SEVERE BRAIN INJURY AFTER CARDIAC-SURGERY IN CHILDREN - CONSEQUENCES FOR THE FAMILY AND THE NEED FOR ASSISTANCE

Objective-To identify the short and longer term needs of parents whose children sustain severe brain injury after cardiac surgery and to det ermine what further measures could be of use to the family after such a catastrophe. Design-Qualitative analysis of data generated by semist ructured interviews and a series of self report questionnaires. Settin g-Tertiary cardiothoracic referral centre. Subjects-Group I: four sets of parents (eight individuals) whose children had suffered severe bra in injury after heart surgery; group 2: four sets of parents (seven in dividuals) caring for children with acute brain injury from other caus es. Results-The data provide evidence of social, emotional, physical, practical, and financial difficulties. After the children suffered bra in injury following cardiac surgery their parents did not receive info rmation, support, and practical assistance as early as they needed it. Conclusions-Although a small population was studied, it would seem th at a structured, planned health care service response to this devastat ing event is not established; therefore, the needs of these parents ar e not well met. The parents and our inquiries suggest that a coordinat or who is not attached to the hospital where brain injury occurred mig ht optimally fulfil this role.