The effect of severe traumatic brain injury on the family.

BACKGROUND: The effects of traumatic brain injury on family dynamics and finances have not been extensively studied. We designed a 30-item survey to determine the effects of the injury on the child, parent(s), and siblings, and whether parents were retrospectively content with the decisions related to aggressiveness of care.
METHODS: A questionnaire written on a sixth-grade reading level was mailed to 46 families of children who survived a traumatic brain injury resulting in an initial Glasgow Coma Scale score < or = 7. This is a descriptive study without statistical analysis. Human Studies Committee review and informed consent were obtained.
RESULTS: Thirty-two of 46 (69.6%) surveys were completed by mail or telephone. Mean patient age at time of injury was 8.7 years, mean time since injury was 3 years, and mean Glasgow Coma Scale score was 3.7. Approximately one third of children have disabilities related to education, socialization, and/or self-care skills; require multiple health care visits each month; and require prescription medications. Over one third of families were impacted in a moderate to profoundly negative way; 30% of families reported a deterioration in finances or loss of job; and 16% reported a worsening of adult relationships. In 13 of 32 cases, modification of current housing or new housing was required to facilitate home care. Siblings were adversely affected in approximately 16 of 28 families, exhibiting behavioral problems, increased fear, and withdrawal from the injured child. Only 1 of 32 families stated that they would have considered less aggressive treatment, even if it led to the child's death.
CONCLUSION: Traumatic brain injury of a child had a negative impact on family dynamics and/or sibling behavior in more than one third of families. Despite this, most families would not limit or withdraw care if they could reconsider decisions regarding treatment. This information can be used to counsel families.