Early Days and TBI – The ICU Experience for Family and Friends
Studies of the experience of family and friends (F&F) who are at the bedside of a patient in Intensive Care suggest that the F&F have a lot to deal with and not always a lot of support. First of all, there is the apparent chaos. Although hospitals are generally organized places, trauma units (e.g., the emergency room) and ICU’s are full of medical, technical, and bureaucratic mysteries. The noise, rapid response, and brusque no-nonsense behaviors in the emergency room are bewildering and frightening for F&F. They are in a situation that is difficult, anxiety-provoking, and unexpected. They are worried about the patient’s survival; they also have fears about what the future might hold for the survivor and themselves. Will the survivor be disabled? What sacrifices will be necessary to provide resources for recovery? What about the family’s financial future? What impact will this have on their roles and relationships in their community? Meanwhile, they need to stay out of the way so the medical staff can care for the patient, even though that means being separated from their loved one and being kept in the dark while the staff is dealing with the immediate crisis.
Once the patient is moved to the ICU, F&F hope to get more complete information, but the staff may not be able to provide a thorough diagnosis and a reliable prognosis. F&F feel an overwhelming need to know how the patient is doing and what the future holds. Unfortunately, there is still a lot medicine doesn’t know about brain injuries, and, of course, every TBI is different, so trustworthy generalizations are not thick on the ground. Loved ones are looking for hope, but medical staff may not be able to tell them much that sounds hopeful. In addition, available information is often couched in highly technical language, and the stressed-out F&F may fail to understand what staff is telling them.
F&F tend to minimize their own concerns and try not to consume the time and energy of staff. They try to cope with their own anxiety and uncertainty, while constantly looking for information about the patient. They may interpret patient and staff actions and draw erroneous conclusions. They don’t want to be a bother or detract from the patient’s care, so they may fail to ask questions that would clear up anxiety-producing misunderstandings. They often feel guilty about their own fears and very real concerns (e.g., trouble sleeping, how to explain the patient’s situation to others, dread of an insecure and uncertain future).
This post is a summary of research findings cited in the following article: Agard, Anne Sophie and Harder, Ingegerd, “Relatives’ experiences in intensive care – Finding a place in a world of uncertainty,” Intensive and Critical Care Nursing (2007).