The purpose of this research is to develop and test a kit (videotape pamphlet, thermometer, reference card) that teaches parents of infants with sickle cell disease to give prophylactic penicillin and recognize early signs of infection. Fulminant, life-threatening infection from S. pneumoniae is the major complication of sickle cell disease during the first years of life. The efficacy of twice-daily administration of penicillin as an antidote for pneumococcal infection was demonstrated in a randomized controlled trial in the mid-1980's. Subsequently, state newborn screening programs for sickle cell disease were established so that affected infants could be started on penicillin as soon as possible. Ultimately, it is the parent who must adhere to the therapeutic regime and react appropriately to signs of infection. The project will develop a kit which will aid the health care provider in educating parents and provide positive reinforcement for parents at home.
The aim of Phase I is to develop, with provider and parent advisory groups, the written material and script for the videotape. During Phase II, a rough-cut video will be produced and evaluated by the advisory groups, and a controlled randomized trial will be conducted to evaluate the effectiveness of the materials.
