The objective of this project is to create a web-based, interactive health communication application [IHCA]1 that promotes healthy physical and social development in young girls and adolescents with mild to moderate intellectual disability (MTM-ID). The program, """"""""Live Smart Live Safe(R): Healthy Development for Girls and Adolescents with Intellectual Disability,"""""""" will be developed as a tool to aid parents and service providers of girls and adolescents (7-21 years of age) in teaching girls with MTM-ID about physiologic maturation, self-care skill building (e.g., menstrual management), and social development (e.g., abuse prevention). The program addresses the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) mission, which is interested in the development of effective tools for prevention research and intervention programs related to STD/HIV, pregnancy, health promotion including interpersonal and social factors, and health literacy. The Phase I project will create an IHCA program on the developing body. Phase I content will be comprised of six modules: 1) motivational segment for parents and service providers that addresses the affective concerns associated with the topics of physiologic and social maturation and promotes parent/service provider self-efficacy to guide these discussions, 2) the meaning of physiologic changes, 3) hygienic practices associated with changes in the body (e.g., how to use and dispose of sanitary pads), 4) tracking the menstrual cycle, 5) social norms associated with pubescence (e.g., being on your period is private), &6) communication skills. In the Phase II IHCA, we will expand program content and will develop an age-tailored (7-12 and 13-21) segment on the social aspects of development. For example, we will develop a module called """"""""Making Friends,"""""""" and it will provide training on: (a) treating your body with respect (e.g., distinguishing between good and bad touch in multiple interactional contexts), (b) reporting unsafe touch, and (c) developing healthy friendships (e.g., how to get to know people). The Phase II product will be a downloadable IHCA for use on personal computers, iPad(R), and other tablet based technologies, suitable for joint use by both adults and children/adolescents with ID. Formative procedures will be used to solicit input from parents and service providers (n=20) of girls with MTM-ID to help identify the types of materials needed to help parents and service providers feel comfortable and prepared to teach about physiological maturation (e.g., menarche, managing monthly cycles, and bodily changes) and to identify the salient affective issues that impact such discussions (e.g., embarrassment). Ten parents and service providers of girls with MTM-ID will pilot test the program to test program functionality and ease of use. The feasibility of the Phase I project will be evaluated using a quasi-experimental within-subjects design with 20 parents, 20 girls with MTM-ID, and 10 service providers.
This application addresses the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) mission, which is interested in the development of effective tools for prevention research and intervention programs related to STD/HIV, pregnancy, health promotion including interpersonal and social factors, and health literacy. The Phase I program is designed for evaluation by parents, girls with mild to moderate intellectual disability (ID), and caregivers of girls and adolescents with ID. The confluence of th high rate of sexual abuse experienced by this population,2-4 the association between early menarche and intellectual disability [ID],5 and the difficulty females with ID experience in engaging in basic menstrual self- care6-10 indicates a need for a program of this type.
