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Background/Purpose: Patients with Glioblastoma Multiforme (GBM) have complex care needs and poor prognoses, which places their caregivers at risk for existential distress and psychopathology. Many caregivers seek support in coping with this role;the COVID-19 pandemic further exacerbated caregiver distress and the demand for caregiver support services. The purpose of this study was to examine how psychosocial service use and barriers to use relate to existential distress, anxiety, and depression. Method(s): This study was part of a RCT examining Meaning-Centered Psychotherapy among 60 distressed caregivers of patients with GBM. At baseline, caregivers reported use of psychosocial services and barriers to seeking those services. Additionally, participants completed measures of meaning, existential distress, spiritual wellbeing, anxiety, depression, and caregiver burden. We descriptively analyzed use of healthcare services, prevalence and intensity of barriers to seeking support, and investigated their correlations with outcome measures. Result(s): The most common service endorsed was psychotropic medication use, with 29.3% of caregivers reporting using medications to cope, and it was the only service associated with significantly lower personal meaning and spiritual well-being, and higher anxiety. Of the barriers reported, difficulty finding support (46.4% endorsed), lack of time for support (35.1% endorsed), and caregiving responsibilities (33.9% endorsed) were the most common. Caregivers who endorsed difficulty finding support as a barrier had significantly higher levels of anxiety and depressive symptoms, lack of family support, and impact on schedule. Further, caregivers who reported higher perceived intensity of barriers had elevated levels of existential vacuum, anxiety, and depression. Conclusions and Implications: GBM caregivers often rely on psychotropic medication as a stopgap to manage distress, which may worsen existential distress and anxiety, likely because resources like talk therapy and support groups are inaccessible. These results underscore the need for expanded caregiver support services, and how barriers to these services may exacerbate existential distress and discourage caregivers.
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Parent‐focused interventions have been designed to provide training and support to caregivers who are essential in achieving positive outcomes for children with intellectual and developmental disabilities (IDD). In 2020, significant crises, including the COVID‐19 pandemic and continued racial tensions, profoundly impacted the livelihood of children with IDD and their families. Many ongoing efforts to address disparities among this population were halted temporarily and required further adaptations. Researchers adapted interventions and support to address the disparities impacting children with IDD and their families with limited guidance. We provide a descriptive case analysis of four parent‐focused interventions that responded to the global crises to continue serving children with IDD and their families. The four distinct programs were based on applied behavior analysis and naturalistic, developmental‐behavioral paradigms that were culturally adapted for families of young children with IDD from diverse cultural and socioeconomic backgrounds. We present the qualitative reports on the challenges and benefits that arose with adapting the four parent‐focused interventions for telehealth implementation. We focused specifically on adaptations made in recruitment and retention, instrumentation and measurement, research staff training, and intervention delivery. We synthesize our experience with challenges and solutions in adapting parent‐focused interventions for racially/ethnically and socioeconomically diverse children with IDD and their families. We conclude with recommendations for researchers and practitioners on methods for adapting parent‐focused interventions to address the significant health disparities that impact racially, ethnically, and socioeconomically diverse children with IDD and their families.
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BACKGROUND AND AIM: In response to the COVID-19 pandemic, multiple Canadian PICUs restricted presence to one caregiver. Though patients could receive support, sources of caregiver support were limited. We sought to examine caregiver support during PICU admission under restricted family presence policies. METHOD(S): We conducted a cross-sectional survey of caregiver experience with restriction policies in Canadian PICUs. Support, or lack thereof, emerged as a dominant theme. Hence, in this sub-study, open-ended questions were analyzed using inductive content analysis, focusing on the concept of support. Likert-scale questions related to being alone at a PICU bedside were summarized using descriptive statistics. RESULT(S): 250 respondents experienced restriction policies (Mean [SD] age 38.8[8.4] years;226[91%] primarily Englishspeaking;230[92%] post-secondary education;208[83%] in a maternal role). Of 187 responses referring to the most difficult aspects of RFP policies, 84 (45%) addressed lack of support. Respondents felt alone in facing the admission and its associated experiences (n=32). RFP resulted in unmet needs for: emotional/moral support (n=42);a specific person's presence (n=28);and respite (n=10). Lack of support impaired medical care, communication, and decisionmaking (n=23). Weighted for strength of agreement, the top situation in which respondents were alone and both wished for a support person (n=9, 81.8%) and felt it was traumatic being alone (n=6, 85.7%) was when their child died. Nonweighted, the highest agreement was when the child's condition worsened (n=99 [89.2%] "wanted support" and n=94 [87.8%] "it was traumatic"). CONCLUSION(S): Restricted family presence policies in PICUs limited caregivers' access to social support systems, resulting in unmet needs and traumatic experiences.
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Background: With COVID-19, online opportunities to support families living with dementia are becoming increasingly important. However, academic institutions are typically not prepared to develop and test online platforms. We present a case study to describe steps for creating an infrastructure to test an online platform, WeCareAdvisor (WCA). WCA provides caregivers disease education and tailored strategies to manage dementia-related behavioral symptoms using the DICE Approach. WCA was previously tested in a small, randomized trial demonstrating positive caregiver outcomes. To advance its evidence-base, WCA is being tested in a NIA-funded Stage III efficacy trial with a national sample of 326 caregivers. Method(s): To test WCA, an infrastructure in the academic institution had to be created to address HIPAA compliance, privacy considerations, integrate user and developer input, and support rigorous trial methodologies. Through key informant interviews and literature reviews, we established a six-step process: 1) Identifying and engaging key stakeholders (legal, Information Technology offices, research team, software company);2) Creating software development agreement with stakeholder input;3) Detailing scope of work and an oversight structure of software company, 4) Developing formal agreements with the software company, 5) Conducting security assessments with university IT offices;and 6) Establishing formal vendor status of the software company. This also necessitated new roles and responsibilities of research team members. Result(s): The six-step process was labor intensive, transpired over 12 months, and involved over 15 iterative meetings with investigators, project staff, and stakeholders. Careful coordination of stakeholders to provide practical and iterative guidance at each of the six steps was essential. Deliberations resulted in app store access, URLs and domains, and compliance and privacy statements reviewed and approved by various university offices, and then launching WCA on app stores for access by study participants. Conclusion(s): Researchers and academic institutions have varying levels of understanding and readiness to engage in infrastructure development to rigorously test online platforms. Our approach resulted in an effective infrastructure for testing WCA which can be used by other researchers. Development of an infrastructure requires new skills for investigators, engaging multiple stakeholders, appropriately budgeting for this activity, and allocating sufficient start-up time. Copyright © 2022 the Alzheimer's Association.
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Background: Multimorbidity is most prevalent in older adults and is associated with higher symptom burden, lower quality of life, increased functional decline, and caregiver burden that warrants holistic intervention. Continued rise in the prevalence of multimorbidity is expected, especially among older adults. The COVID-19 pandemic required that a co-design event with patients, family caregivers, and health care providers discussing their preferences surrounding multimorbidity management be virtual. Objective(s): To discuss the challenges of organizing a virtual co-design event. Method(s): A virtual co-design event was held using Health Insurance Portability and Accountability Act-compliant Zoom technology. Patients (age 55 or older and living with multimorbidity), family caregivers, and health care providers interviewed in a prior phase of the project were invited to the codesign event. Data regarding participants' disease trajectory and improvement priorities were collected. The experiences of the study team, including event facilitators, were used to identify challenges and opportunities. Result(s): Four male patients, two female health care providers, and seven facilitators participated in the event. Five improvement priorities were identified: (1) patient-provider relationship, (2) communication, (3) availability of resources, (4) caregiver support, and (5) care coordination and follow-up. Conclusion(s): Virtual events could be a valuable tool to get diverse groups of participants to provide input;however, the recruitment process and the technological literacy of some older adults pose challenges. Using a virtual platform requires consideration of participants' access to technology, their technological literacy, the use of innovative human-centered design, and the need for holding multiple events to yield comprehensive data. Recruiting more diverse groups of participants-e.g., groups that include family caregivers and female patients-is critical, as they may present different needs and outcomes..
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INTRODUCTION: Telehealth services are increasingly used to facilitate cancer survivorship care. Barriers including unreadiness, digital literacy, and access may be overcome with dedicated patient training programs. This study assesses experiences of educators and cancer survivors in a community-led telehealth training pilot program. METHOD(S): Individual semi-structured interviews with Cancer Awareness Network educators and patients conducted October 2021 to February 2022 were transcribed and analyzed in NVivo 12 using thematic analysis. RESULT(S): Participants include 6 educators (19 to 68 years old, 83% Black, 100% female) and 3 patients (60 to 85 years old, 100% Black, 67% female). Educators and patients found training acceptable, with successful techniques including repetition, encouragement, and demonstration followed by teach-back. Both endorsed increased confidence, and patients used telehealth without significant issues after one session. The COVID-19 pandemic was both a facilitator and barrier to training as it motivated patients to use telemedicine to avoid in-person visits but hindered in-person training. Other facilitators included family/caregiver support and provision of devices and WiFi. Patient-level barriers included apprehension, older age, limited digital literacy, old devices, remembering passwords, and WiFi setup. Organization/system-level barriers included interparty communication for training setup, participant recruitment, and knowledge of hospital-specific telehealth platforms. Suggestions included instructional videos, increased outreach, and follow-up for reinforcement. Conclusion(s): Telehealth training improves patient confidence and uptake using various teaching techniques. Future steps include program expansion and incorporation of suggestions. Training programs with supplemental resources are a feasible and seminal intervention for telehealth equity among cancer survivors with low digital literacy, increased age, and/or digital poverty.
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Background: Caregivers of persons with heart failure must manage high levels of patient health care utilization, treatment complexity and often unpredictable stressors associated with intermittent symptom exacerbations and mortality. Interventions have often focused on the needs of the person with HF, not the caregiver. Therefore, we developed an intervention using human-centered design to provide caregiver-targeted support for this population. Objective: Pilot test the feasibility and gauge initial effect size of the Caregiver Support intervention to improve quality of life (mental and physical), caregiver burden, and self-efficacy among family caregivers from baseline to 16 weeks. Methods: The intervention includes five individualized, nurse-led sessions over 10 weeks conducted remotely (due to COVID-19). Intervention components focus on 1) nature of caregiving, 2) life purpose, 3) co-development of an action plan to address caregiver goals to reduce caregiver burden and improve caregiver well-being, 4) exploration of social and community resources to support unmet needs, and 5) building a sustainability plan for addressing future caregiver needs. We tested our approach in a randomized waitlist control pilot trial (N=35) from August 2020 through March 2022. We calculated enrollment and retention rates, described acceptability, and computed intervention effect sizes from baseline to 16 weeks. Results: 35 out of 101 (35%) eligible caregivers enrolled and were majority female (93.3%), White (60%) and spousal caregivers (63.3%). Average age was 59.4 ± 16.6 years. Overall retention was 69%. All intervention participants completed the five core components, reporting high levels of satisfaction and acceptability of activities. Between-group effect sizes (n=21) at 16 weeks suggest improvement in the mental health component of quality of life, caregiver burden, and self-efficacy (effect sizes 0.88, 0.31, and 0.63, respectively). Conclusion: Caregivers found Caregiver Support acceptable and study methods were feasible, despite challenges to engaging during the COVID-19 pandemic. Findings provide foundational evidence that this person-centered behavioral intervention can contribute to enhanced caregiver outcomes.
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Introduction: Social determinants of health (SDH) affect health outcomes in hospitalized patients. A particularly vulnerable subset of hospitalized patients with poorer outcomes are admitted to the medical intensive care unit (MICU). However, SDH data are not routinely collected during MICU hospitalizations. Screening for SDH may allow for targeted interventions to improve health outcomes in MICU patients. This novel study integrated SDH screening into the ICU workflow and captured the impact of the COVID-19 pandemic. Methods: 582 patients admitted to a single center MICU from March 2019 to September 2021 were screened for SDH using a modified validated screening tool (One People) that was incorporated into the existing electronic health record (EHR). SDH including food insecurity, utilities, transportation, housing, caregiver support, medication access, and insurance status were evaluated, in the pilot phase by research staff, followed by a dedicated social worker. Data analysis was performed using MATLAB and R version 4.0.3. Patient demographics, SDH incidence, strength of association between individual SDH, and changes in SDH pre- and post- first wave of COVID-19 were assessed. Results: Patients overall reported problems with food insecurity (8.2%), utilities (7.4%), transportation (11.5%), housing instability (11.2%), caregiver support (15.8%), access to medication (9.1%), and insurance (16.0%). More patients reported issue with medication and utilities access prior to COVID-19 (p<.01). Following the pandemic first wave there was an increase in caregiver support needs. Patients who reported problems with food insecurity, utilities, housing, and access to medication (p < 0.05) were younger and more likely to have Medicaid. Each SDH was correlated (p < 0.05) with another determinant;the strongest relationship was between food insecurity and utility issues (r = 0.58). Discussion: This is an ongoing study introducing screening for SDH in the MICU setting. Our results show how an SDH screening process can capture the diverse composition and changing needs of this patient population, particularly in response to environmental changes such as the COVID-19 pandemic. Strikingly, there was an increase in patients' need for caregiver support following the pandemic. This data can be harnessed for targeted interventions that address the root causes of ICU presentations and readmissions, leading to improved health outcomes and reduced spending.
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Increased cancer prevalence and survival rates coupled with earlier patient discharges from hospitals have created a greater need for social support. Cancer care is both short term and long term, requiring acute treatments, treatments for remission, and long-term screenings and treatment regimens. Health care systems are already overwhelmed and often struggle to provide social support systems for everyone. Caregivers are limited in number, and even when they are available, they often lack necessary information, skills, or resources to meet the needs of patients with cancer. The act of caregiving presents various challenges, and caregivers themselves often need social support as well. Despite these needs, most social support programs are targeted toward patients alone. Given the prevalence of cancer and known needs of these patients and their caregivers, the ability to identify those who need social support is crucial. Further, the scalability and overall availability of social support programs is vital for successful patient care. This paper establishes the benefits of social support for both patients and caregivers coping with cancer treatments, explores innovative ways of identifying patients who may need social support using digital tools, and reviews potential advantages of digital social support programs.
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Background/aims: Impact of the federal government's restrictive lockdown (LD) policies on inpatient hospice (IH) and palliative care (PC) teams. To track challenges for and solutions of IH and PC providers during the LDs in Germany. Methods: Semi-structured expert interviews with 12 hospice and PC experts to develop themes for a nationwide survey. Qualitative data were coded thematically, quantitative survey data were analysed descriptively. Results: A total of 37% (adjusted n=216) of PC units (n=102), IH (n=86) and hospital PC support teams (n=28) participated in the survey in 02/2021. Restructuring took place in all facilities surveyed. Some PC units were closed or relocated into other units during the 1st LD, resulting in decreased admissions and financial imbalances. Follow-up care was (very) difficult to organise for 70% of PC units/hospital PC support teams. For IHs, building structures made it difficult to set up areas for quarantine or isolation. Saying farewell to dying patients infected with SARS-COV-2 was not possible in 34%/24% of PC units during the 1st/2nd LD. Saying farewell to noninfected deceased was allowed with restrictions. Alternative memorial rituals included memorial walks, joint devotional hour in different locations. Visiting restrictions were a particular challenge for staff (78%/2nd LD). Loss of family caregiver support was a huge burden (PC units 66%/2nd LD, IH 58%/2nd LD). Teams were extremely burdened by observance of distance rules, loss of closeness to patients and their relatives, lack of time for rituals, and increased work constraints. Conclusions: LD policies and legislation had a great impact on care provision. Many facilities found solutions to live their approach despite the restrictions.
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There is increasing interest in the use of technology to support social health in dementia. The primary objective of this systematic review was to synthesize evidence of effectiveness of digital technologies used by people with dementia to improve self-management and social participation. Records published from 1 January 2007 to 9 April 2020 were identified from Pubmed, PsycInfo, Web of Science, CINAHL, and the Cochrane Central Register of Controlled Trials. Controlled interventional studies evaluating interventions based on any digital technology were included if: primary users of the technology had dementia or mild cognitive impairment (MCI); and the study reported outcomes relevant to self-management or social participation. Studies were clustered by population, intervention, and outcomes, and narrative synthesis was undertaken. Of 1394 records identified, nine met the inclusion criteria: two were deemed to be of poor methodological quality, six of fair quality, and one of good quality. Three clusters of technologies were identified: virtual reality, wearables, and software applications. We identified weak evidence that digital technologies may provide less benefit to people with dementia than people with MCI. Future research should address the methodological limitations and narrow scope of existing work. In the absence of strong evidence, clinicians and caregivers must use their judgement to appraise available technologies on a case-by-case basis.
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Older people and their families were particularly affected during the COVID-19 pandemic in 2020, but not much is known about the context of the Arctic regions of Russia. In this study, we identified the changes in family care before and during the pandemic using a questionnaire for the informal caregivers of older people. We investigated how and to what extent the pandemic has affected the relationships between caregiver and older person, and how the mental and physical health of older people and caregivers were affected by self-isolation in the Arkhangelsk region of Russia. The pandemic has changed the contribution of care from various actors: the share of care by charities, churches, and other aid agencies increased, while that of municipal services decreased. Sixteen percent of female and forty percent of male caregivers informed the study that COVID-19-related restrictions led to deterioration in the health of older people cared for at home. Family caregivers' own health worsened, especially mental health: 28% of caregivers reported aggravated stress during the COVID-19 pandemic and expressed various fears. Our data show that the main resources in overcoming the period of self-isolation have been telephone communication, personal contact, reading/music, friends, as well as the help of social services and maintaining a positive attitude.
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COVID-19 , Aged , Aged, 80 and over , Arctic Regions , COVID-19/epidemiology , Caregivers , Female , Humans , Male , Pandemics , SARS-CoV-2ABSTRACT
BACKGROUND: Multiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care. METHODS: We searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic. RESULTS: We included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs. CONCLUSION: The COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.
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Background and Aims: The ongoing coronavirus disease 2019 (COVID-19) pandemic caused by severe acute respiratory syndrome coronavirus (SARS-CoV)-2 is having unprecedented effects in healthcare systems, economies and society [1]. Although the respiratory tract is the primary target of SARS-CoV-2, emerging evidence suggests that the virus may also invade the central nervous system (CNS), leading to numerous neurological issues [2]. In particular, people with Alzheimer's disease (AD) are vulnerable group at risk of contracting COVID-19 and present more severe forms and worse outcomes. Social isolation measures (e.g., visitation bans, stay-at-home orders, and lockdowns in care facilities), which are necessary for controlling the spread of SARS-CoV-2 and reducing thus the disease transmission, could cause an imbalance in the lifestyle and mental health, increasing the risk of hospitalization and mortality for people suffering from AD [3]. This situation can cause a wide range of psychological and clinical problems, such as agitation, anxiety, irritability, delirium, aggressiveness, depression and sleep disorders that may contribute to the acceleration of neurodegenerative processes. Given the high prevalence of AD individuals affected by COVID-19, the present review provides an updated overview on published literature on the psychological impact of COVID-19 pandemic in patients affected by AD. Methods: A literature search was conducted in accordance with the PRISMA guidelines. PubMed database in English language was searched for publications before 6st April 2021 using the keywords: “Alzheimer's disease” AND “COVID-19” AND “psychology”. Reviews, clinical studies and meta-analyses were also included with no geographic limitations. All fields were selected and no other filters were applied. Results: A total number of 83 published manuscripts were included (67 research articles, 14 reviews, 1 clinical study and 1 meta-analysis). As expected, the majority of AD patients were women. Interestingly, a general function and cognitive decline has been often observed in demented subjects, leading to an impaired performance in activities of daily living. In regard with the most frequently reported behavioral symptoms related to social distancing, AD patients presented increased mood, sadness, apathy, agitation, hallucinations, anxiety, irritability, sleep disorders such as insomnia or sleep-wake cycle alterations. In addition, these symptoms were greater in patients affected by moderate or severe AD. Conclusions: Current literature reported an increased burden of behavioral symptoms in the majority of AD patients, suggesting a complex and bidirectional relationship with COVID-19. These symptoms were probably triggered by deprivation or reduced social contact, loneliness during the lockdowns, decreased daily activities, lack of physical contact with family members. In turn, an impaired cognitive performances may exacerbate mental health concerns in these patients, which may accelerate the neurodegeneration in AD patients. Therefore, during and after the pandemic, implementation of caregiver support, the presence of skilled nursing home staff or the implementation of new technology solutions are essential to maintain social interaction and to provide adequate support to people suffering from AD. No conflict of interest
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Background: The management of acute myeloid leukemia (AML) patients usually requires long inpatient treatments that can affect the limited care facilities, the quality of life, and increases healthcare costs. Additionally, leukemia treating centers in developing countries face limited sources to deliver high-dose chemotherapies as inpatient treatments. Therefore, several reports have established the feasibility and safety of outpatient consolidation. We aimed to implement a high-dose cytarabine outpatient program for AML in a limited-source institution at a public center in Peru.Methods: We conducted a prospective pilot study starting in January 2019 and ending before the COVID-19 Pandemic in March 2020. Eligible patients were ≥ age 14, met inclusion criteria for inpatient induction regimens, were without active infection, and had the following: normal chest x-ray and biochemistry, complete remission after one cycle of 7+3 induction. Logistical requirements included a 3-hours distance residence near the treatment center, caregiver support, trained nursing staff, infusion room capacity, and participation in follow-up. Patients received prophylactic antimicrobials such as oral levofloxacin, fluconazole, and acyclovir and were admitted to the hospital for predetermined complications of therapy (fever, G3-4 toxicity, febrile neutropenia, bleeding or refractory thrombocytopenia). Risk stratification was based on conventional cytogenetics and multiplex PCR using Leukemia.net criteria. Results: Forty-two patients were included during the study period. The median age was 38 years (16-63) and Female/Male ratio 4:3. According to Leukemia.net, 24% were classified as high, 50% intermediate and 26% as low risk group. Including FLT3 mutations in 26% of cases. Twenty-two and 20 subjects received 1-2 and 3-4 cycles of ambulatory HiDAC, respectively. About one-third of cases had emergency admissions during consolidation and 74% complete at least 3 cycles of cytarabine. Only 4 patients underwent sibling-donor allo-SCT. Sixty-four percent experienced relapses, and at 2 years follow-up only 21 subjects were alive. Median OS was 15 months, a better survival was shown among patients who received 3-4 cycles of ambulatory HiDAC (2-year OS 18 vs 23%, p=0.031). Conclusion: Our pilot study shows the feasibility to deliver HiDAC as outpatient consolidation in selected AML cases in a limited setting. Additionally, a high rate of relapses and poor survival was noted in our cohort that requires further consideration. Disclosures: No relevant conflicts of interest to declare.
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Caregivers of people with Alzheimer's and related dementias (ADRD) require support. Organizations have pivoted from traditional in-person support groups to virtual care in the face of the COVID-19 pandemic. We describe two model programs and their pragmatic implementation of virtual care platforms for ADRD caregiver support. A mixed methods analysis of quantitative outcomes as well as a thematic analysis from semi-structured interviews of facilitators was performed as part of a pragmatic quality improvement project to enhance delivery of virtual support services for ADRD caregivers. Implementation differed among individual organizations but was well received by facilitators and caregivers. While virtual platforms can present challenges, older adults appreciated the strength of group facilitators and reported enhanced connectedness related to virtual support. Barriers to success include the limitations of virtual programming, including technological issues and distractions from program delivery. Virtual support can extend outreach, addressing access and providing safe care during a pandemic. Implementation differs among organizations; however, some elements of virtual support may be long-lasting.