1. Parent preferences regarding educational material and genetic counseling for hearing loss genetic testing
- Author
-
Czape, Kayla
- Subjects
- Genetics, genetic testing, hearing loss, genetic counseling, educational materials, client preferences, needs assessment
- Abstract
Despite the advances in genetic testing for hearing loss in recent years, testing for genetic causes is not comprehensive and negative genetic test results leave families with uncertainty regarding etiology, progression, associated medical conditions, and recurrence risk. From a genetic counseling standpoint, this gap in patient care should be assessed in order to provide the patient population with adequate information through educational materials and/or genetic counseling. The goal of the current study is to develop a comprehensive review of the services and materials that are provided, needed and preferred for parents whose children have had negative results from genetic testing for hearing loss. We hypothesize that this parent population would prefer some form of educational material or genetic counseling regarding the results of their child’s genetic test. The study was accomplished through qualitative phone interviews of 16 parents and quantitative surveys of 35 healthcare providers involved in hearing loss genetic testing at a large pediatric institution. Both data sets were described individually and compared qualitatively to describe parallels and differences. Our data reveals that parents have a desire for more information regarding the genetic test ordered for their child’s hearing loss and that modification of the current practices and provision of educational materials and genetic counseling for this population may improve their understanding and satisfaction with the hearing loss genetic testing process.
- Published
- 2010