Improving access to reproductive health services among youth with intellectual and developmental disabilities

Nearly $4 million NIH grant will fund study testing new socialization and sex education curriculum

NEW YORK, Feb. 21, 2023 /PRNewswire/ — 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 12 months. 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.”

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.

Grant number 1R01HD111044-01.

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About CUNY SPH

The CUNY Graduate School of Public Health and Health Policy (CUNY SPH) is committed to promoting and sustaining healthier populations in New York City and around the world through excellence in education, research and service in public health and by advocating for sound policy and practice to advance social justice and improve health outcomes for all. sph.cuny.edu

About CUNY ISPH

The CUNY Institute for Implementation Science in Population Health (ISPH) was founded on the notion that substantial improvements in population health can be efficiently achieved through better implementation of existing strategies, policies, and interventions across multiple sectors. With that in mind, we study how to translate and scale up evidence-based interventions and policies within clinical and community settings in order to improve population health and reduce health disparities.

SOURCE CUNY SPH