Objectives: The purpose of this study was to identify what stakeholders considered best practices for parent-provider communication regarding newborn hearing screening and diagnosis. We used consensus data to develop educational materials for parents.
Methods: We conducted 29 focus groups and 23 individual interviews between October 2003 and May 2004. Participants included (1) English- and Spanish-speaking parents of infants <18 months of age who had experience with hospital-based newborn hearing screening; (2) parents of children with hearing loss; (3) primary care providers who provide prenatal care or care for newborns; and (4) audiologists, audiology technicians, and hospital nurses.
Results: Communication to parents about hospital-based newborn hearing screening was limited. Most parents first learned about the screening in the hospital, but all stakeholders thought a more opportune time for education was before the birth. For parents of infants who did not pass the newborn hearing screening, stakeholders recommended direct communication about the urgency of diagnostic testing. They also indicated that primary care providers needed current information regarding hearing screening, diagnostic testing, and early intervention. All stakeholders thought that a brief brochure for parents to take home would be helpful for hospital-based screening and, if necessary, subsequent diagnostic testing. Primary care providers requested basic, to-the-point information.
Conclusions: The most opportune time to begin discussion of newborn hearing screening is before the birth. Providers need up-to-date information on current standards of hearing screening, diagnosis, and intervention. User-friendly patient education materials, such as those we developed, could assist providers in educating parents.