Head injury survivorship: The family experience.

Abstract

Health professionals as well as families are being confronted with long-term care and caregiver issues that accompany the increasing incidence of individuals surviving traumatic brain injury. A sample of parents and brain-injured offspring from 20 families served as informants. The purpose of this study was to identify a qualitatively generated theory describing the parent's experience following a brain-injured child's return to the home setting. An exploratory qualitative design using grounded theory methodology was used during data collection and analysis. All the brain-injured offspring had survived a moderate-to-severe traumatic brain injury; were living with at least one parent; and were ages 17 to 34. A three-phase theory, Investing in the Comeback, was generated using grounded theory methodology. The theory's three stages, centering on fostering independence and seeking stability, describe the work of the parent living with a brain-injured offspring. The first phase, Centering On, involves the parent's focusing attention and behavior primarily on the brain-injured offspring. During Fostering Independence, the second phase, the parent initiates and maintains efforts to promote the offspring's resumption of independent functioning. The final phase, Seeking Stability, consists of the parent working to establish a regime that maintains the brain-injured offspring's optimal performance, while minimizing the strain on other family members. Theoretical sampling guided the identification of categories, properties, conditions, and consequences of each phase. Four quantitative measures supplied descriptions of sample characteristics and included demographics, cognitive deficit ratings of the child by the parent and the investigator, and the parent's perception of the family's functioning.