reducing in-person visits (81.9%), providing resources for patients (52.8%), and staff training in PPE use and COVID testing (52.8%)., Conclusions and Implications: HBPC practices experienced a wide array of COVID-19-related challenges. Most continued to see patients in the home, augmented visits with telemedicine and creatively adapted to the challenges. An increased recognition of the need for in-home care by health systems who observed its critical role in caring for fragile older adults may serve as a silver lining to the otherwise dark sky of the COVID-19 pandemic., (Copyright © 2021. Published by Elsevier Inc.)

Purpose: Older adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience., Methods: Using data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving)., Findings: About one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (-0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33)., Implications: The provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background/objectives: COVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide., Design: Cross-sectional qualitative design using semi-structured interviews., Setting: HBPC practices in the NYC metro area during spring 2020., Participants: HBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices., Measurements: Semi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach., Results: Participants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients., Conclusion: NYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges., (© 2020 The American Geriatrics Society.)