Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome

All individuals with intellectual and developmental disabilities (I/DD) have the right to develop and express sexuality in an emotionally satisfying and socially appropriate manner. Questions have arisen as to whether sexuality education for this population should be the responsibility of the school or the family. This study looked to evaluate the role of the parents as the primary sexuality educators for their adolescents with Down syndrome (DS). This is because parents of children with DS report they want to be the primary sexuality educators for their children, but often overlook the responsibility because they do not know what to talk about, when to talk about it, or how to modify content so their child will understand. Previous research has shown that parents of typically developing children have an increase in self-efficacy talking about sexuality topics after attending a workshop. However, there is no such research for parents of individuals with I/DD generally, or DS specifically. In order to address the lack of formal parent education on sexuality and healthy relationships for individuals with I/DD, the Home B.A.S.E. for Developmental Disabilities workshop was designed utilizing principles of adult learning and social learning theories. There were 13 participants that completed the training. A small sample study assessing the effectiveness of the curriculum was carried out using a parallel mixed methods design. In addition to assessing the curriculum’s effectiveness, parental concerns that often inhibit teaching were collected. The data supports that the Home B.A.S.E. for Developmental Disabilities curriculum has a large effect on increasing parent confidence and comfort initiating sexuality discussions and communicating about sexuality topics generally with their adolescents with DS. Parent attitudes surrounding sensitive sexuality topics can be transformed leading to more direct and open communication between parents and their children with DS. As a result of the training, parents reported they felt less of a need for additional information on all sexuality topics in order to effectively communicate with their child with DS, they understood the importance of direct and open communication, and they felt better prepared and aware of available resources.