”In a way, the whole long-term care system is upside down,” says Celia Berdes, PhD, a gerontologist and sociologist at Northwestern University and director of research at Presbyterian Homes in Evanston, Illinois. ”The things that are the most important are the least valued, and the things that are the least important are the most valued.”

”All that care we’re giving is not documented in a chart, so it’s invisible. And it’s hard to distinguish between those who practice care in a caring way and those who do not. We’re not evaluated in those terms, except anecdotally — ‘Mrs. So-and-So really loves you.’ But that’s not part of the bureaucratic machine of care: It isn’t quantified, it isn’t measured, it isn’t valued, in some way. An aide is never asked to write down, ‘Today I was a friend to this resident.’ Yet that may be the most important thing anyone in that nursing home did that day — better than anything the nurses could do, better than anything the DON could do, better than anything a doctor could do.”

Berdes may work at a university, but she hasn’t forgotten what she learned from her years as a nursing assistant, an activities director, and an assistant administrator in nursing homes. Her research documents and attempts to measure those crucial but invisible parts of the long-term care process — the things that either facilitate or impede the delivery of true quality care.

Caring in the face of abuse

Berdes’ involvement with long-term care began when she was 14 and took a job as a candy striper in a nursing home, where she stayed on as a nursing assistant during high school. ”I was one of the few white people working there as an aide, and some of the aides would negotiate with me to take on the residents who were giving them a great deal of grief,” she says. ”It was racial abuse. So at an early age, the idea was planted that this happens.”

She also learned about the patience and understanding that allows many direct-care workers to remain caring, even toward abusive clients. ”That power of grace fascinates me,” she says. ”These were recent immigrants, many of them. Their English wasn’t that great, and we were thrown into this suboptimal caring situation, with no preparation, in a facility that didn’t support our caring, even with basics like soap and washcloths. And yet here they were, caring. That was something that really captured my interest, from a research perspective.”

Writing things in a chart makes them real

After graduating Duke University, where she studied with George Maddox, the renowned head of Duke’s aging center, she went to work as an activities director in a nursing home.

”I learned a lot about bureaucracy as an activities director,” she says. ”I had to write activities notes in resident charts, and I was given a set of stock phrases to use. I learned a lot about how care is translated into bureaucratic terms — how writing things in a chart makes things real and how things not written in a chart aren’t real.”

The American myth is merit

Berdes’ next job in long-term care was as assistant administrator at a Washington, D.C nursing home. ”There, I learned about the marginal situations that many aides are in — moonlighting, single parenting, substandard housing, substance abuse, problems with boyfriends,” she says. ”I’ve had a lot of education, and I’ve had a kind of sheltered life. I was in my late 20s and still childless and having a great time. I began to meet people my age who had grandchildren, and I didn’t even have any kids.”

”The American myth is that we earn things solely through our own merit,” she adds. ”In order to understand the structure of opportunity, you have to reject the myth of merit. And it humbles you — it’s hard to accept. It means that who you are is not just about who you are.”

”I began to understand the cyclical relationship between opportunity and choices — how the choices you make are a reflection of the opportunities you think you have. What it taught me about was the conundrum of career ladders. If you and I were in direct-care jobs, we’d be trying to become nurses. There’s a certain amount of ambition in who we are; we understand ourselves as women who have the right to self-actualize; someone’s behind us who can give us the address of the financial aid office and help us fill out the forms; we may have parents who pay for our educations. These folks didn’t have those things. It’s one thing to talk about career ladders and another to think about these folks’ perceptions of their options.”

Merging practice and research

This was also when the link between practice and research was forged for Berdes. Her employer was the teaching nursing home for Georgetown University, and she became the staff liaison between the university and the facility. ”I really started to get interested in research,” she recalls.

She went back to school, earning a doctorate in sociology with a dissertation that explored factors that promote and impede a sense of community in residential facilities for older people. Throughout that research, she says, ”An underlying question was: Are the people who work here part of this community? If not, why not?”

After earning her PhD, Berdes started to publish papers based on her dissertation.

She is currently researching two separate but related tracks: the work life of nursing assistants and the components of person-centered care.

”My first focus is to achieve a better understanding of what we call in sociology ‘the lived experience’ of being a nurse’s aide. I really want to get at the choices they make to be an aide, how they manage on the wages and in the conditions in which they work, what it means to be a caregiver at work and at home, what it means to be an immigrant providing elder care for Americans.

”I’m looking at this within the context of a field of study called ‘care work’ — work in which the product is a condition in other people. Mothering is care work; daughtering is care work. But there is formal care work, too. Teaching and nursing are forms of care work. There’s a growing network of researchers across this country who are trying to figure out what sets care work apart from work in general. When your product is a piece of plastic, you don?t have to love that piece of plastic. But when your product is old people, you do, if you want to give good care. And that caring has to be measured if it is to be valued.”

”Person-centered care” is the other term Berdes and her colleagues are trying to quantify. ”How are we going to measure this affective part of what we do?” she asks.

Her two subjects are, she notes, ”very closely related. One of the things I want to explore in the first study is, what do you know about person-centered care or affective care, and when other aides are giving it and when they’re not? I want to tap the wisdom of experienced nurses’ aides. It’s not that hard to get that knowledge: experienced aides carry it in their heads. But how do you codify it, and how do you create it as an expectation?”

The commodification of care

Berdes’ vision for long-term care research was inspired by many other researchers. She cites three in particular.

”Tim Diamond published a book, Making Gray Gold: Narratives of Nursing Homes Care, based on work he did as an aide here in Chicago,” she says. ”I think it’s the best thing ever written about aide work. Better than I will ever do, it makes the connection between the individual aide’s work and the larger systemic implications of that interaction. It’s basically about the commodification of care: What does that mean, both to the people providing it and the people receiving it, when care is a commodity we buy and sell?”

”I admire Barbara Bowers’ work terrifically, because she goes to the horse’s mouth: She went to nursing home residents and nursing assistants to find the answers to her questions. She’s a nurse, so she has that whole repertoire of understanding care. But she’s also a sociologist. I think her work is outstanding, really wonderful.”

”And Linda Noelker has long been a leader among people who do this kind of work — Most recently, she has focused on relationships between family members and nursing assistants, but her research has also been instrumental in drawing the connection between quality of care and quality of life. Linda has also been instrumental in getting qualitative research published. Many journals favor quantitative research, but you need qualitative research, like interviews and focus groups, as a foundation for quantitative research. Linda has been a leader in supporting qualitative research with nursing assistants and other key players in nursing homes.”

Five more things Berdes would like to look into

Ask Berdes what other aspects of direct-care work she’d like to see researched and you can all but hear the floodgates opening. At the top of her list:

• How to tap into what nursing assistants know about their clients’ conditions in order to alleviate pain;
• The impact of sleeplessness on care when direct-care workers take on extra shifts or work a second job to make ends meet;
• The high rate of on-the job injuries among direct-care workers — not just from lifts and transfers but from being attacked by the people they care for;
• A quantitative study to establish how many direct-care workers must contend with racism on the job; and
• How nurse aides learn what they need to know and get validation for a job well done. ”I think nurses are distracted by all the paperwork they have to do, so nurse aides are kind of out there on their own, and that must be worrisome for them. How do we recognize higher levels of expertise and tap that, so nurse aides can teach each other?”

Part of PHI’s Expert Interview Series.