In Home Family Supports: What Families of Youngsters with Traumatic Brain Injury Really Need.

This guide, based on a qualitative research study which identified primary stressors in families of children with traumatic brain injury (TBI), presents: (1) a summary of the needs of families affected by TBI; and (2) a proposed theoretical intervention model to meet those needs. The first section attempts to describe the present system of services focusing primarily upon its limitations through a personal account of the frustrations one family experienced in trying to get temporary care for a TBI son as well as through selected quotes from parents who attended a disabilities research conference in October 1989. Annotations to the parental comments are provided for clarification and a section labelled "Interpretation" follow each group of parental commentary. Interpretations of parent needs underline their concern for their other children, their desire to experience as normal a life as possible, their desire to be integrated into community life, and their need for competent and respectful help. Section II presents possible new directions for people needing help in the areas of expanding supports (to include cognitive and behavioral therapies and such stress reducers as arranging transportation). New directions discussed include Medicaid reforms to support parents trying to care for their children at home, expanding the scope of worker expertise and practice, a family centered emphasis in all services, improved teaching/training services, and seeing parents as case managers. Specific suggestions for agencies providing direct services are also offered. An appendix lists the unmet family needs identified by the survey. Includes 6 references. (DB)