Sometimes painful medical procedures are necessary for children, but that doesn't make them any less traumatizing for the patients or their parents.
Researchers at University of Iowa Children's Hospital and the UI College of Nursing have devised a way to help: an application that can be accessed from parents' smart phones, tablets, or computers and used to distract children during procedures such as blood draws and immunizations.
But the UI's Distraction in Action app for children's pain is more than just a computer game.
The app leads parents and children through a series of questions designed to predict a child's risk for distress and prepares parents to effectively distract their child. Ultimately, the app customizes a distraction plan that recommends games and offers parents tips about how to help their child through the medical procedure.
The result is young patients who are less distressed and parents who are more involved.
"At UI Children's Hospital, we have child life specialists trained to provide distraction and help children through medical procedures; however, not every setting has this service," says Kirsten Hanrahan, a nurse scientist and pediatric nurse practitioner at UI Children's Hospital and member of the research team developing the app. "That is something our research has been focused on: helping parents to provide the distraction when there isn't a trained medical specialist to do it."
The UI research team recently finished a pilot project to fine-tune the app, which involved 20 children between the ages of 4 and 10 and their parents. Most families were recruited from the phlebotomy lab in the pediatric specialty clinic at UI Children's Hospital, where young patients were waiting to have blood drawn. Participants were handed an iPad loaded with the app and asked to follow the prompts.
The app uses the parents' and children's answers to generate an individualized "risk for distress" score for the child. The parent and health care provider then use that information to decide whether the parent should provide distraction coaching to the child or if a health care provider trained as a distraction coach should be brought in.
"We know that trained professionals usually provide higher quality distraction because of their experience, (but) our training increases the quality of parent distraction so that it is effective for most parents and most kids," Hanrahan says.
Parents were then given the choice to provide the distraction themselves or defer to a trained professional.
For Amy Bertling, of Worthington, the chance to participate in the pilot project was an opportunity to help her 7-year-old daughter, Cara, better cope with the pain of her third blood draw in less than a month. The first time, Cara received no help with her pain; the second time, Bertling tried to distract her daughter with no training.
With the help of Distraction in Action, Cara's third blood draw was a much better experience.
"She was very distracted and very focused on making cupcakes on the iPad. And she actually was telling people when we got home that that's what she did. She didn't talk about getting her blood drawn; she talked about playing on the iPad," Bertling says.
Once the pain app is finalized and formatted to be user-friendly, UI researchers hope to create a website by January 2017 so parents can access Distraction in Action on their mobile devices.
"Ideally, parents could access the Distraction in Action app the night before their child's medical procedure, answer the questions, and be prepared for distracting their child the next day," Hanrahan says.
Medical experts say children are among the most vulnerable to pain and the least likely to be adequately treated compared to other populations. According the American Academy of Pediatrics, most children require over 20 routine immunizations during childhood. Children who are sick require even more needle-stick procedures for diagnostic testing and therapies.
"We know that bad experiences with those procedures can cause increased pain sensitivity and avoidance of health care later in life," says Ann Marie McCarthy, a professor at the UI College of Nursing and lead investigator. "If we provide distraction, children are less likely to be traumatized and, as a result, less likely to experience long-term negative effects."
For more than 20 years, McCarthy, Hanrahan, and Charmaine Kleiber, an associate professor emerita at the UI College of Nursing, have been researching pain-mitigation methods that can work with or without the aid of medication.
It began in the oncology unit at UI Children's Hospital, where McCarthy and Kleiber watched children struggle through painful procedures. At the time, McCarthy, whose postdoctoral training was in pediatric psychology, began working with young patients and their families using guided imagery, toys, and deep breathing to help children keep their minds off the pain.
Eventually, they concluded that distraction was the most promising approach, both because it's effective and because it's a technique familiar to most parents.
"Think about when parents take their kids to a restaurant," Hanrahan says. "What do parents do until the food gets there? They distract the kids. Distraction for a medical procedure is more skilled, but we know we can teach parents to do it. For parents, distraction is comfortable because it's like playing with their child."
In the beginning, UI researchers used toys, books, and interactive games to distract children during painful procedures. They also learned that telling a child, "It's going to be OK," doesn't work.
"Imagine if you're a little kid and having a painful procedure and the person who has always been there for you is telling you, 'It's Ok,' but it's not OK," McCarthy says. "We saw children getting more and more upset. But parents who were natural distractors were able to bring their child's distress down."
To be effective, distraction techniques have to engage the child's attention. In recent years, computer games, books, and relaxation exercises for distraction have become popular.
Still, that wasn't enough. Researchers wanted a screening tool to identify parents and children in need of extra help with distraction or handling pain. How a child reacts to pain and a parent's ability to distract them are influenced by a number of factors, including the child's age, anxiety, temperament, and coping strategy, as well as the parent's anxiety, expectations, and parenting style.
So, with help of the UI's Tippie College of Business, researchers used data-mining techniques to examine information collected from 1,000 families. In the end, researchers identified 11 predictive items that they then crafted into questions on the UI pain app.
For example, parents are asked how distressed their child is during medical procedures and how their child usually copes. They also are questioned about their parenting style, among other queries. Children are asked about their pain sensitivity and whether they prefer to watch a painful procedure or to look away.
Once the parent and child are finished answering questions, parents watch a short teaching video and promptly receive a customized distraction plan for their child.
"One thing we have learned from parents is they want to help their children," McCarthy says, "and Distraction in Action can empower parents in the treatment room."
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