The National Hemophilia Foundation is pleased to announce the recipients of its nursing, social work and physical therapy fellowships for 2009.
The recipient of the Nursing Excellence Fellowship is Jocelyn Bessette Gorlin, RN, CPNP, from The Children’s Hospitals and Clinics of Minnesota in Minneapolis. The Social Work Excellence Fellowship went to Jacqueline Lefkowitz, LCSW, MA, MSW, from New York Presbyterian Hospital--NY Weill Cornell Medical Center in New York City. There were two recipients of the Physical Therapy Excellence Fellowship, David L. Oleson, PT, PCS, from Oregon Health & Science University in Portland, and Patricia Tobase, PT, DPT, OCS, from University of California, San Francisco.
Gorlin’s project is, “Use of Emergency Medical Identification in the Pediatric Hemophilia Population: A National Study.” Nurses and healthcare providers recommend emergency medical identification (EMI) such as MedicAlert for children of all ages with hemophilia and other bleeding disorders, but most are unsure of what type should be used and where they should be located. This is because there are no guidelines on how EMI should be worn. This project will develop guidelines for the use of EMI and educational information for families of children with hemophilia. Guidelines will show recommended ages to wear EMI, its use with infants, and where it should be worn or if it should be carried. In addition, this project will review barriers for not wearing EMI based on our research, including perceived lack of need, sizing concerns for infants and the fear of being different as expressed by adolescents.
Lefkowitz’s project is, “Women with Severe and Moderate Hemophilia A and B and Other Bleeding Disorders: A Grounded Theory Study.” She will collect data from interviews with women who have moderate or severe hemophilia or another congenital bleeding disorder. Participants will be asked to express the impact that a congenital bleeding disorder has on the development and maintenance of identity and social relationships. The interviews will provide women a chance to share how they feel about the impact that living with a bleeding disorder has on their lives. The results of this study will be of benefit to treatment providers and the entire community as we come to better understand the unique experiences of this segment of the bleeding disorders population.
Oleson’s project, “Comparison of Two Types of Ankle Braces in the Management of Ankle Pain in Hemophilia,” will examine the differences in effectiveness of fracture boots, which are “walking casts” that can be put on and taken off, and carbon fiber braces, which use a newer technology resulting in lighter and smaller braces. Gait analysis wearing both the fracture boot and the carbon fiber brace will be performed using a mat equipped with pressure sensors that will measure aspects of gait such as step length and foot position. People with hemophilia A and B who experience ankle pain from bleeds will be asked to participate. Levels of pain will be measured before, during and after each trial. Measurements from the gait mat and levels of pain relief will be used to determine effectiveness and acceptance of each type of support.
Tobase’s project, “Outcome Tools to Utilize Pre and Post Orthopedic Interventions for Hemophilic Arthropathy,” will provide clinicians with a recommended set of valid and reliable outcome tools to assess efficacy of common orthopedic interventions for hemophilic arthropathy. Current research uses a range of parameters such as range of motion, pain and complication rates to measure change and/or success after an orthopedic intervention. The goal of this project is to allow hemophilia treatment centers to collect data in a standard format for future analysis and research projects.
The Physical Therapy Excellence Fellowships are sponsored by the generous support of Novo Nordisk.