Unintentional traumatic brain injury in children: the lived experience.

Brain injury is a major cause of injury death and long-term neurological impairment in children often requiring long-term support. Despite the significance and frequency of such injuries, very little is known about the circumstances of these injuries, the long-term outcomes and family support needs. In this pilot study of 10 families of children with traumatic brain injury, participants described a variety of factors which contributed to their child's injury (inattentiveness, unfamiliarity, developmental level, lack of protective gear, invulnerability, peer pressure, environmental hazards and lack of supervision). As a result of their child's injury, family members described fundamental shifts in how they view life and that the roles and responsibilities of family members changed drastically. Study families experienced sustained uncertainty and described the impact on family relationships. While social support was clearly a mediating factor, families described the need for ongoing support and services to help them adapt to new roles, cope with new challenges, and manage sequellae such as post-traumatic headaches, epilepsy, learning difficulties and behavioural problems. The study findings represent an initial attempt to develop knowledge upon which focussed injury prevention interventions can be developed. Furthermore, this information will assist in the determination of appropriate health, rehabilitative, and educational support services for children with brain injuries. Involving families in this way will enhance the implementation of practical and useful support services for families of children with brain injuries.