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Nursing Excellence Fellows

2013

Kimberly Jacobson
Childrens Hospitals and Clinics of MN HTC

Telehealth Videoconferencing for Children with Hemophilia and Their Families: A Clinical Project

As technology advances and provides electronic tools for enhancing communication by phone and computer, health care providers are finding ways to adapt these tools into patient care. Telehealth is the use of electronic information and telecommunications technologies to support long-distance clinical health care. For patients with hemophilia who experience a bleed in the home setting, telehealth has the potential to help the patient, family, and health care provider assess what is going on and develop the best plan of care, all while the patient stays in the home setting. In this clinical project, we will use the telehealth resources available at our institution to partner with patients and families with severe hemophilia with a high risk of bleeding episode who also have a home computer with a camera and internet access. We want to find out more about how many patients have these home resources, how to use video-conferencing when managing a bleed and what patients, families, and health care staff think about using video conferencing. This will help us plan future research using telehealth video-conferencing for a larger group of hemophilia patients.

2011 to 2012

Carolyn Solomon
Michigan State University Center for Bleeding and Clotting Disorders

A Web-Based, Real-Time Menstrual Tracking Tool

Menstrual cycles for females with bleeding disorders can present special challenges not experienced by other girls and women. Having your period can be physically, social and emotionally exhausting. A new web-based application is now available and can be downloaded to your personal mobile device or desktop computer. With this application you can track how long your period lasts, how much you are bleeding, any interventions utilized and how it is affecting your daily life. This is a new web-based application you can download that is free and available to all girls and women with bleeding disorders through their federally funded hemophilia treatment center (HTC).

2010 to 2011

Linda Grooms
Nationwide Children's Hospital
Linda Grooms

A New Approach for a New Generation

The primary purpose of our project will be to provide education that is specific to adolescent females diagnosed with a bleeding disorder. Most of the information available in the bleeding community is gender specific to males, age specific to adults and focused on von Wilebrand Disease and not platelet dysfunctions. In order for these young girls to form a concrete knowledge base that they can build upon through their adult life, they need additional educational resources for their diagnosis and prescribed therapy as well as support.

2009 to 2010

Jocelyn Bessette Gorlin
Children's Hospitals and Clinics of Minnesota
Jocelyn Bessette Gorlin

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

Nurses and health care providers recommend Emergency Medical Identification (EMI) such as Medic Alert 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 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. 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.

2008 to 2009

Robin Chapman
Emory University Hemophilia Program
Robin Chapman

Development of an Institution-Wide, Customizable, Computer-Based, Training Module

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. - See more at: http://www.hemophilia.org/researchers-healthcare-providers/research-gran...