Looking at the Real Lives of Home Care Workers

CFAR | December 18, 2017 | by Geralyn Magan

A new research study led by the SEIU 775 Benefits Group will shed light on the “authentic experience” of home care workers by visiting, listening to, and observing one worker at a time. LeadingAge and the University of Wisconsin-Madison are partners in the study.

There are only 3 ways to truly understand the challenges facing home care workers in this country, according to Charissa Raynor, executive director of the SEIU 775 Benefits Group:

  • Visit workers at home to understand what is going on in their lives;
  • Ask them questions about issues they care about; and
  • Observe them while they work with older adults and people with disabilities.

Raynor knows what she’s talking about. She directs a Seattle-based organization that offers training, health and retirement benefits to more than 50,000 home care workers in Washington state. She’s also leading a new research study designed to shed light on the “authentic experience” of home care workers by visiting, listening to, and observing one worker at a time.

“We all understand that there is a coming care crisis, and we all understand that you need a competent, compassionate, committed home care workforce to help people stay at home, which is where they want to be,” says Raynor. “Home care workers are such an essential ingredient in our vision for what aging in place looks like. But we actually know so little about those workers and their real lives.”

LeadingAge and the University of Wisconsin-Madison (UW-Madison) are partners in the Benefits Group’s research, which is dubbed “Real Lives of Home Care Workers.” Dr. Robyn Stone, senior vice president of research at LeadingAge, and Dr. Barbara Bowers, associate dean for research in the UW-Madison Department of Nursing, are serving as principal consultants on the study, which is designed to go beyond “what we think we know about home care workers,” says Raynor.

“What we think we know is just the tip of the iceberg,” she says. “Our goal is to go much deeper and to find out what we don’t know.”

Interviews and Observations at Home and Work

The SEIU 775 Benefits Group is planning to use its extensive statewide database to recruit a representative sample of 100 home care workers who it plans to interview and observe over the next year.

Researchers will ask workers open-ended questions designed to shed light on the worker’s behaviors, needs and emotions. For example, study participants might be prompted to describe their worst day as a home care worker, to talk about a time when they may have felt afraid on the job, or to identify something they think people should know, but don’t know, about the work they do. There’s also a “magic wand” question that asks workers how they would improve home care jobs if they had the power to make changes.

Researchers will also be observing and taking photographs of workers in their work environments and in their homes, if the worker does not live with the client and agrees to the home visit.

“We try to be more like a fly on the wall to observe the home care worker in action,” says Raynor. “Observation is really important. People can tell you lots of things but it is extremely validating to see with your own eyes.”

Analyzing the Findings

Stone and Bowers helped the Benefits Group develop the survey instrument it will use during worker interviews. The two researchers will be conducting interviews and observations with home care workers in 2018, and will participate in the study’s qualitative analysis. That analysis will identify patterns that emerge during interviews and observations.

Some distinct patterns have already emerged from the 14 interviews completed to date by Benefits Group researchers, says Raynor. Those patterns reveal the challenges that workers encounter in 3 areas:

  • Boundaries: Workers have trouble setting reasonable boundaries between themselves and home care consumers, says Raynor. Interviewers have heard stories about home care consumers who call workers at home, and workers who provide food to consumers who don’t have enough to eat. An inability to set boundaries often prompts workers to leave their jobs, says Raynor.
  • Scope-of-practice: Some workers experience a “moral and professional tension” because they are prohibited by state law from administering medications, but they see each day that home care consumers are having trouble managing multiple prescriptions.
  • Abuse: Home care workers are often subjected to disrespect and verbal abuse from clients and client families.

The Real Lives of Home Care Workers research team will produce a final report featuring “highly applied insights” that the Benefits Group will use to refine its training programs, says Raynor. She hopes home care agencies, state and federal policy makers, and researchers will use the Real Lives findings to develop strategies aimed at strengthening and supporting the home care workforce.

“There is power in codifying the anecdotal experiences of home care workers through research,” says Raynor. “When we’re finished, we’ll have more than just a vague sense that something is not right. We will have a level of certainty about what is going on. And that is very empowering. We can trust the lived experience of these workers, and we can use that experience to make a difference.”