“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)

https://doi.org/10.1016/j.jpainsymman.2022.04.060Get rights and content

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.

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