Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients

This report discusses the successes and problems associated with the development of a family support system designed to improve outcomes in a pediatric trauma population. Studies have demonstrated lowered health-related quality of life among injured children during rehabilitation, along with substantial parental stress. By developing comprehensive support services for families, we may decrease parental burden and improve parents' ability to care for their children, thus improving health outcomes for them. Through analysis of data from a longitudinal study of injured children, focus group interviews with affected families, and consultation with a multidisciplinary team, interventions were developed. The resulting program consists of 3 main components: (1) efforts to increase coordination of discharge care, (2) establishment of educational protocols, and (3) implementation of support groups and a peer support program for families. Patient satisfaction and reported use of program materials is high; efforts to improve education, regarding transitions to school and other activities, are continuing. Early evaluation of the program suggests that it is effectively addressing family needs; evaluation of the program's long-term effect is ongoing. We are able to discuss successes and barriers to program implementation and make recommendations for others considering such an undertaking.