R01HD111038

ADDRESSING SEXUAL AND REPRODUCTIVE HEALTH CARE DISPARITIES AND BARRIERS AMONG ADOLESCENTS AND YOUNG ADULTS WITH DISABILITIES - PROJECT SUMMARY

STUDIES TO DATE SUGGEST THAT THE SEXUAL AND REPRODUCTIVE HEALTH (SRH) CARE NEEDS OF ADOLESCENTS AND YOUNG ADULTS (AYA) WITH DISABILITIES ARE NOT WELL MET, DESPITE THE FACT THAT THIS POPULATION IS AS LIKELY TO BE SEXUALLY ACTIVE AS THEIR PEERS WITHOUT DISABILITIES. HOWEVER, RESEARCH ON SRH AND RECEIPT OF SRH-RELATED HEALTH CARE AMONG AYA WITH DISABILITIES REMAINS LIMITED.

SCANT EVIDENCE INFORMS OUR UNDERSTANDING OF THE REPRODUCTIVE HEALTHCARE NEEDS OF BOTH YOUNG WOMEN AND MEN WITH DISABILITIES BY DISABILITY TYPE AND THERE IS NO RESEARCH ON REPRODUCTIVE HEALTHCARE SERVICE UTILIZATION ACROSS THE BREADTH OF THIS DIVERSE POPULATION. FURTHER, THERE ARE FEW RESOURCES TO HELP AYA WITH DISABILITIES NAVIGATE BARRIERS TO SRH CARE AND OBTAIN NEEDED SERVICES.

THIS MIXED- METHODS STUDY WILL EXAMINE SRH AND HEALTHCARE UTILIZATION AND SRH-RELATED UNMET NEEDS AMONG TRANSITION AGE ADOLESCENTS AND YOUNG ADULTS WITH DISABILITIES OVERALL AND BY DISABILITY TYPE IN THE UNITED STATES. WE WILL TRIANGULATE INFORMATION FROM NATIONAL SURVEY DATA, INTERVIEWS WITH AYA WITH DISABILITIES, AND INTERVIEWS WITH PARENTS OF AYA WITH DISABILITIES.

OUR ANALYSES WILL ADDRESS THREE FUNDAMENTAL QUESTIONS THAT WILL ESTABLISH A FOUNDATION FOR DEVELOPMENT AND PILOT TESTING OF A TAILORED INTERVENTION TO IMPROVE SRH CARE AND OUTCOMES FOR AYA WITH DISABILITIES, AGES 15-26:

1) WHAT DISPARITIES EXIST IN REPRODUCTIVE HEALTH CARE SERVICE UTILIZATION BY GENDER AND TYPE OF DISABILITY;

2) WHAT ARE THE BARRIERS TO SRH CARE FOR AYA WITH DISABILITIES AND HOW ARE THESE SIMILAR OR DIFFERENT BY GENDER AND DISABILITY TYPE?; AND

3) WHAT SRH INFORMATION AND RESOURCES WOULD ENHANCE KNOWLEDGE, PARTICIPATION IN CARE, AND COMMUNICATION WITH PROVIDERS FOR AYA WITH DISABILITIES?

BUILDING ON THIS FOUNDATION, WE WILL COLLABORATE WITH AYA WITH DISABILITIES TO DEVELOP AN INTERVENTION TO ADDRESS THE IDENTIFIED BARRIERS AND UNMET NEEDS. OUR PROJECT DIRECTLY ADDRESSES UNMET NEEDS FOR SRH CARE IDENTIFIED BY THE NATIONAL INSTITUTES OF HEALTH, INCLUDING (1) INVESTIGATING BARRIERS TO REPRODUCTIVE HEALTH CARE FOR AYA WITH DISABILITIES, AND (2) DEVELOPING REPRODUCTIVE HEALTH EDUCATION MATERIALS FOR USE BY AYA WITH DISABILITIES.

THIS PROJECT BUILDS ON THE RESEARCH TEAM’S PRIOR RESEARCH ON REPRODUCTIVE HEALTH OF TEENS AND WOMEN WITH DISABILITIES, EXPERIENCE IN DEVELOPING HEALTH EDUCATION CURRICULA AND SEXUAL HEALTH RESOURCES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES, AND CLINICAL EXPERTISE IN PROVISION OF CARE TO PEOPLE WITH DISABILITIES TRANSITIONING FROM ADOLESCENCE TO ADULTHOOD.

THE EXPECTED OUTCOME OF THIS PROJECT IS AN INNOVATIVE, ACCESSIBLE, MULTI-MEDIA EDUCATIONAL TOOLKIT TO IMPROVE SRH KNOWLEDGE AND ACTIVATION AND PROVIDER COMMUNICATION. OUR PILOT TESTING WILL PROVIDE INITIAL EVIDENCE ON THE UTILITY OF THE TOOLKIT FOR OUR TARGET POPULATION, ESTABLISHING A FOUNDATION FOR FUTURE EFFICACY TESTING IN A CLINICAL TRIAL.

THIS PROJECT WILL BREAK NEW GROUND BY PROVIDING A FOUNDATION OF EVIDENCE ON SRH HEALTH AND HEALTHCARE OUTCOMES, AND WILL DEVELOP AN INNOVATIVE SRH EDUCATIONAL TOOLKIT TO ADDRESS BARRIERS AND DISPARITIES AMONG AYA WITH DISABILITIES.

Brandeis University

TO CONDUCT AND SUPPORT LABORATORY RESEARCH, CLINICAL TRIALS, AND STUDIES WITH PEOPLE THAT EXPLORE HEALTH PROCESSES. NICHD RESEARCHERS EXAMINE GROWTH AND DEVELOPMENT, BIOLOGIC AND REPRODUCTIVE FUNCTIONS, BEHAVIOR PATTERNS, AND POPULATION DYNAMICS TO PROTECT AND MAINTAIN THE HEALTH OF ALL PEOPLE. TO EXAMINE THE IMPACT OF DISABILITIES, DISEASES, AND DEFECTS ON THE LIVES OF INDIVIDUALS. WITH THIS INFORMATION, THE NICHD HOPES TO RESTORE, INCREASE, AND MAXIMIZE THE CAPABILITIES OF PEOPLE AFFECTED BY DISEASE AND INJURY. TO SPONSOR TRAINING PROGRAMS FOR SCIENTISTS, DOCTORS, AND RESEARCHERS TO ENSURE THAT NICHD RESEARCH CAN CONTINUE. BY TRAINING THESE PROFESSIONALS IN THE LATEST RESEARCH METHODS AND TECHNOLOGIES, THE NICHD WILL BE ABLE TO CONDUCT ITS RESEARCH AND MAKE HEALTH RESEARCH PROGRESS UNTIL ALL CHILDREN, ADULTS, FAMILIES, AND POPULATIONS ENJOY GOOD HEALTH. THE MISSION OF THE NICHD IS TO ENSURE THAT EVERY PERSON IS BORN HEALTHY AND WANTED, THAT WOMEN SUFFER NO HARMFUL EFFECTS FROM REPRODUCTIVE PROCESSES, AND THAT ALL CHILDREN HAVE THE CHANCE TO ACHIEVE THEIR FULL POTENTIAL FOR HEALTHY AND PRODUCTIVE LIVES, FREE FROM DISEASE OR DISABILITY, AND TO ENSURE THE HEALTH, PRODUCTIVITY, INDEPENDENCE, AND WELL-BEING OF ALL PEOPLE THROUGH OPTIMAL REHABILITATION.

93.865 - Child Health and Human Development Extramural Research

National Institute of Child Health and Human Development (NICHD) [HHS - NIH]

Waltham, Massachusetts 024532728 United States

Single Zip Code

Promoting Reproductive Health for Adolescents and Adults with Disabilities (R01 Clinical Trial Optional) (RFA-HD-23-005)

Amendment Since initial award the total obligations have increased 6539% from $50,000 to $3,319,476.