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.
NURSING EXCELLENCE FELLOWSHIP
1991 – 2010
2005 – 2006 Jocelyn Bessette Gorlin, RN, CPNP
The Children’s Hospitals and Clinics of 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
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
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
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
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
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
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
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
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
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
Wendy Newton, RN, BS
Puget Sound Blood Center
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
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
Susan Shannon, RN
National Medical Center
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
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
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.