Family Education for Confirmed Newborn Screen

DESCRIPTION (provided by applicant): Newborn screening (NBS) is a national public health initiative directed at identifying genetic or metabolic disorders in newborns which, if left untreated, are associated with significant morbidity or mortality. The role and scope of NBS is rapidly expanding given technological advances. Concurrent with this expansion is a widening gap in educational, emotional and other resource supports for families of newborns receiving confirmed diagnoses of chronic, sometimes life-threatening, conditions. The NICHD Research Initiative in Newborn Screening includes the development and testing of innovative interventions and treatments to improve outcomes; education of the provider workforce; development and implementation of appropriate information and communication systems for parents and providers; and sponsorship of ongoing research and research training programs. In response to this call, our intention is to develop a comprehensive, interactive DVD and web-based educational program, for parents of children born with a condition, congenital adrenal hyperplasia, identified through the NBS system. While both technology platforms (DVD and internet) can deliver comparable educational content (e.g., video clips of lectures with animation, scenes of individuals and families modeling successful interaction with healthcare professionals, etc.), the contrasting opportunities for interaction and tailoring of content, and the settings in which each technology is typically viewed (i.e., as a family in front of the television vs. a single user at the computer), makes it imperative that pilot work exploring the optimal blending of these technologies be conducted. Phase I Specific Aims are to: 1) create the educational psychosocial program prototype on DVD and internet media; 2) solicit and receive feedback from key stakeholders (i.e., families with affected children, health care professionals, and representatives of the national NBS system) to inform product development; 3) conduct a needs assessment and identify issues to consider when extending this educational technology to non-English speaking populations; i.e., Spanish-speaking families; 4) address any confidentiality/compliance issues related to the use of the technology by both families and healthcare professionals during which potentially personally identifying information is disclosed; and 5) establish and maintain partnerships with key government and other stakeholders in the national NBS system to facilitate acceptance and endorsement of this educational technology. Public Health Relevance: The long-term goal of this project is to develop, apply, test, evaluate, and refine a cost-effective approach to patient education and support that takes advantage of readily accessible technology. If successful, the development of this approach will enable the families of young patients to become more knowledgeable about the condition and competent in caring for their child's health by addressing both informational and emotional support needs. This model has significant potential for commercialization through the publication of patient education programs across the full spectrum of chronic medical conditions identified by expanded newborn screen.