Date of Graduation
Project/Capstone - Global access
Master of Public Health (MPH)
School of Nursing and Health Professions
Wiskott Aldrich Syndrome (WAS) is an immune system (immunodeficiency) and blood disorder that increases the risk of severe infections and bleeding. A patient with WAS has a significant reduction in the size and number of platelets (micro thrombocytopenia), meaning there is a reduced ability to form blood clots and stop bleeding. WAS affects approximately 1 in 250,000 males in the United States. Public information on WAS is predominantly scientifically based, which makes it difficult for families to fully understand the syndrome, the impacts of severe bleedings on patients’ daily activity, and how to improve the patients’ quality of life. This study examined the existing resources available for patients and families and created recommendations and new resources based on the most identified needs. The Wiskott Aldrich Foundation is dedicated to ensuring that individuals are made aware of the syndrome and are prepared for any emergency situations (Ex. Severe bleeds). This study identified a lack of a clear and concise information guide on the syndrome and how to prevent the bleeding to educate school staff and teachers who spend the most hours of days with these kids at school. Based on the findings, this study introduced new resources that can be used to further educate the general public on WAS and ensure that a patient’s health and safety are best attended to. The public health impact that providing clear and concise informational guidelines entail include a peace of mind for parents that are weary of leaving their child in another person’s care as well as trained and informed individuals readily available to attend to a wiskott patient’s needs. Future needed research should consist of studies on how informed teachers feel they are when needing to address an emergency situation, studies on how prepared schools are for emergency bleeds (Ex. Are kits packed in every classroom setting, or studies on what suggestions Wiskott families have to better care for their patient as well as whether these suggestions have been implemented in any way.
Tesfaiohannes, Naomi, "Addressing the Educational and Interventional Needs of Wiskott Aldrich Syndrome (WAS) Patients and Families" (2022). Master's Projects and Capstones. 1410.