Adlard understands what parents are going through when medical research is mentioned.

"Eighty percent of children with cancer are long-term survivors, which means 20 percent of children will die from their disease," she said.

"Children in Phase I clinical trials have relapsed multiple times and there's no chance for cure with conventional treatments. But we find parents are willing to do anything for their children, and in most cases opt to participate in Phase I studies," Adlard continued. "Like all research, Phase I clinical trials are approved by the hospital's Institutional Review Board (IRB) and the consent form clearly indicates that these agents have shown some efficacy in adults, that we don't know if it will help this particular child, but that it may help others in the future.

"At this point in their child's disease, parents still hold out hope for a cure, and also tend to show concern for other children with cancer," she added. "They believe that children who participated in past clinical trials offered their child a chance for a cure."

A Great Resource

Kim Kelly, BSN, RN, CCRN, patient safety officer at Disney Children's Hospital at Florida Hospital, Orlando, FL, said that organization's commitment to research in children is evident and ongoing.

"We're expanding our nursing research efforts right now, and our oncology unit is already an active member of the COG, conducting clinical trials," she said.

While researchers take pains to explain medical research in a parent-friendly manner, there's inevitably some information overload, Kelly said.

"Parents are given a lot of information so they can make an informed decision about having their children participate in clinical trials, and it's easy to forget or misunderstand what's been said," she said. "The Web site would be very helpful for parents to review information during the clinical trial or answer the questions that come up."

Kelly appreciates that the NIH Web site contains information in language that's appropriate for a lay audience without watering down the messages and accommodates various learning styles.

"The Web site is very understandable and easy to navigate," she said. "I like the way they offer a choice of watching and listening to the video of a nurse, physician, parent or child discussing a particular question or just reading the transcript beside the video clip."

Kelly and her colleagues are in the process of sharing the Web site with nurses at Disney Children's Hospital.

"We like to share information in a variety of ways to reinforce important messages," she said. "We may decide to share it with staff nurses in our educational newsletter, or send it to our nurses via email with the link embedded in the message. We might also include it as part of our weekly Energizers, which are short messages shared at the change of shift."

Since common questions about medical research in children are answered in short sections, clinicians can use the Web site to reinforce their own individualized teaching plan, Kelly said.

"A nurse can actually find the right section that's pertinent to the child's situation, then share it with parents and be comfortable that the information is accurate and timely," she said.

Sandy Keefe is a frequent contributor to ADVANCE.