key: cord-0820068-yq4957pf
authors: Xu, Emily; Kim, Patricia; Zhang, Meng; Reckrey, Jennifer; Ornstein, Katherine; Franzosa, Emily
title: “I Depend on Her for Everything”: Characterizing the Role of Home Care Workers Caring for Seriously Ill Homebound Older Adults During the COVID-19 Pandemic Through a Mixed-Methods Study (RP419)
date: 2022-06-30
journal: Journal of Pain and Symptom Management
DOI: 10.1016/j.jpainsymman.2022.04.060
sha: 001705e463e199d0cd867d7cf294c0abd27f949f
doc_id: 820068
cord_uid: yq4957pf

Outcomes 1. Illustrate the role of home care workers (HCWs) in caring for homebound older adults during COVID-19 2. Characterize disruptions in HCW services in the setting of COVID-19 and how these impacted the ability of patients to stay safely at home 3. Identify the impact of HCW services on patients and their family and other unpaid caregivers Importance The devastating impact of the COVID-19 pandemic has made the need for quality home-based care for homebound older adults with serious illness clear. Home care workers (HCWs) played a critical role in keeping homebound older adults safely at home during COVID-19, yet their essential work is often undervalued and understudied. Objective(s) To illustrate the roles of HCWs during COVID-19 and how HCW service disruptions impacted patients and their caregivers. Method(s) We collected demographic and clinical data and performed a thematic analysis of medical records from 53 patients with HCWs in a home-based primary and palliative care practice in New York City. We abstracted unstructured clinical notes between 12/1/2019 and 12/31/2020 into a priori and emergent categories and identified core themes via discussion in team meetings. Results Of the 53 patients, 24.5% died during the initial COVID surge, 34% lived alone, and 41.5% had 24-hour HCWs. The following five themes emerged: Changes to HCW roles included taking on new medical tasks and increased intensity of existing tasks (e.g., managing progressing dementia behaviors); delays in staffing contributed to changes in HCW hours and continuity, including unexpected loss of services; disruptions in HCW services put patients at risk of hospitalization and nursing home placement due to safety concerns; payment structure and patient preferences made it challenging to get sufficient hours of paid care; and lack of adequate and high-quality HCW services created additional caregiver responsibilities and caregiver burden. Conclusion(s) During COVID-19, HCWs were essential to keeping homebound older adults safely at home. Inadequate HCW services, including unstable schedules and inadequate hours of paid care, became particularly disruptive, leading to risk of hospitalization and prolonged length of stay. Impact This analysis can inform policies encouraging better integration of HCWs on medical teams and addressing workforce shortages to expand access to adequate HCW services for homebound older adults and their caregivers to manage serious illness and end-of-life care.

Objective(s). To describe the prevalence, potential risk factors, and consequences of aggression toward caregivers in PDRD. Method(s) . This is a convergent, mixed methods study of 291 PDRD patient-caregiver dyads from a clinical trial of outpatient palliative care integrated into routine neurologic care. The primary outcome for quantitative analysis was caregiver-reported aggression. Spearman partial correlations of demographics, measures of disease, and dyad characteristics identified associated variables, adjusting for age, sex, treatment group, and diagnosis. We simultaneously conducted semistructured interviews with 14 caregivers who reported aggression during the study, analyzing antecedents and consequences of behaviors through thematic analysis. Merging of data used a unidirectional, exploratory approach whereby qualitative themes were framed and enhanced by quantitative findings.

Results. Sixty-six (22.3%) caregivers reported aggression at baseline, with a 12-month incidence of 24.7%. Correlates of baseline aggression included patients' grief (r = 0.22, p < 0.001), motor symptom severity (r = 0.18, p < 0.05), confusion (r = 0.17, p < 0.01), resistance to care (r = 0.40, p < 0.01), caregiver depression (r = 0.16, p < 0.05), and caregiver burden (r = 0.34, p < 0.001). We identified qualitative themes of risk factors (patients' sense of loss as a reaction to disease burden; frustrations with motor symptoms; cognitive fluctuations; resistance to care related to shifting patient-caregiver roles) and consequences (detriments to caregiver mental health and caregiver burden). Conclusion(s). Aggression in PDRD is common, adversely affects caregivers, and is multifactorial, associated with both symptoms and psychosocial issues. Impact. Our findings suggest clinicians should screen for aggression, recognizing this may be sensitive and require time with caregivers. Future research is needed to develop behavioral interventions for aggression in PDRD that address patient factors while prioritizing caregiver wellbeing. Outcomes.

1. Illustrate the role of home care workers (HCWs) in caring for homebound older adults during COVID-19 2. Characterize disruptions in HCW services in the setting of COVID-19 and how these impacted the ability of patients to stay safely at home 3. Identify the impact of HCW services on patients and their family and other unpaid caregivers Importance. The devastating impact of the COVID-19 pandemic has made the need for quality home-based care for homebound older adults with serious illness clear. Home care workers (HCWs) played a critical role in keeping homebound older adults safely at home during COVID-19, yet their essential work is often undervalued and understudied. Objective(s). To illustrate the roles of HCWs during COVID-19 and how HCW service disruptions impacted patients and their caregivers. Method(s). We collected demographic and clinical data and performed a thematic analysis of medical records from 53 patients with HCWs in a home-based primary and palliative care practice in New York City. We abstracted unstructured clinical notes between 12/ 1/2019 and 12/31/2020 into a priori and emergent categories and identified core themes via discussion in team meetings. Results. Of the 53 patients, 24.5% died during the initial COVID surge, 34% lived alone, and 41.5% had 24-hour HCWs. The following five themes emerged: Changes to HCW roles included taking on new medical tasks and increased intensity of existing tasks (e.g., managing progressing dementia behaviors); delays in staffing contributed to changes in HCW hours and continuity, including unexpected loss of services; disruptions in HCW services put patients at risk of hospitalization and nursing home placement due to safety concerns; payment structure and patient preferences made it challenging to get sufficient hours of paid care; and lack of adequate and high-quality HCW services created additional caregiver responsibilities and caregiver burden. Conclusion(s). During COVID-19, HCWs were essential to keeping homebound older adults safely at home. Inadequate HCW services, including unstable schedules and inadequate hours of paid care, became particularly disruptive, leading to risk of hospitalization and prolonged length of stay. Impact. This analysis can inform policies encouraging better integration of HCWs on medical teams and addressing workforce shortages to expand access to adequate HCW services for homebound older adults 1. Understand the differential feasibility outcomes of delivering dyadic vs individual stress-management to family caregivers 2. Understand the differential efficacy outcomes of delivering dyadic vs individual stress-management to family caregivers Importance. The need for supportive care interventions for family caregivers is clear. However, it is unclear whether patient-caregiver dyadic or caregiverfocused intervention delivery is a more advantageous strategy. Objective(s). This pilot randomized controlled trial compared the feasibility and preliminary efficacy of a dyadic versus individual yoga intervention as a supportive care strategy for caregivers of patients with highgrade glioma. Method(s). Dyads were randomized to a patient-caregiver dyadic yoga (DY), an individual caregiver yoga (CY), or a usual care (UC) arm. The 15-session interventions were delivered either in person or via Zoom. All caregivers were assessed (quality of life [QOL], SF-36; caregiver burden) at baseline and 6 and 12 weeks later, with a subset completing qualitative interviews at 12-weeks. Results. We randomized 23 dyads to the DY, 22 to the CY, and 22 to the UC arm. Attendance in the DY was higher than in the CY group (session means, DY = 12.23, CY = 9.00; P = .06, d = .57). Caregivers (80% female; 78% non-Hispanic White; mean age = 53 years) reported significantly more overall subjective benefit in the CY compared to the DY arm (P < .05, d = 1.45). A clinically significant, medium effect size was found for improved QOL in favor of the CY over the DY group (P = .07; d = .67). Caregivers in the CY group also reported less caregiving-related health decline compared to the DY group (P < .05; d = .42). Caregivers in the CY group reported less caregiving-related financial burden than the UC group (P = .08; d = .35). Qualitative findings suggest that caregivers in the CY group valued practicing yoga alone as doing something for themselves. Conclusion(s). Despite lower attendance, caregivers in the CY arm reported greater subjective overall benefit and experienced better mental QOL and less caregiver burden compared with those in the DY and UC comparison arms. An individual rather than dyadic delivery may be a superior supportive care approach for this vulnerable caregiver population. An adequately powered, larger efficacy trial is warranted. Impact. Family caregivers may need focused and individual attention apart from the patient's supportive care needs.

Progressive Isolation, Loneliness, and Support: The Social Experiences of Persons with Dementia and Caregivers (RP421)

Outcomes. 1. Understand lived experiences of isolation and loneliness of persons with dementia and caregivers over the illness trajectory 2. Understand unique experiences of loneliness experienced by caregivers for persons with dementia 3. Apply a framework for addressing loneliness and isolation among persons with dementia and caregivers Importance. Persons with dementia and their caregivers have known risks for loneliness and social isolation

We recruited persons with dementia (n = 9), active caregivers (n = 16), and bereaved caregivers (n = 15) through an academic memory clinic. Participants were purposively sampled to maximize heterogeneity of dementia types, severity, and life experience