When the National Consumer Voice for Quality Long-Term Care (The Consumer Voice) surveyed home care consumers about what they do and don’t like about the care they are receiving, one thing came through loud and clear: they love their home care workers, and they want them to have better working conditions. Late last month, DCA’s Elise Nakhnikian talked to Consumer Voice Executive Director Sarah Wells about what her group learned about that crucial relationship.
Your report says you found “the same critical importance of workers to consumers” in home care as you did in nursing homes, when you surveyed residents there in 1985. Why are direct care workers so important to long-term care consumers?
In all long-term care settings, that personal relationship is so important. Good relationships between direct care workers and consumers—good communication and mutual caring—is often the main thing that makes things work in nursing homes. Those relationships are really, really important to a good outcomes.
But it seems that in home care, from what the consumers told us, workers are able to develop those relationships with consumers to an even greater degree. Being in that person’s home, being with their families, spending time with the person talking one-to-one is all very conducive to creating a really personal relationship. One consumer told us, “I’m able to sit and talk to my worker about my personal philosophy of life.”
You talk about how “the little things” in home care make a big difference for consumers, and are a big part of what they appreciate about their workers. Which of those “little things” got mentioned the most?
For consumers, the best thing would be being able to be independent and do things for themselves. But if that’s not possible, the second best thing is having a great home care worker who can do things the way you would like to have them done.
A lot of people talked about cooking and cleaning. One woman said she—like all of us—had become loyal to a particular brand of cleaning product that she used her whole life. The fact that she could ask the worker to use that product and the worker did made her comfortable. Even though she wasn’t able to do the cleaning herself, it got done the way she wanted. The worker was almost like an extension of her. Whereas if you go in a nursing home, you wouldn’t have a choice about the product used, and it might have a smell you weren’t used to.
We heard that a lot about cooking, too. Some consumers said they actually showed the worker, “Here’s how I make spaghetti. It’s a recipe that was passed down in my family from generation to generation, so let me show you how to make it.” In other words, it’s not just about getting to eat spaghetti when you want it, but having it cooked the way you want it done.
The report says “A rewarding element of this project was hearing from consumers and their many, many wonderful stories of dedicated workers who provide quality care and who frequently go above and beyond in their duties.” Can you give us an example?
Consumers talked about how a worker would pop over to the house over the weekend on her own time, just to check in and make sure they were doing well. Or a worker would bring some sort of food item to the house that the person really loves. You hear this a lot in nursing homes too.
And it was a two-way thing: The consumers were also really invested in their workers. They asked about their families. They were worried that they don’t earn much or don’t have benefits like health insurance and they have a family to provide for. One thing we hear a lot in advocacy work in nursing homes is that consumers fear retaliation if they speak up. In the home care setting, consumers had the same fear, but the fear wasn’t about retaliation aimed at them. They were afraid that if they spoke up, their worker might get penalized by the agency. And they said, “I care about that worker like a family member, and I don’t want to see them get hurt or reprimanded.”
That close bonding between consumers and workers is often seen as a bad thing. Why is that?
Home care agencies often tell the worker not to get too close, because there need to be professional and personal boundaries. But consumers told us, that just doesn’t work. These relationships form organically. Besides, it’s totally counterintuitive to try to prevent them, because better care—personal, individualized care—comes from developing a relationship.
That’s not to say that everyone wants to become best friends with their home care workers. Some people were more private, and were happy that they had workers that respected that. What we found is that a high-quality experience for the consumer involves allowing the consumer and the worker to determine their own relationship—not establishing hard boundaries but giving them flexibility. Some consumers said they felt like the worker was a daughter to them, while others were more private and had a strictly professional relationship with their workers.
It goes back to what we are always saying about putting the consumer in the driver’s seat. I was really pleasantly surprised by how much home care consumers already feel in control. They seem to feel comfortable saying, “Because this is my home, I get to set the ground rules.” And for a lot of consumers, that’s means having a very personal relationship with workers.
You also heard, over and over, that consumers wanted their workers to get better pay and benefits.
I think there were both practical and emotional reasons for that. On the emotional side, these people really care about the workers. They see they have big families. They see that they are often young people just starting out. They see that they are goodhearted, hardworking people, and they want them to get paid fairly.
On the practical side, consumers realize that higher pay and better benefits will attract more people to the job—higher skilled people who are more passionate about the work and who will stay longer. They knew that higher wages would lead to lower turnover, and that lower turnover is better for them. We heard loud and clear that the workers need to be adequately compensated. In fact, we made that one of our policy recommendations.
They also talked a lot about health insurance. I got the sense that a number of consumers had had conversations with their workers about that, and that lack of insurance was a real sticking point with a lot of the workers, something that even caused them to think about leaving the job.
One consumer talked about providing some assistance with child care. The need for paid sick leave came up, too.
They also wanted their workers to have more training, didn’t they?
There were a lot of requests for workers to be trained in more advanced medical care. Some of the consumers made the link that, if these workers had more training, not only would they provide better care but it would put them in a position to make more money, so they could keep that worker for a longer time.
Others suggested that, instead of having three or four kinds of workers come in to do three or four different things, why not train my home care workers to do more?
I experienced this in my own life recently. My mother-in-law was in home care at the beginning of this year, and the wonderful worker we had wanted to do more. I think it felt almost disrespectful to her that someone else had to come in just to change a bandage when she could easily have been trained to do that, and wanted to. Not being allowed to do that made her feel disempowered and discouraged.
Consumers understand that their home care workers could do more, and they want to give them that opportunity.