Hospital Focus Misdirected Toward Parents, Survey Suggests

Imagine if your hospital patient experience included imposing NBA-sized nurses in surgical scrubs, towering over your tiny frame, poking you with needles, flashing bright lights in your eyes, ripping Band-aids off your skin, and calling you "Sweetie" because they couldn't be bothered with learning your name.

That may well be the experience of many of the 3 million or so children and young adults who are treated each year in the nation's hospitals. Nobody knows for sure how many children and young adults feel this way about their hospital experience, however, because nobody is asking them.

Nancy Ryan-Wenger, RN, hopes to change that. The director of Nursing Research and investigator with the Center for Innovation in Pediatric Practice at Nationwide Children's Hospital in Columbus, Ryan-Wenger is the lead author of a survey and study that calls for giving children a voice in grading their hospital stay.

"Right now in pediatrics it's all about parent satisfaction," Ryan-Wenger tells HealthLeaders Media. "Every person deserves the best experience they can have in a hospital. We underestimate how children respond and how a hospital experience influences them for the rest of their lives. It is a formative experience that not every child has. They aren't paying the bills, but they are the patient."

"I hate to say it, but the trend toward service-oriented parents and family-centered care at pediatric hospitals has gone overboard with parent satisfaction and comfort. The child sort of gets left behind."

The study, conducted by an interdisciplinary team of researchers, shows that asking children about the nursing care they received can help evaluate and identify ways to improve that care.

The survey asked 496 children and youths between the ages of six- and 21-years old who were treated in a free-standing children's hospital two questions: 1) "What do you like most about your nurses and what they do for you, and how does that make you feel?"; 2) "What don't you like about your nurses and what they do for you, and how does that make you feel?" Ryan-Wenger said.

The responses were sorted into 18 categories of nurse behaviors, 12 that were regarded as positive -- such as "gives me what I need when I need it," "checks on me often," "talks and listens to me" and "is nice and friendly to me." These positive behaviors made the children feel cared about, safe, and happy. Six categories were regarded as negative -- such as "wakes me up" or "doesn't give me what I need when I need it", Ryan-Wegner said.

"What we didn't expect was 'checks on me often.' If we sat down as nurses and adults and ask what kids might say that wasn't one of them," Ryan-Wegner says. "It's important because what it said was it makes them feel safer and that the nurse cares about them."

"Parents mean well but they really cannot respond in the same way that their child would to the same kinds of questions. They don't always know what their children are thinking and feeling," Ryan-Wegner says.

One part of the survey asked parents to answer a question as they thought their children would. "Parents were totally off the mark," she says. For example, 33% of the children said they liked it when their nurses talked to them and listened to them, and that never made the parents' lists.

"They came up with other things that had more to do with the parent than the child. They even had trouble putting themselves in their children's place with the answer. Children mention negative things about their nurses causing them pain. Parents never mention pain."

The study is the first to specifically target hospitalized children and adolescents on the quality of their nursing care. It is also the first to evaluate children's perceptions of nurses' behavior for evidence of any disparities across demographic groups, Ryan-Wenger says.

The study was funded by the Robert Wood Johnson Foundation Interdisciplinary Nursing Quality Research Initiative. It will be published in the January 2012 issue of the Journal of Nursing Care Quality and is available now online.

Ryan-Wegner says she was not able to find patient questionnaires from pediatric hospital that were written for the patient rather than the parents.

"They refer to 'your child' and 'does the hospital staff make you feel comfortable. Did the staff inform you about your child's progress?' Stuff like that," Ryan-Wegner says. "I'm trying to promote the idea that children need to be asked about the quality of their care while they are receiving it, not two weeks later when their parents get a survey in the mail."

The good news, she says, is that any disconnect between children and their hospital experience can be quickly addressed. For example, Ryan-Wegner says hospitals should consider using their interactive patient care systems and intranet to ask children at least once a day about their experiences, positive and negative. "The nurses can look at those responses and managed the care accordingly."

Ryan-Wegner recommends putting a white board in patients' rooms to help children communicate their concerns. "It could be the Top 3 Things that you should know about me. For example, 'Don't call me Sweetie. Call me by my name,'" she says. "Little things that we might not think are important may be important to children. Why not tailor your care to things that are most important to them?"

Ryan-Wegner says a child's experience as a hospital patient could have lifelong implications. "Depending upon how positive or negative their hospital experience is, it may have an effect on their future, on their use of healthcare, even decisions about whether to go into healthcare or not."

"If you ask many nurses or physicians, they said they wanted to become a physician or a nurse because of a positive hospital experience. It may influence their own healthcare decisions in the future."