The purpose of this SBIR is to produce and test an educational kit (videotape, pill crusher, thermometer, reference card) that teaches parents of infants with sickle cell disease to give prophylactic penicillin and recognize and respond to early signs of infections. Fulminant, life- threatening infection from S. pneumoniae is the major complication of sickle cell disease during early childhood. In a randomized controlled trial (PROPS) conducted in the mid-1980s, investigators demonstrated that twice-daily administration of penicillin to affected children less than 5 years of age dramatically decreases the incidence of pneumococcal infection. Subsequently, state newborn screening programs for sickle cell disease were established in more than 35 states so that affected infants can be started on penicillin as soon as possible. Ultimately, it is the parent who must adhere to the rigid therapeutic regimen and react appropriately to signs of infection. The project will develop a kit to aid the health provider in educating parents and to serve as a resource for parents at home in the daily care of their child. The activities of Phase I included 1) development of content areas for the videotape; 2) production of a script treatment for a 12-15 minute videotape.
The aims of Phase II are to produce the videotape in English, Spanish, and Haitian Creole and evaluate its effectiveness in improving parents' knowledge, attitudes, and behavior related to prevention and management of infection in young children with sickle cell disease. Three versions of the videotape (in English, Spanish, and Haitian Creole) will be available for mass production and distribution in Phase III.
