Synapse - reconnecting lives

A brain injury has an immediate effect on the family as they battle a wide range of emotions while coming to grips with the hospital system.

It is important to become familiar with the hospital's departments, wards and key staff providing treatment for the brain injury. In some hospitals, all patients with a traumatic brain injury are admitted to the neurosurgical unit and cared for by the neurosurgeon. However, patients with multiple injuries may be attended by a number of specialists.

In the Intensive Care Unit (ICU), a registered nurse is always available and assigned to patients. Most hospitals should have a social worker available who can assist with information and coping with the hospital system. 

Emotional reactions for the family

It is very stressful for families when a loved one acquires traumatic brain injury, stroke or similar brain disorder. A period of shock or disbelief is common at first. Many report a sense of unreality and being on "automatic" so it is hard to take information in. It can help to write everything down.

Everyone reacts differently - you may feel despair and blame yourself while another family member may be very angry and looking to blame others. Try to be supportive of each other despite the different ways everyone will cope. 

Waiting for the prognosis - predicting the future

Predicting the level of recovery after a brain injury is difficult, and doctors are usually cautious about early prognosis. Family members and other visitors have the right to ask questions, express a point of view, and receive clear and timely information. Sometimes the answer may be "we don't know" and this may be the only honest answer available. Patience and persistence are required in the search for information. 

Understanding medical information

Understanding medical terminology can be difficult, especially during times of stress. However, it is better to ask questions than not understand what is happening. If hospital staff use words you don't understand, ask them to explain it in a simpler way.

Some hospitals hold meetings with family members where you can ask questions. Write these down and record the answers. Examples include: 

• What are your treatment goals?
• What is being done to achieve these goals?
• Do you have any idea of how much recovery can be expected?
• What ongoing effects from the brain injury are expected?
• How can the family help at this point in time?
• Should we be doing anything now to prepare for discharge?

Talking with the patient

When a person is in a coma, it is very unlikely they can hear and understand others, but nonetheless there have been rare cases of people emerging from a coma and remembering what family members said. This is worth keeping in mind when visiting the patient - see our coma fact sheet for more information.  

Sometimes a patient will have post-traumatic amnesia, a period of confusion and disorientation that will pass. It is best to not stimulate the patient with too much noise or activity. Talk quietly and calmly in short sentences and remember the person will tire quickly and probably not remember what was said. See our fact sheet about post-traumatic amnesia. 

Coping strategies

This is a very stressful and emotional time for family members. Look after your own emotional and physical health so that you can provide support for the patient and each other in the weeks ahead. A common reaction is the family feeling they should be at the hospital as much as possible but remember to go home regularly and recharge your batteries for the long haul.  Tips for self-care include:

• Remember to eat well and get regular sleep
• Organize a rotating schedule for visits by family members
• Talk with others about your feelings and experiences
• Reduce other sources of stress in your life
• Accept support e.g. talking things over or help with housework
• Be aware others may deal with the situation very differently to you
• Maintain a sense of normality with routines and structure in your life
• Learn as much as you can about brain injury
• Ring your nearest Brain Injury Association about available support. 

Hospital staff you may encounter

There are many professionals who may form part of the medical team for treating a stroke, traumatic brain injury and other brain disorders. The following are brief explanations of those likely to be involved in acquired brain injury situations.

Nursing team: specific nurses are usually assigned to a patient and are responsible for the immediate care of the patient. A more senior member of the nursing staff usually coordinates the overall management of the ward including patient care, staff and support services

Medical specialists: they are involved in a patient's care depending on the type and extent of the injuries. Some specialists who may be involved include:

Intensive Care Physician: a doctor who specializes in the management of patients who require the complex support available in an intensive care unit.

Registrar: a senior doctor who directs the hospital unit team and patient management. The registrar may also assist the specialist/consultant in caring for the patient.

Resident: a junior doctor who will rotate through all the specialist areas of a hospital in order to gain experience and skills unique to these areas.

Visiting Medical Officer: also known as a VMO or consultant, a visiting medical officer is a senior doctor subcontracted by the hospital to provide oversight and mentorship for registrars and residents.

Medical director: a senior doctor responsible for a department or unit.

Ward Consultant: a doctor who is assigned to a particular ward to oversee the care of patients in the ward.

Neurosurgeon: a surgeon who is a specialist in the management of disorders of the nervous system, brain and spine.

Neurologist: a medical specialist who diagnoses and treats disorders of the brain, brain stem, spinal cord, cranial nerves and their functioning. People are often referred to neurologists if they experience headaches and seizures.

Neuropsychologist: a psychologist who is specifically trained in understanding how the brain works and how it affects behaviour, thinking, memory, learning and personality. A neuropsychological assessment is designed to identify changes in a person's thinking and behaviour after the brain has been injured and how this impacts upon day-to-day functioning.

Occupational therapist: a therapist who has the expertise to improve or maintain independent functioning in all aspects of daily living. An occupational therapist is also involved in assessing and treating the person's functional skills in the areas of physical, cognitive and social behaviour.

Orthotist: a specialist technician who develops and fits mechanical devices such as a brace, splint or body jacket.

Physiotherapist: a therapist who is trained to deal with the patient's physical problems caused by the brain injury in order to maximize physical functioning. This includes treating associated injuries such as fractures and ligament damage and any weakness or spasticity resulting from long periods of inactivity or bed rest.

Speech language pathologist: a specialist who assesses and treats communication and swallowing difficulties. Sometimes there may be damage to the voice and articulation mechanisms, such as the breathing, tongue and facial muscles.

Social Worker: a social worker provides a wide range of social services including support, information, and referral and counselling to patients and families.

Other professionals who may be involved in monitoring a person's condition or providing care at different stages of recovery include a dietician, ear nose and throat (ENT) specialist, ophthalmologist, psychiatrist, radiologist, recreational therapist and rehabilitation coordinator.