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A girl holding a stethoscope to a doctor's shirt.

Linda Lindeke, a University of Minnesota nursing professor, urges her healthcare colleagues to let children's voices be heard when its time to assess the quality of care at their facilities.

Respect for the voice of children

By Amy Barrett

From eNews, February 6, 2008

When kids in a recent study were asked what they would do to improve the quality of health care at hospitals and clinics, some of the younger ones suggested "fix the name bands so they wouldn't scratch" and "have a circus area" while older ones said, "make it less childish" and "ideally there would be all individual bedrooms."

As children's hospitals expand and remodel across the country, they often seek expert advice on what color to paint the walls and what kind of technology to install to appeal to young patients. Unfortunately, what's missing in most of these discussions, according to University of Minnesota School of Nursing associate professor Linda Lindeke is input from an overlooked and valuable source--the young patients themselves.

"Children know best what comforts them when they're sick," says Lindeke, who has worked with children throughout her career. "In an effort to paint things the 'right' color--as defined by experts, perhaps--hospitals and clinics can miss what children are really saying they need."

As a result, Lindeke has led several efforts to demonstrate the benefits of including feedback from children in quality assurance processes at healthcare facilities.

Her research has been partially funded by the Densford Clinical Scholars Program of the University of Minnesota Katharine J. Densford International Center for Nursing Leadership. Through the Clinical Scholars Program, Lindeke teamed up in 2003 with Lauren Johnson, who works on special projects at Fairview Health Services in Minneapolis, to demonstrate the need for more input from children.

Lindeke and her research team focused on children in hospitals. With assistance from Miyuki Nakai--then a graduate student, now a faculty member at Aichi Medical University College of Nursing in Japan--they surveyed 120 children who were inpatients at a large Midwestern hospital. They asked children to describe the best thing about the hospital, the worst thing about the hospital, and what they would like to change about the hospital.

Predictably, the older children provided more specific insights and recommendations than the younger ones. Nevertheless, even the youngest respondents had valuable things to say. It was a five-year-old, for example, who called attention to the scratchy armbands.

Following the hospital study, Lindeke and Johnson surveyed 116 children and their parents on their satisfaction with ambulatory pediatric subspecialty care at two outpatient clinics. The child's version of the survey included 12 questions, such as "Were they nice to you?" "Did they let you make choices?" and "Would you tell your friends this is a good place to come if they are sick?" The parent version of the survey asked modified versions of the same questions--for example, "Were they nice to your child?" "Did they let your child make choices?" and so on. For each question, children and their parents were asked to rate the clinic on a scale of 1 to 5.

Lindeke and her colleagues--including several students--then compared the mean scores from the children with those from the parents. Although some of the responses were similar, parents rated the quality of care higher than their child did on 8 out of 12 questions, and some of the issues identified by children weren't mentioned at all by parents. Lindeke was not surprised. "The message of this work is, 'Listen to the kids,'" she says." Parents' views are not necessarily a proxy for what the kids would say."

"Children know best what comforts them when they're sick," says Lindeke.

She believes strongly that kids, like adults, have a right to express their opinions. "It doesn't mean we do things their way," Lindeke says, "but it means we know what they're thinking." Sometimes healthcare facilities will be able to use their suggestions and sometimes they won't, she explains, but the simple act of asking kids for input is a way of showing them respect.

Often, the solutions to problems identified by kids are neither complex nor costly. For example, since children commonly express fear of shots and other painful procedures, patients who don't need them should be told as soon as possible to reduce their anxiety. Likewise, when surveys show that children are frustrated when "they don't tell you when they'll do something," and when "the doctor just talks to my parents while I just sit there," healthcare providers can change their approach to be more inclusive.

Even when specific suggestions are too impractical to implement, knowing what kids are thinking allows healthcare staff to respond respectfully to their fears and pet peeves about visiting hospitals and clinics. For example, kids in one of the surveys complained that "people are always coming in the morning" and "sometimes they make you get up in the middle of the night."

While it may not be possible to eliminate the interruptions, explaining the need for them and acknowledging that the lack of privacy is frustrating shows kids that the adults at least understand and sympathize with how they feel.

The results of Lindeke's research are generating valuable discussion nationwide, and systemic changes are occurring at the facilities where the research took place. For example, not only are the scratchy arm-bands gone, but a children's advisory board has been established and meets quarterly to address care quality issues at the hospital.

An article about the importance of capturing children's voices for quality improvement, co-authored by Lindeke, Nakai, and Johnson and published in the September 2006 issue of The American Journal of Maternal Child Nursing, was named the MCN Research Article of the Year, based on its "outstanding scholarly attributes as well as clear applicability to clinical nursing practice."

Lindeke has also been presenting her findings around the country, urging health- care colleagues to let children's voices be heard. "We need to take every avenue we have to listen to them," she says.

The benefit of doing so is likely to improve not only the satisfaction, but also the health of their patients. As numerous studies have shown, when patients are treated with respect, they are more apt to be satisfied with their care.

So, hospitals and clinics genuinely interested in quality improvement should, in other words, spend less time with the color consultants and more time with the kids.