Family Education for Confirmed Newborn Screen

Faculty Contact: David E. Sandberg, PhD

Background:
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 National Institute of Child Health & Human Development research initiative in NBS 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, we developed 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.

Objectives:

  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 health care providers 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.

Research Topics & Methods:
The educational prototype has now been evaluated within a cohort of families in one mid-western state and feedback has been received from key governmental agencies involved in the NBS program, non-governmental agencies (not-for-profit advocacy and support groups), and health care provider specialists. The plan is to now expand the prototype for full-scale implementation This project has been funded in part by grants from the NIH R41 HD057714 and the Michigan Department of Community Health.

For more information, please contact:
David E. Sandberg, PhD
Professor and Director, Division of Child Behavioral Health
Department of Pediatrics and
Child Health Evaluation and Research (CHEAR) Unit
University of Michigan
300 North Ingalls Building, Room 6D18
Ann Arbor, MI 48109-5456
Telephone: (734) 647-8100 Fax (734) 936-6897
Email: dsandber[at]med.umich[dot]edu