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Birth Defects Surveillance Program

Community Based Research and Outreach

  • In 2012, we obtained 135 parent-completed surveys were obtained describing prenatal, childbirth, and childhood experiences of children with Down syndrome in Florida. Most participants (92%) received prenatal care and 60% of them described the care as excellent. Just 25% of participants received the child’s Down syndrome diagnosis prenatally. Families of children cared for in the NICU received significantly more adequate information on Down syndrome and sensitive care from the physician. The study provided a better understanding of the strengths and challenges in accessing pre- and postnatal services and supports for children with Down syndrome. The results of this survey were also compiled into two manuscripts; : “The Family Experiences Survey: Services and Supports for Children with Down Syndrome and their Families in Florida” was initially submitted for publication and not accepted. During the summer and fall of 2015 the manuscript was reassessed and revised in preparation for re-submission. Additionally, analyses were completed and a manuscript was drafted to describe survey results related to “Social Support, Community Participation, and Acceptance: Parents of Children with Down Syndrome in Florida.”

  • Cleft lip and cleft palate are the two most common forms of craniofacial defects. According to the Florida Birth Defects Registry, 1,814 Florida babies were diagnosed with cleft lip, with or without cleft palate, and 1,095 babies were diagnosed with cleft palate only between 1998 and 2007. Statewide incidence rates were 8.5 per 10,000 births for cleft lip, with or without cleft palate, and 5.1 for cleft palate without cleft lip for the same period. Focus groups conducted over the past year by the Florida Birth Defects Surveillance Program have revealed that the experiences among the families of Florida children diagnosed with birth defects in navigating care systems vary greatly. Focus groups conducted over the past year by the Florida Birth Defects Surveillance Program have revealed that the experiences among families of children diagnosed with birth defects in navigating care systems vary greatly. This research study seeks to further investigate these differences. This study consists of a survey designed to gain further understanding about the experiences, specifically of parents and primary caregivers of children born with orofacial clefts (cleft lip and/or cleft palate), while accessing services and supports in their community. The objective of this survey is to gain more insight into Hillsborough County and Florida families' experiences from prenatal care, through childbirth, and throughout early childhood and school age years, including key transitions. The findings of this study will be used to identify areas of strength and gaps in formal and informal supports and services, to inform policy and system-level decisions, and to improve professional practice in medical, educational, and community settings. 

    Information: 

  • The Statewide Florida Resource Guide for families of children diagnosed with specific congenital anomalies provides information on more than 100 active organizations, support groups, non-profits, and medical and therapeutic centers dedicated to providing advocacy, information, health care, support, recreational activities, etc. for children with congenital anomalies and their families. In spring 2016, the resource guides will be distributed, including printed copies of the Tampa Bay guide for local support groups. Families may find the amount of information provided by the resource guide overwhelming. The BDSP and the FBDR created a brochure that can be provided to families in hospitals across Florida that provides timely and accurate information regarding: birth defects-related  family-to-family support, medical and community resources, and sources of credible information regarding specific conditions.Formative research was conducted with families of children with birth defects and providers who work with them to understand what information would be pertinent to parents of children born with birth defects at birth or first diagnosis. Through interviews and focus groups, the content, attractiveness, usefulness, cultural appropriateness, and readability of sample brochures has been discussed. Pilot distribution of the brochure at a Tampa Bay area hospital is next. The pilot study will determine the challenges and impacts of brochure distribution from the perspectives of families and of health care providers. The results of the pilot study will be used to inform the development of a distribution protocol to disseminate with the brochure statewide.

  • Customer journey mapping has traditionally been used as a market research tool to help understand the customer’s experience. However, journey mapping has proved useful in health and social services research as a quality improvement and advocacy tool for improving the service experience and engagement of underserved populations such as persons with disabilities, individuals in the drug court system, participants in mental health services, and participants in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program. The BDSP research team conducted journey mapping observations and in-depth interviews with numerous stakeholders and providers involved in the Florida Zika response system to understand their experiences and perspectives on the coordinated response and system of care, particularly for pregnant women and infants impacted by the virus. Some of the sources included: mosquito control departments, global and infectious disease researchers, local obstetric and family practice clinics, case managers from social services organizations, and infectious disease epidemiologists. These interviews were transcribed and qualitatively analyzed.

    The Florida Department of Health has a website for further information on Zika. The website contains information for health care providers, residents of the state, travelers, and information on further resources.