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The Women Working To Solve The Home Health Caregiver Crisis

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The caregiver crisis in the US extends well beyond those caring for young children. In fact, some of the systemic issues that impact the childcare crisis are the same that plague the eldercare and home health worker industry. While 75% of older adults have said they prefer to receive care at home, there’s no centralized infrastructure set up to do this.

Meanwhile, one in six home health care workers lives below the federal poverty line and more than half rely on some form of public assistance. The 2.3 million home care workers in this country earn a median hourly wage of $11.52 and about $16,200 annually.

The home health crisis impacts not only a vulnerable workforce, but the patients and families who find themselves navigating complicated logistical and emotionally fraught issues as they attempt to find long-term care for their loved ones.

That’s why a number of medical professionals are working to address these issues, among them internist and Weill Cornell’s health services researcher Dr. Madeline Sterling. Sterling works with adults who suffer from chronic conditions. The main focus of her research is to find ways to empower the home health aide workforce while improving patient care.

“Family caregivers are stressed and overwhelmed,” says Sterling. “They are trying to care for their loved ones or trying to navigate the process of getting them the care they need. We also have a workforce that is woefully underpaid and undervalued. Patients are left to fall through the cracks, either staying at home without necessary medical supervision or constantly being hospitalized.”

People over 65 have a 70% chance of needing some type of long-term care services in their future. While Medicare covers home care for seniors, it is generally for limited periods of time, so families are often forced to supplement care with private home health aides. Medicaid actually does provide long-term health care coverage, but there are strict income requirements. To exacerbate the situation, there is currently a home health provider shortage.

Despite a growing need, there doesn’t seem to be much of a focus on the people actually doing the caregiving when it comes to home health aides.

“This is not low skilled work,” Sterling says. “And if we don’t do a better job of recruiting and retaining workers, we will not be able to meet caregiving needs of our rapidly aging population.”

Sterling’s team surveyed over 800 home health aides and found that one of the constant themes that came up with the lack of training in heart failure care, such as monitoring and managing patients’ symptoms. So the team designed and piloted a heart failure training course for home health aides.

“The focus of the course is to improve the effectiveness of home health aides, who are such an overlooked and undervalued group of healthcare professionals,” Sterling says. “While this work is designed to empower them to provide high quality care, we have a host of other studies aiming to improve the visibility of the workforce and their perceived value in healthcare and society.”

This training helped Denise Glenn, a home health worker who recently completed the course, recognize the symptoms of heart failure in her patient. “I had a recent scare with my client when I arrived at work one Monday morning,” she said. “Their skin looked wilted, felt clammy, and vital sign measures were not normal. Learning how to observe symptoms better, I knew my client was in the red zone and needed medical attention. I called 911 and the EMT told me I saved my client’s life that day.”

Glenn believes more education and training for home health workers would improve their confidence in identifying key health issues in patients. Morale also increases when workers feel invested in, valued and rewarded.

Sterling’s team is currently in the midst of a clinical trial, which is testing the impact of their training course on workers and their patients.

Dr. Megan Shen is another medical professional trying to address this crisis by making the process easier on patients and families. As a social psychologist and behavioral science researcher at Seattle’s Fred Hutchinson Cancer Center, her research focuses on developing support tools to help patients with serious illnesses and their loved ones plan for the type of healthcare they need as the severity of their illness progresses.

Together with her team, she created a tool that is easy to understand, walks patients through the process of advance care planning, and directly integrates their loved ones into the process.

“Making difficult healthcare decisions often leaves families with complex emotional distress,” she says. “There is a serious need for someone to work alongside patients and their families to help support them psychologically but also practically through this period. Wouldn’t it be great if someone could guide them through all the processes and options to help them get their loved ones the care they need, from at home care to hospice and palliative care.”

“This may sound surprising, but I was inspired by TurboTax,” Shen says. “That software is perfect at empowering people to engage in a complicated task that is necessary but one that we all want to avoid ⎯ doing our taxes. I was also inspired by the fact that most of us make major decisions by getting feedback from our loved ones and others in our social network.”

Planning Advance Care Together (PACT), combines these elements to make the task of advance care less daunting. It also offers the capability to integrate and share these documents with loved ones. There are animated videos describing the logistics of setting up care while offering prompts to help families have difficult conversations about it. There’s also a questionnaire that patients fill out to auto-complete their advance directive and health care proxy forms.

“I presented my work to oncologists serving in community-based clinics focused on under-resourced patient populations,” Shen says. “There is power in designing and developing easy-to-access tools that can reach most patients and walk them through a traditionally overlooked but necessary planning process.”

Shen’s team is also conducting a clinical trial of this tool to test its impact on patients and their caregivers.

“The current home care landscape is broken,” says Sterling. “Older adults and those with serious conditions and disabilities prefer to stay at home. And yet, there is insufficient funding and infrastructure in place to meet their needs. Workers are struggling too. Providing day-to-day care all while living below the poverty line. Action from policy makers is desperately needed.”

Sterling’s team actually has been approached by policy makers at a state and federal level who are interested in applying some of the insights from their work on a broader scale. Sterling and Shen’s hope is that their work will be just the start in addressing an issue that will impact such a large percentage of the population. But in order to serve the needs of both the healthcare workers and the patients and families they serve, both agree that the industry needs a major overhaul, specifically around awareness, innovation and systemic change at the federal level.

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