Information needs of families when one member has a severe brain injury

Despite calls for health and social services to respond to the needs of informal carers, there is little evidence to guide practioners in the best way to provide support and/or information in situations of complex need such as brain injury. This study addressed such an intervention in a prospective descriptive study, using both qualitative and quantitative methodology. Eighty-nine patients who had been admitted to a regional neurorehabilitation unit for management of traumatic or haemorrhagic brain injuries were consecutively discharged to the community over a period of 12 months. Eighty-two of these people identified a carer who agreed to be interviewed at approximately six weeks after discharge regarding their concerns. The study identified that even soon after discharge from inpatient rehabilitation, carers wanted more information. In many cases the need for information was unrelated to either the severity of injury or level of functional deficit. In addition, requests for information were in many cases not sought spontaneously, but required prompting. Such findings have implications if interventions in this field are to have the optimum chance of succeeding in providing support and assistance.