What is GBS?
Patients may go through a variety of emotional reactions to the weakness, unpredictability and other aspects of GBS, including; denial, shock and disbelief (this can't be happening to me, I must have a more common, treatable disease, etc.,); bargaining (if I get better fast or off the respirator or really have a more benign disease, in return I'll...... be satisfied, do the following, etc.,); frustration (I'm fed up with being in the hospital and want to be back home, I'm tired of needing to wait for others to help me, be dependent on others); depression (I feel terrible, will I never get better, deserve this punishment, am worn out, can't put up with this any longer) and acceptance (I'll do the best I can, things could be worse, thank goodness I'm alive, am finally walking with only a cane, without a cane, etc.).
Guillain-Barré syndrome patients, especially those in an intensive care unit or on a respirator (breathing machine) may benefit emotionally and otherwise from the following suggestions for hospital staff and family.
Early in the hospital stay the patient may benefit from an explanation of the disease, and the relatively good chance for recovery. If family, friends and medical personnel also understand the illness, they can present a more optimistic attune to the patient.
The patient on a respirator may feel less frustrated if a method to communicate with others is provided.
It is helpful to have a central figure upon whom the patient and family can call to get explanations of the patient's status and care plans. Optimally, this should be an accessible person with good bedside rapport. In the acute hospital it is often the neurologist or general physician although in the rehabilitation centre later the rehabilitation specialist may be the person.
Explanations of their activities by nurses, respiratory therapists, physical therapists, etc., will help alleviate anxiety when unfamiliar procedures are performed.
Frequent visiting by family and friends will show caring and provide moral support.
Especially in windowless intensive care units, a clock, electric calendar and radio will help the patient keep track of day and night hours, maintain awareness of the outside world, improve orientation and minimise confusion.
Should abnormal sensations develop, the patient may be relieved to know that these are common and can often be controlled.
Allowing the patient to ventilate emotional reactions such as anger, frustration and fear will help them better deal with these.
Involvement by family and friends at the bedside with such activities as grooming, reading, cards, discussing family events and so forth will reduce the patient's sense of isolation and helplessness that a prolonged hospital stay can foster.