Patient Education Specialists Help Patients and Families Find Answers in Confusing Times

LEXINGTON, Ky. (Dec. 4, 2019) ­– Tucked away in a corner of the lobby of the Kentucky Children’s Hospital, nearly out of sight, is an invaluable resource for families and visitors. It’s a place where parents can go for answers about their child’s diagnosis and where doctors and nurses can get information to help them communicate with their patients and families. It’s a place where parents, exhausted and overwhelmed by their child’s extended hospital stay, can sit in the quiet and reflect.

This is the Don and Cathy Jacobs Pediatric Health Education Center (HEC) at Kentucky Children’s Hospital. For parents struggling with a new diagnosis, the HEC is a center for information and research. A team of patient and family education specialists are available to help them find the information they need at a time when answers seem elusive.

Nikki Taylor is one such specialist. A registered nurse with an extensive background in pediatrics and obstetrics as well as nursing education, Taylor is available to help families find answers to questions they may not even know to ask.

“This space is here to provide patient education for patients, families, staff, visitors – anyone who's interested in getting more information about a health condition or safety or what's going on with their loved one or themselves,” said Taylor. “We also want to provide a place where they can come in and relax and have a nice setting to kind of get away from the bedside.”

One entire wall of the HEC is filled with education pamphlets and books, covering a number of topics from diabetes and congenital heart defects to caring for premature babies. Interactive models line the shelves so parents can get a visual understanding of what’s going on with their child. Computers, printers, scanners and fax machines are available for anyone to use, especially families who can’t leave the hospital but still need to get work done.

“This is especially helpful for families with babies in the NICU,” said Taylor. “Their baby came two months early, and you can’t plan for that. In addition to giving them a quiet place to work, we give them information about babies in the NICU ­– how they develop, how they grow, what to kind of expect while they are here."

While often families will find their way to the HEC, either on their own or at the suggestion of their child’s care team, Taylor and the other education specialists will make the rounds and talk to the nursing staff to identify families who may have unanswered questions.

“We will go up to the units in the morning before we open and talk with the nurses and ask, 'are there any families up here who you feel like need some additional education that we can prepare for them'? Or the nurses will just call and say, 'I have a family. They can't leave the bedside, their child is really sick. But can you get them some information about their condition?'”

The HEC has a number of models and mannequins available to parents; Taylor recalls one mother whose daughter was diagnosed with a liver condition; the mother couldn’t understand what she was seeing in the two dimensional imaging, so Taylor used a model to show her exactly where the liver is and helped her understand what the doctors were saying. The models also help parents prepare for at-home care and gives them the opportunity to practice any procedures they may have to perform, such as using a nasogastric tube, how to catharizing their child or administering medicines rectally.

“Nurses will bring families down as part of their care-by-parent training or preparing to go home,” said Taylor. “They'll bring them down so they can practice on the doll, so they don't have to do that the first time on their real child. Doing a feeding or suctioning a trach can be really scary.”

Taylor recalls bringing her daughter home for the first time. Her baby was born healthy and without any complications, but even with her medical background, caring for a newborn felt overwhelming at times.

“I can only imagine how difficult it will be for a parent who doesn't have any medical background, who is going home with a baby who has health issues – or even an older child who has had normal growth and development that now, all of a sudden, has this traumatic issue that requires a trach or a G tube and they don’t know what to do,” said Taylor. “So one of my passions is when they come in here is to really make sure that they feel comfortable to take care of their baby or their child when they leave this hospital.”

“When people come in, they tell us their story,” said Judi Dunn, manager of the education department at UK HealthCare, which includes both the pediatric HEC and the adult education center in Chandler Hospital. “We find out what their concerns are, what their questions are, how they like to learn and we give them the information they need. This credible and understandable information gives them context and helps them understand what the doctors and nurses are saying. We encourage them to jot down questions they have related to their child and ask their care team."

“It’s like giving them back a sense of control,” said education specialist Korinne Callihan. “So much has gone out of control with their health status, their roles, their location and their relationships, and now they have a little semblance of that back, and they can understand what’s going on and make their own decisions.”

The education continues even after the children leave the hospital. Taylor and the other specialists let parents know they can contact them after they leave with questions and that they can also have additional packets of information mailed to them at their homes. This is especially important to families dealing with a rare diagnosis who may have a hard time finding correct and credible information on their own.

Another group that benefits from the HEC’s trove of information are nursing students. Part of a nurse’s job is not just to care for their patients, but to educate them as well. Taylor and the other education specialists teach nurses how to talk to patients and their families and to teach them about their child’s condition using models and pamphlets.

The success of the patient education department at UK HealthCare comes from the generosity and support of Don and Cathy Jacobs. Longtime supporters of UK HealthCare, the Jacobs took an early interest in the efforts of the patient education department and were instrumental in providing education resources such as a video resource in each patient room that patients could use to research their condition and medications. The need for patient education hit home for the Jacobs family as Cathy’s niece Raegan was diagnosed with cancer at the age of 15; Cathy wanted to support the pediatric health education center in Raegan’s honor when she saw firsthand the need for a center where parents could go to gather their thoughts and look for answers.

“We have navigated some difficult times and UK HealthCare has continued to be our partners in each journey,” said Jacobs.

As for Taylor and the other patient and family education specialists, their satisfaction comes from helping parents understand and regain some control in confusing and stressful times.

“I think that my hope would be that people just know that we're here for everybody, and we want to make sure that everybody has what they need,” she said. “The children go home safely and can be home, and the parents feel comfortable with being home with them and taking care of them.”