"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.

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.

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.

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.

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.

"I Am the Home Care Agency": The Dementia Family Caregiver Experience Managing Paid Care in the Home.

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.

The Experience of Homebound Older Adults During the COVID-19 Pandemic.

BACKGROUND: Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic. DESIGN/SETTING: Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA. PARTICIPANTS: A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020. MEASUREMENTS: Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts

Prospective assessment of dementia on transitions in homeboundness using multistate Markov models.

BACKGROUND: One in 20 older adults in the United States is homebound and rarely/never leaves home. Although being homebound decreases the quality of the lived experience of individuals with serious illnesses, little is known about the frequency or likelihood of transitions in or out of homebound status. The objective of this study was to characterize the probability of transitions to and from homebound status among older adults and examine the relationship between dementia status and homebound transitions. METHODS: Using 2011-2018 data from the National Health and Aging Trends Study (NHATS), a nationally representative longitudinal study of aging in the United States, we identified 6375 community-dwelling Medicare beneficiaries. Homebound status (independent, semi-homebound (leaving home but with difficulty or help), homebound (rarely or never leaving home), nursing home resident, dead) was assessed annually via self-report. Transition probabilities across states were assessed using a multistate Markov model. RESULTS: Less than half of homebound individuals remain homebound (probability = 41.5% [95% CI: 39.2%, 43.5%]) after 1 year. One out of four dies (24% [22.3%, 26.0%]) and there is a low probability (3.2% [2.5%, 4.1%]) of transition to a nursing home. Dementia status was associated with increased risk of progression from independence to homebound status (HR: 1.83 [1.01, 3.34]). Dementia was consistently associated with increased probabilities of transitions to death including a two-fold increased hazards of progression from homebound to death (HR: 2.18 [1.69, 2.81]). Homebound individuals with dementia have a 34.2% [25.8%, 48.1%] probability of death in 5 years, compared with 17.4% [13.7%, 24.3%] among those without dementia. DISCUSSION: Dementia is associated with greater risk of transitioning across homebound states. There is a greater need to support home-based care for patients with dementia, especially as the ongoing COVID pandemic has raised concerns about the need to invest in alternative models to nursing home care.

Barriers to learning a new technology to go online among older adults during the COVID-19 pandemic.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has highlighted the importance of using information and communication technology (ICT) to address daily and healthcare needs. The barriers for older adults in the United States to learn a new technology to go online during the pandemic remain to be studied. METHODS: Using data from the 2019-2020 National Health and Aging Trends Study (NHATS), a nationally representative survey of older Medicare beneficiaries aged 65 years and older in the United States, we used multivariable logistic regression models to identify sociodemographic and clinical factors associated with learning a new technology to go online during the COVID-19 pandemic. RESULTS: Our sample represented 23,547,688 older adults nationally, of which the majority (60.2%) increased ICT use during the COVID-19 pandemic. However, most older adults (71.8%) did not report learning a new technology to go online. Those who did not learn a new technology to go online had less of an increase in ICT use than those who learned either with help or by themselves (50.7% vs. 78.4% or 89.2% respectively, p < 0.01). The odds of learning a new technology decreased with increasing age (aOR [95%CI] = 0.96 [0.94-0.98]), being male (aOR [95%CI] = 0.56 [0.45-0.72]), having lower than high school educational attainment (aOR [95%CI] = 0.38 [0.29-0.50]), decreasing income levels (aORs ranged from 0.28 to 0.54), and self-reported fair or poor general health (aOR [95%CI] = 0.65 [0.47-0.90]). CONCLUSION: The identified sociodemographic and clinical factors could inform targeted intervention strategies to improve ICT use among older adults during the evolving COVID-19 pandemic and in the future.

"I felt useless": a qualitative examination of COVID-19's impact on home-based primary care providers in New York.

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.

Home-based primary care: A systematic review of the literature, 2010-2020.

BACKGROUND: Although more than seven million older adults struggle or are unable to leave their homes independently, only a small minority access home-based primary care (HBPC). Despite substantial growth of HBPC, fueled by growing evidence supporting positive patient outcomes and cost savings, the population remains dramatically underserved and many evidence gaps still exist around scope of practice and key issues in care delivery and quality. Understanding the current state of the field is critical to the delivery of high-quality home-based care. METHODS: We conducted a systematic search of the peer-reviewed literature on HBPC, published between January 2010 and January 2020, using Medline, CINAHL, Embase, Web of Science, and Scopus online libraries. All studies were evaluated by two members of the research team, and key findings were extracted. RESULTS: The initial search yielded 1730 unique studies for screening. Of these initial results, 1322 were deemed not relevant to this review. Of the 408 studies deemed potentially relevant, 79 were included in the study. Researchers identified five overarching themes: the provision of HBPC, the composition of care teams, HBPC outcomes, the role of telehealth, and emergency preparedness efforts. CONCLUSION: The need and desire for growth of HBPC has been highlighted by the recent COVID-19 pandemic. Current research on HBPC finds a diverse scope of practice, successful use of interdisciplinary teams, positive outcomes, and increasing interest in telehealth with many areas ripe for further research.

"There Is Something Very Personal About Seeing Someone's Face": Provider Perceptions of Video Visits in Home-Based Primary Care During COVID-19.

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.

Disruptions in Care and Support for Homebound Adults in Home-Based Primary Care in New York City During the COVID-19 Pandemic.

Homebound older adults are a highly vulnerable population, yet little is known about their experiences with healthcare during the COVID-19 pandemic. We interviewed patients in home-based primary care (HBPC) in New York City by telephone in May and June of 2020. Interviews covered social supports, household activities, self-care, and medical care, and asked participants to compare current with prepandemic experiences. Among 70 participants, 37% were Black and 32% were Hispanic. Disruptions in the home included greater difficulty accessing paid caregivers (13.9%) and food (35.3%) than before the pandemic, and unaddressed household chores (laundry, 81.4%; food preparation, 11.4%). Black study participants were more likely than White and Hispanic participants to report disruptions in accessing medical care (13 [50.0%] vs. 3 [14.3%] vs. 6 [27.3%], respectively, p = 0.02), as well as food preparation and medication taking. Black patients in HBPC are at risk of disparities in healthcare and social support during the COVID-19 pandemic.

COVID Challenges and Adaptations Among Home-Based Primary Care Practices: Lessons for an Ongoing Pandemic from a National Survey.

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.

Barriers to telehealth access among homebound older adults.

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.

"At Home, with Care": Lessons from New York City Home-based Primary Care Practices Managing COVID-19.

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.