When Norma Liburd, RN-BC, MN, was 10 years old, she was hospitalized for nearly a week with pneumonia. With Liburd in an isolation room, “a great big ward,” as she describes it, her parents were only allowed to visit once or twice each day, and, when they came, they were shrouded from head to toe. “I just remember being so scared and so alone,” Liburd reflects.
The experience would have been difficult for any young child, but Liburd fortunately had made a friend in the hospital who helped her through the experience: a nurse.
Patient Care a Key Part of Most Days
Although Liburd claims there is no “typical” day in her life, one consistency is four days (two full and two half) of clinics. During these days, Liburd visits patients and families, seeking to improve education and assess her patients’ school performance.
“These diseases impact [patients’] performance in school,” Liburd says. “We have to write letters to the school so that it understands what some of their special needs are. I identify their needs and make modifications to their school day so they can reach their educational goals.” Occasionally, Liburd will attend a patient’s school and meet with faculty to address a specific child’s needs.
For patients who were struggling with their treatments—whether they were consistently late for appointments or unaware of their medication regimen—Liburd designed a positive-reinforcement agenda called the “Rheum Service Credit Program.” The program offers “points” to patients who arrive on time to their appointments, recite their required medications, receive infusions, and cooperate with staff. At 25 points, the patients are offered a $10 gift card.
“It’s a really popular program. The kids love it and always come in asking how many points they have,” she says.
Liburd’s regular duties also include triaging the 70–80 new patient referrals her hospital normally receives each month as well as assisting the registered nurse to authorize medications, obtain refills, and develop handouts. In particular, Liburd emphasized the importance of handouts to increase patient and family education.
“There’s a lot on the Internet that does not necessarily say what we want to say. Especially if new medications become available, we want to make sure the readability of the handouts are at a low enough level so people can understand what’s being said to them,” Liburd says.
Developing a List Serve
In addition to her clinical responsibilities, Liburd coordinates the Pediatric Rheumatology Nursing Network, a worldwide list serve for pediatric rheumatology nurses. Beginning as a North American newsletter, the list serve now operates as a forum for 165 nurses from countries including the United States, England, Canada, Spain, and Australia.
“It’s been very rewarding because I get to interact with many people, if not in person, at least on the phone and Internet. It’s been really exciting to see the conversations generated on the list serve,” she says.
Especially for small pediatric rheumatology practices, the list serve provides invaluable advice from its diverse participants. “I want to get the word out that if you are practicing alone with one pediatric rheumatologist, you are very isolated. In this way, [the list serve] opens up the whole world to you,” Liburd says.
To be added to the list serve, e-mail your credentials to [email protected].
I think a lot of nurses have to be detectives. When you interview patients, you have to get through a line of questions to get the right answer.
—Norma Liburd, RN-BC, MN
Highs and Lows
Before becoming a clinical nurse specialist, Liburd worked as a head nurse, where she disliked the profession’s budgetary and managerial aspects and felt removed from patients and their families. After a year, however, she found a job as a nurse coordinator in the pediatric rheumatology program.
“The first day I worked at the job, I thought ‘this is my place. I have arrived.’ I have been in pediatric rheumatology since then,” Liburd says.
Since accepting her job, Liburd’s experiences at the ACR/ARHP have been career highpoints, because she was able to network globally, learn from other professionals in the field, and lead presentations.
“It’s all been very rewarding. Any piece of my life that’s been involved with the ACR/ARHP has been really wonderful,” she says.
Liburd also has worked on several research projects and is currently involved in three studies, including a six-month safety trial of pregabalin in adolescent patients with fibromyalgia. She likens her research to an investigation, saying she does not find difficulty balancing her studies and clinical work because she enjoys both.
“I think a lot of nurses have to be detectives. When you interview patients, you have to get through a line of questions to get the right answer,” Liburd says. “It’s the same going through a chart; you know what data you need to collect, it’s knowing how to find the right information.”
Despite Liburd’s enthusiasm for her work, her job also includes “the bane of [her] existence”: struggling with insurance companies. Liburd describes her frustrating experiences with insurance companies, where she sometimes will spend three hours dealing with them to authorize a patient’s necessary medication.
“It’s not just me, it’s also the RN I work with—we’re all just frustrated with the whole process of getting medications authorized,” Liburd says. “What’s sad is we’re paying nurses to do what they do best and they’re spending a lot of time on the phone with insurance companies. Our money could be spent in other ways, and that’s what’s concerning to me.”
However, despite the aggravations of insurance companies, Liburd’s love for her work has not waned. “I really can’t imagine any other career path,” she says. “I found my niche and I love what I am doing.”
Kevin Stevens is a writer based in New Jersey.
