NIH invests $4 million to provide access to reproductive health for people with disabilities

The National Institutes of Health will provide $3,906,026 over five years to researchers at the CUNY Graduate School of Public Health and Health Policy (CUNY SPH) Institute for Implementing Public Health Research (ISPH) to test the effectiveness of new socialization and sex. Educational program for young people with intellectual and developmental disabilities.

CUNY SPH Professor Dr. Suzanne McDermott and Associate Professor Dr. Heidi Jones will test the curriculum in a randomized controlled trial of 856 adolescents and young adults aged 16 to 27 who receive services from service providers with disabilities in four of the five regions with developmental disabilities. New York State Office of People with Developmental Disabilities.

Half of the participants will be randomized to receive an updated socialization and sex education program in one-to-one sessions during home visits, and the other half will receive a group physical activity and nutrition intervention at local community centers.

Research staff will conduct six-week interventions with interview data collected before the intervention and at two, six, and 12 months. The expected result will be a change in the knowledge and behavior of the participants.

WHAT INFLUENCES

McDermott said that although young people with developmental disabilities have been provided with information about reproductive health for decades, they have never been invited to take part in clinical trials to test the effectiveness of the approach.

“Applying the rigor of a randomized controlled trial to evaluate this approach is a breakthrough for these often marginalized young people,” she said.

People with intellectual and developmental disabilities are traditionally excluded from clinical trials on the grounds that they cannot give informed consent. McDermott and Jones challenge this notion and work with CUNY’s Life Experience Consultants, Advisory Board, and Institutional Review Board to ensure that informed consent and consent materials are understood by study participants.

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

BIG TREND

The findings from this translation are intended to 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 into adulthood.

“This research will provide important and much needed information to service providers and families of youth with special needs in the US and around the world,” said CUNY SPH Dean Ayman El-Mohandez.

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