Nursing student hopes her research makes life better for sickle cell patients

BETHESDA, Md. - Tiffany Lufkin wants her research to pay off in the form of a better quality of life for persons with sickle cell anemia.

"I hope to give a voice to sickle cell patients," said Lufkin, a nurse who is completing her bachelor's degree via a unique program offered by Indiana State University.

All classes in the baccalaureate nursing completion program are offered via distance education, though students receive clinical training in real-world health care settings.

Lufkin's "classrooms" have included some of the most respected names in health care: The Johns Hopkins Hospital in Baltimore, Suburban Hospital in Bethesda and, most recently, the National Institutes of Health, where she completed a research fellowship.

Her research topic was "what sickle cell anemia patients want their providers and the public to know about living with sickle cell."

Pain is the greatest concern for those with sickle cell, according to interviews of patients Lufkin conducted during her 10-week fellowship at the Mark O. Hatfield Clinical Research Center, the nation's largest hospital devoted entirely to clinical research.

"The pain with sickle cell is very similar to post-operative pain or cancer pain. That's something that many providers who aren't as familiar with sickle cell may not know," said Lufkin, whose study conducted via the center's Social Work Department was funded by an NIH Intramural Research Training Award Fellowship.

Because severe pain can strike at any time, many patients seek treatment in hospital emergency rooms, often asking for specific, highly powerful medications. To a doctor or nurse not trained in the specifics of sickle cell, such requests raise concerns about a potential drug addiction problem - concerns that are generally unfounded and delay relief, Lufkin said.

"Sickle cell patients know how best to manage their pain," she said. "Unfortunately, many health care providers do not know the extent of the pain and that they need the heavy narcotics to control their pain."

Through her research, Lufkin also found many sickle cell patients have difficulty keeping jobs because of the effects of their illness, which often requires extensive rest and creates periods when they are unable to work.

"They have specific needs like rest and hydration and they don't want their employers to think that they're lazy or taking advantage of their disease. But they do have a hard time keeping a job, which means they have a hard time getting and keeping insurance. With a chronic disease, there is a lot of cost," Lufkin said.

That's where social workers come in, said Adrienne Farrar, chief of the NIH Clinical Center Social Work Department. 

"We play a large role in ensuring the psycho-social health of the patient. We play a role in making sure that their entire needs are taken care of - not just their physical needs but their psychological needs as well," Farrar said.

"While they're here, in light of their illness, we do a fairly comprehensive job of trying to understand who they are, who their families are, what it is that is important to them, in terms of how they want to live the rest of their lives," she said. "We do that as members of an interdisciplinary team. Many times patients leave here needing all kinds of different things and we are very much involved in assuring that they receive the resources and the services that they would be eligible for once they return home to their communities and to their families."

In addition to nursing students, the NIH Clinical Center Social Work Department utilizes social work majors in its fellowship program, Farrar said. The program is highly competitive, she noted, with only about one applicant in five selected for a fellowship.

A native of Mount Vernon, Ohio, who currently resides in suburban Gaithersburg, Md., Lufkin is a Navy wife and mother of two. She chose Indiana State to continue her education because it offers the only entirely online program for licensed practical nurses who want to complete a Bachelor of Science degree.

Lufkin credits an online class in research for sparking her interest in conducting inquiry and analysis that can make a difference in peoples' lives.

"I want to do clinical nursing," she said. "At first, I wasn't sure how I would use the research. I didn't really want to sit down and read a bunch of research reports. However, the more I learned about it and the more I got my feet wet and got involved in it, I found out I really liked it."

Lufkin is already spreading the word about her findings. A brochure she developed in conjunction with her research was distributed at a Stomp out Sickle Cell Walk in Washington, D.C. She also hopes to distribute it at a sickle cell clinic at Howard University.

This December, Lufkin expects to visit the Indiana State University campus for the first time - to receive her bachelor's degree. It's a degree that will pave the way for her to become an RN and accomplish her goal of combining clinical nursing with research.

Photos:
http://isuphoto.smugmug.com/photos/632549309_fzuWS-L.jpg -Tiffany Lufkin (right), a student in Indiana State University's online baccalaureate nursing completion program, discusses her research on sickle cell anemia with Adrienne Farrar, chief of the social work department at the National Institutes of Health Mark O. Hatfield Clinical Research Center in Bethesda, Md. (National Institutes of Health photo) 
http://isuphoto.smugmug.com/photos/632549233_aJSL8-L.jpg - Tiffany Lufkin, a student in Indiana State University's online baccalaureate nursing completion program, stands in front of the Mark O. Hatfield Clinical Research Center at the National Institutes of Health. Lufkin served a 10-week research fellowship at the center, located in Bethesda, Md. (National Institutes of Health photo)

Media contact and writer: Dave Taylor, media relations director, Office of Communications and Marketing, Indiana State University, 812-237-3743 or dave.taylor@indstate.edu