2008-2009 Recipient

Robin Chapman, FNP-BC, MSN Emory University, Atlanta, Georgia

“Development of an Institution-Wide, Customizable, Computer-Based, Training Module Designed to Teach the Administration of Products Routinely Prescribed in the Treatment of Bleeding Disorders and Bleeding Disorder Diagnoses” The purpose of this project is to request support for the development of a computer-based training (CBT) module designed to teach the care and treatment of patients with bleeding disorders to nursing staff in a large, multi-campus pediatric healthcare institution. The module will be designed to exist within an intranet environment accessed by all members of the healthcare institution. Core modules will include a description of each common bleeding disorder, a basic review of processes surrounding the multidisciplinary care of bleeding disorder patients, the involvement of other hospital departments in managing a patient with a bleeding treatment plan (e.g., blood bank, coagulation lab, hemophilia treatment center staff) and medications/factor products routinely used to treat them. The result, a custom-made bleeding disorder CBT, would be available at any time to any staff member on any of the institution’s campuses being assigned to care for bleeding disorder patients, thus facilitating nursing education and patient care.

 

 

2005 – 2006                         Jocelyn Bessette Gorlin, RN, CPNP

The Children’s Hospitals and Clinics of Minnesota

Minneapolis, Minnesota

 

Project Title:          Use of Emergency Medical Identification in the Pediatric Hemophilia Population: A National Study

 

Description:          This project will develop guidelines for the use of Emergency Medical Identification (EMI) and develop 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. The study will review reasons for not wearing EMI including perceived lack of need, sizing concerns for infants, and the fear of being different as expressed by adolescents. Nurses recommend EMI 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.

 

2008 – 2009                         Robin Chapman, FNP-BC, MSN

Emory University

Atlanta, Georgia

 

Project Title:          Development of an Institution-Wide, Customizable, Computer-Based Training Module Designed to Teach the Administration of Products Routinely Prescribed in the Treatment of Bleeding Disorders

 

Description:          This training module will be set for staff at a multi-campus pediatric children’s healthcare institution. The modules will describe in a generic fashion 1) common bleeding disorders, 2) individual bleeding medications and factor products, 3) key processes within the institution that facilitate care of patients with bleeding disorders, 4) resources and their contact information to assist staff with caring for bleeding disorder patients. Information sets for disease and medication/factor topics will be developed for presentation primarily from existing written educational tools. Interdepartmental process assessment and problem solving will be key in building information sources accurately describing process within the institution that serve patients with bleeding disorders well. Interdepartmental dialogue will also be important in assuring presentation of educational information that is relevant and appropriate for healthcare providers. Once developed, the CBT set will be presented to the nursing education team for evaluation and assignment of continuing education/nursing leadership points to further encourage and reward staff seeking additional information regarding the care of bleeding disorder patients.

 

2007 – 2008                         Judith Kauffman, RN, MS, CPNP and Kacie Kaufman, RN, MSN, BC-APN

The Children’s Mercy Hospital

Kansas City, Missouri

 

Project Title:          The Effects of an Educational Intervention on Joint Health in Children with Hemophilia

 

Description:          The aim of this interventional study is to develop, pilot test and evaluate an educational program designed for children with hemophilia that provides information about the benefits of early treatment of joint bleeding. The purpose of this study is to determine if an educational intervention will motivate this population to perform health promoting behavior early, thereby reducing the disabling effects of joint bleeding. It is hypothesized that once the education is provided, health promoting behavior will occur earlier, which will result in improved maintenance of joint health. Once developed, this educational intervention will be available to all nurses who work with individuals that have hemophilia, improving the quality of care for this special population.

 

2006 – 2007                         Jenny J. Purdy, MSW and Dana M. Stephens, MS

Comprehensive Bleeding Disorders Center

Peoria, Illinois

 

Project Title:          Illinois Amish Outreach Project

 

Description:          Recent results from the National Hemophilia Foundation Amish Questionnaire suggest that only three Amish individual diagnosed with hemophilia B in Illinois receive comprehensive care, though Illinois has one of the largest Amish populations nationwide. The questionnaire does not report any Amish individuals with the diagnosis of von Willebrand Disease . Given the incidence of von Willebrand Disease  in the general population and the presumed increased prevalence of hemophilia B among the Amish, the results of the NHF Amish questionnaire suggest a potentially large undiagnosed Amish population in Illinois. These undiagnosed individuals would benefit from education about bleeding disorder and from screening, testing, and, if diagnosed, ongoing follow-up care. With the assistance of leaders within the east central Illinois Amish community, we propose to address this unmet need.

This is a joint Nursing Excellence Fellowship and Social Work Excellence Fellowship.

 

2005 – 2006                         Ellen A. White, RN, BSN

Newark Beth Israel Medical Center

Newark, New Jersey

 

Project Title:          The Student with Hemophilia: A Teaching Module for the School Nurse

 

Description:          School nurses who have no experience with hemophilia often feel anxious about having a student with hemophilia in their school. A student with hemophilia may not have a bleed while in school, but the school nurse needs to be aware of signs and symptoms of bleeding and what interventions to take. The teaching module, “The Student with Hemophilia: A Teaching Module for the School Nurse,” will be developed to provide school nurses a general overview and understanding of the medical care and treatment of hemophilia and as a resource guide for school nurses regarding the medical care and treatment of students with hemophilia that are experiencing a bleed.

 

2004 – 2005                         Marilyn Slavin Blumenstein, MSN

Children’s Hospital of Philadelphia

Philadelphia, Pennsylvania

 

Project Title:          Development of a Thrombosis Supplement for “Foundations: Comprehensive Approach to Hemophilia Care, a Self-Learning Guide”

 

Description:          The Hemostasis and Thrombosis Center at the Children’s Hospital of Philadelphia is developing a self-learning guide for healthcare professionals working in Hemophilia Treatment Centers (HTCs) who want to expand their clinical competencies to include the diagnosis, treatment and care of pediatric patients with thrombophilia and/or thrombosis. Healthcare providers working in HTCs have already benefited from a self-learning guide developed several years ago for the purpose of providing professional educational materials for healthcare providers caring for patients with hemophilia and other bleeding disorders.

 

2003 – 2004                         Susan Zappa, RN, CPN, CPON

Cook Children’s Medical Center

Dallas, Texas

 

Project Title:          “It’s an Adventure!” Developing an Educational Adventure Book for Children with von Willebrand Disease

 

Description:          A five-member multidisciplinary team of nurses and social workers from three different hemophilia treatment centers will collaborate with a professional illustrator to create an adventure storybook to teach children aged 7-12 in a developmentally appropriate way about a specific bleeding disorder called von Willebrand Disease (vWD). The working title of the book is, “It’s an Adventure!”

 

2001 – 2002                         Joan Wasserman, RN, MBA

Gulf States Hemophilia and Thrombophilia Center

Houston, Texas

 

Project Title:          Measuring Health State Preferences for Hemophilia:  Development of a Disease-Specific Utility Instrument

 

Description:          This project involves the creation and testing of an instrument that measures patient preferences for health states associated with hemophilia. Patient preferences or utilities, as they are sometimes referred to, are quality of life indicators used in studies that evaluate clinical outcomes associated with health care programs.  This study will survey participants about various health states associated with hemophilia. Based on the respondents’ ratings, preference values will be obtained for each health state. These preference values can then be used as weights for developing quality of life measures (QALYs) used in cost-effective analyses.

 

1999 – 2000                         Marge Page, RN

Fairview University Medical Center

Minneapolis, MN

 

Project Title:          Health-Related Quality of Life in Hemophilia: A Pilot Evaluation

 

Description:          The purpose of this study is to use qualitative methods to establish groundwork for health-related quality of life (HRQL) research in patients with hemophilia A and B. The project will determine how persons living with hemophilia describe their quality of life. These data will be used to develop a pilot measurement tool to assess HRQL in this patient population. Specific goals include identification of domains or dimensions of significance to the adult hemophilia population and determination of significant differences in those domains identified by HIV-positive persons as compared with HIV-negative persons.

 

1997 – 1999                         Barbara Carroll, MN, RN, CPNP

Hemophilia Center of South Carolina

Columbia, SC

 

Project Title:          Development and Implementation of a Career Counseling Model for Children and Adolescents with Hemophilia

 

Description:          This project developed a model for career awareness for children with hemophilia in order to maximize career options. Objectives were to provide vocational counseling at each comprehensive visit, with intensified interventions planned for children starting school, changing schools, and transitioning from grade to middle to high school. Counseling addressed personal, community, and social skills necessary to participate in the work force, and parents were involved in execution of the project. A guide for implementing the model was published and distributed widely.

 

1995 – 1996                         Joni Osip, RN

University of Minnesota

Minneapolis, MN

 

Project Title:          Implantable Venous Access Video for Children with Hemophilia

 

Description:          This project produced a teaching video on ports. The video described what a port looked like, explained how it was surgically placed in the body and how factor concentrates were infused through the port, and discussed the potential benefits and complications. The video also discussed hemostasis and reminded parents of the importance of treating a child promptly during a bleeding episode. Families were interviewed and filmed for the video production. The production included script development, interviews, and artwork.

 

 

1994 – 1996                         Roxanna Boelsen, RN

University of Minnesota

Minneapolis, MN

 

Project Title:          Quality of Life Issues in Children and Adolescents with Hemophilia

 

Description:          This research study measured the quality of life using the Minneapolis-Manchester QOL Survey of Health tool. Children and adolescents with Hemophilia A or B (mild, moderate, or severe) who were registered patients of the University of Minnesota Comprehensive Hemophilia Center between the ages of 8-20 were eligible. Twenty-eight patients participated and were interviewed by telephone between March 1995 and September 1996 by interviewers at the Clinical Outcomes Research Center of the University of Minnesota. These patients were compared to age/sex matched children without hemophilia. The QOL instrument ascertained the patient’s perception of his/her health status at a given point in terms of activity/mobility, psychological well being, social integration, comfort/pain, achievement of cognitive developmental expectation, fertility/sexual maturation, sensory function and satisfaction.

 

 

1994 – 1995                         Mary Bush, RN, MN

Puget Sound Blood Center

Seattle, WA

 

Wendy Newton, RN, BS

Puget Sound Blood Center

Seattle, WA

 

Project Title:          Orthopedic Surgical Outcomes in HIV-Positive and HIV-Negative Patients with Hemophilia: A Retrospective Study

 

Description:          This study compared orthopedic surgical outcome variables in HIV-negative and HIV-positive persons with hemophilia. Data were gathered from the statewide Hemophilia Care Program at the Puget Sound Blood Center in Seattle, Washington. Patients with hemophilia who had orthopedic surgery performed by the Center’s orthopedic consultant between January 1, 1980 and December 31, 1994 were included.

 

 

1993 – 1994                         Mollie Spoor, RN

Children’s Mercy Hospital

Kansas City, MO

 

Project Title:          Factors that Influence Parents’ Decisions Concerning Their Children’s Participation in the Hemophilia Growth and Development Study (HGDS)

 

Description:          This study examined why parents decided to enroll their children in the HGDS study. The study examined 171 parents of participating children and 19 parents of non-participating children. The results of this project were intended to facilitate enrollment of children in research studies.

 

 

1992 – 1993                         Mary Hudson, RN

Vanderbilt Comprehensive Hemophilia Center

Nashville, TN

 

Project Title:          The Hemophilia School Experience: A Parental Perspective

 

Description:          The purpose of this study was to identify common positive and negative experiences children with hemophilia and their parents have had with the school system. This exploratory study used focus groups to facilitate discussions with parents. They answered the question, “What is the school experience of children with hemophilia?” A total of seven parents participated from hemophilia treatment centers in Tennessee. The results of this project were used to improve continuing education of Tennessee teachers and staff and to help parents improve their interactions with their children’s teachers.

 

 

1992 – 1993                         Elizabeth Hollomon, RN

Johns Hopkins School of Medicine

Baltimore, MD

 

Susan Shannon, RN

National Medical Center

Washington, DC

 

Project Title:          Parent Preceptorship Program

 

Description:          A parent preceptorship program, taught by nurses, physicians, social workers, and physical therapists, was held on June 13, 1993 in Columbia, MD for seven family groups. The participating families were from Maryland and the Washington, DC area. Topics presented were definition, incidence, inheritance, clotting products, psychosocial/parenting issues, signs and symptoms of bleeding episodes, and physical fitness. Program booklet, pre-post test and evaluation forms were provided.

 

 

1991 – 1992                         Jocelyn Bessette, RN, PNP

Boston Hemophilia Center

Boston, MA

 

Project Title:          Experiencing Childhood Hemophilia: A Sibling’s Perspective

 

Description:          The purpose of the study was to explore each sibling’s view of his/her brother’s illness. Other objectives were to assess communication patterns in the families and whether there are specific behaviors manifested by the non-hemophilic siblings. Fifteen children participated. Two research tools were used: the Parent/Sibling Interview and Kinetic Family Drawing.

 

 

1991 – 1992                         Helen Mahoney-West, RN, MSN

Boston Hemophilia Center

Boston, MA

 

Project Title:          Guidelines for Care of HIV-Positive/AIDS Adolescents and Adults with Hemophilia

 

Description:          This project developed guidelines for commonly encountered clinical problems related to HIV disease and AIDS. The manual included a medical history, physical exam, diagnostic testing, stages of psychological development for adolescents, and phases that individuals experience when confronted with a diagnosis of AIDS.