Birth Defects Surveillance Program
Community Based Research and Outreach
Understanding Family Experiences and Improving Systems of Care
Our program partners with families and communities to better understand their experiences navigating care and support systems after a child is born with a birth defect. By learning directly from parents and caregivers, we aim to improve the services and information available to families across Florida.
One initiative gathered input from parents of children with Down syndrome, revealing challenges with prenatal diagnosis and highlighting the importance of clear communication and compassionate care, especially in NICUs. A separate effort focused on families of children with orofacial clefts, exploring their experiences from prenatal care through school-age transitions. This work has helped identify both strengths and gaps in support across healthcare, education, and community systems. We also mapped the experiences of those involved in Florida’s Zika response to highlight opportunities for improving coordination and care during public health emergencies.
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The Statewide Florida Resource Guide for families of children diagnosed with a wide range of conditions provides information on more than 400 active organizations, support groups, non-profits, and medical and therapeutic centers dedicated to providing advocacy, information, health care, support, recreational activities, and more for children with congenital anomalies and their families
The BDSP and the FBDR have created a brochure to distribute to families with newborns in Florida hospitals. This brochure offers timely and accurate information regarding family-to-family support related to congenital anomalies, medical and community resources, and credible sources of information about specific conditions.
These resources were developed by parents for parents. Our team conducted formative research with families of children born with congenital conditions and the providers who work with them to understand what information would be most pertinent to parents at birth or at the first diagnosis. We also discussed the content, attractiveness, usefulness, cultural appropriateness, and readability of sample brochures through interviews and focus groups. This research directly influenced the development of the brochure to ensure it meets the needs of families effectively.
The Statewide Florida Resource Guide is updated annually, ensuring that families have the most accurate and current information about available supports and services. Both the guide and the brochures are accessible online and available in hospitals across Florida, making it easier for families to find the help they need.
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- Resource Guide
- Birth Defects Brochure (English)
- Birth Defects Brochure (Spanish)
- Birth Defects Brochure (Haitian Creole)
- Birth Defects Brochure (Portuguese)
- Zika: A Case Study for Examining Florida Systems of Care for Children with Special Needs
- The Family Experiences Survey: Services and Supports for Parents of Children with Orofacial Clefts in Florida
- Hurricane Response for Families in Florida
- Hurricane Preparedness (English)
- Hurricane Preparedness (Spanish)
- Hurricane Logistics: Special Needs Shelter (English)
- Hurricane Logistics: Special Needs Shelter (Spanish)