Development of a Genetics Education Tool for the Non-medical Staff of Perkins School for the Blind Secondary Program

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dc.contributor.advisor Schneider, Gretchen Casner, Sarah 2010-09-13T15:08:28Z 2010-09-13T15:08:28Z 2010
dc.description.abstract Hereditary disease is a leading cause of blindness in children in the United States and other developed countries, where environmental causes of blindness, such as vitamin deficiencies, are less prevalent. Many hereditary causes of blindness are syndromic, and children affected by these diseases have multiple impairments. It is therefore important that those who provide care to these children understand the etiology of their diagnoses. The purpose of our study was to assess interest in a genetics education tool for care providers of children with hereditary blindness, and to develop and pilot test such a tool based on the outcome of the assessment. We surveyed the non-medical staff of the Perkins School for the Blind Secondary Program regarding their interest in and understanding of many different genetic causes of blindness, and their preferences with respect to the format and content of an educational tool. We found that the survey respondents were most interested in learning about Bardet-Biedl syndrome, Batten disease, Leber congenital amaurosis, retinitis pigmentosa, retinoblastoma, and septo-optic dysplasia, all common among students who attend Perkins. The respondents indicated a preference for an in person seminar, rather than online video, book, or fact sheets. We conducted two educational seminars and attendees were asked to complete a survey evaluating the usefulness and effectiveness of the seminars. The respondents indicated that the information they learned was useful to them, and will be a positive influence on the care they provide to students they interact with. Our findings suggest that non-genetics care providers may benefit from educational seminars that focus on genetic aspects of the specific populations they serve. Individual relationships between genetics professionals and care providers in specialty settings such as Perkins may allow for more effective educational interventions than would the use of written materials or recorded media.
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences
dc.format.mimetype application/pdf
dc.language English
dc.language.iso eng
dc.publisher Brandeis University
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Sarah Casner 2010
dc.subject Perkins School for the Blind
dc.subject Genetics
dc.subject Education tool
dc.title Development of a Genetics Education Tool for the Non-medical Staff of Perkins School for the Blind Secondary Program
dc.type Thesis
dc.contributor.department Graduate Program in Genetic Counseling MS Masters Genetic Counseling Brandeis University, Graduate School of Arts and Sciences
dc.description.esploro yes

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