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Improving Reproductive Health Services for Youth with Intellectual Disabilities

The National Institutes of Health (NIH) will award $3,906,026 over five years to researchers from the Institute for Implementation Science in Population Health (ISPH) at the CUNY Graduate School of Public Health and Health Policy (CUNY SPH) to test the efficacy of a new socialization and sex education curriculum for young people with intellectual and developmental disabilities.

CUNY SPH Professor Suzanne McDermott and Associate Professor Heidi Jones will test the curriculum in a randomized controlled trial among 856 adolescents and young adults (ages 16-27 years) who receive services from disability providers in four of the five Developmental Disabilities Regions of the New York State Office for People with Developmental Disabilities.

Half of the participants will be randomized to receive an updated socialization and sex education curriculum in individualized sessions during home visits, and the other half will receive a group-based intervention on physical activity and nutrition in local community centers. Study staff will provide the six-week long interventions, with interview data collected prior to intervention and after two months, six months and one year. The primary outcome will be change in knowledge and behaviors 12 months after completing the intervention.

“Young people with developmental disabilities have been provided information about reproductive health for decades, but they never were invited to participate in a clinical trial to test the efficacy of the approach,” says Dr. McDermott. “Applying the rigor of a randomized controlled trial for evaluation of this approach is a breakthrough for these often marginalized young people.”

two teenagers, both of which have Down Syndrome, smile at each other

People with intellectual and developmental disabilities are traditionally excluded from clinical trials under the assumption that they cannot provide informed consent. McDermott and Jones are challenging this notion, and are working very closely with lived experience consultants, an advisory board and CUNY’s institutional review board to ensure the informed consent and assent materials are understandable to the study participants.

“One of the most exciting aspects of this study is that we are hiring lived experience consultants in each of the four regions to collaborate on all aspects of the study,” says Dr. Jones. “Our hope is that this collaboration will ensure that the results are meaningful to these youth and will be used to truly inform best practices for sex education for youth with intellectual and developmental disabilities.”

The findings from this translational study will inform practitioners, advocates and self-advocates about best practices for reproductive and sexual health education for adolescents and young adults with intellectual and developmental disabilities as they transition to adulthood.

“This research will produce important and much-needed insights to service providers and families of youth with special needs in the U.S. and globally,” says CUNY SPH Dean Ayman El-Mohandes.

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