In the Hospital Phase - Fact Sheet

A brain injury has a dramatic effect on the family as they battle a wide range of emotions while also 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 acquired brain injury. In some hospitals, all patients with 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. For example in cases of bone injury, an orthopaedic surgeon will be in charge. In the Intensive Care Unit, a registered nurse (RN) is always available and assigned to patients.

Waiting for the prognosis – predicting the future

Predicting the future of a person with an acquired brain injury is not always possible. The condition of the patient can change rapidly 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 often required in the search for information.

Understanding medical information

Understanding medical terminology can be difficult, especially during times of stress. However, it is better for people to ask questions than not understand what is happening. People often prefer to direct such questions to a person with whom they feel comfortable, such as a member of the nursing staff, a doctor or an allied health professional like a physiotherapist or a psychologist.

It is common for hospitals to hold meetings with family members and various members of staff involved in the patient’s care. These meetings provide a good opportunity for relatives to ask questions of specific professionals. It is often helpful if those attending prepare for these meetings by writing down the most important points or questions to raise.

Advocacy

The best interests of patients and their families are easily overlooked during times of stress. This can occur unintentionally as a result of a lack of necessary resources, work overload or poor communication. Most hospitals provide support to obtain information and make decisions. The person providing this support is often the social worker.

Informing the patient

With so much energy being put into the patient’s health, family members are often reluctant to say anything that may upset the injured person, especially topics such as another person’s death. It is advisable to discuss these concerns with the appropriate hospital staff who will provide guidance in this matter. It is usually preferable to tell patients any traumatic news (although they may forget) but be aware that due to the brain injury, their reaction may be different to what is expected.

Adjusting to the experience

For family members and close friends, this may be one of the most stressful and emotional times in their life. Individuals must look after their own emotional and physical health if they are to care for the patient and other family members. Support groups may be available at the hospital or through the local Brain Injury Association.

Coping strategies

The following ideas are designed to help friends and relatives come to terms with the traumatic experience of having someone sustain a brain injury:

• Acknowledge your personal reactions to stressful experiences.
• Reduce other sources of stress in your life.
• Accept support, whether it be talking things over or getting help with the housework.
• Talk with other people about your feelings and experiences as this can help you accept what has happened.
• Be aware that other family members may deal with the situation very differently to you.
• Maintain a sense of normality by developing a routine for structure in your life.
• Ring the Brain Injury Association in your state for community services and support groups.

Impact on the family

A head injury occurring in your family is likely to be one of the most stressful periods of your life. Most families go through a period of shock or disbelief that such an event could happen. At first, you will be on “automatic” and nothing much will sink in. When you are ready, don’t be embarrassed to ask questions you think you may be repeating. It is normal to forget what people say to you in the first weeks following a trauma.

It is important to remember that each member of the family and the injured person’s friends will be trying to deal with this trauma in their own way. It is normal to go through a number of different reactions to the situations, such as:

• A sense of unreality (“This can’t be happening to us”)
• Feelings of anger, often directed at the cause of the injury
• Feelings of self blame (“If only I hadn’t let him/her go”)
• Despair and hopelessness
• Frustration and sorrow.

You may not want to leave the hospital for fear that something will happen as soon as you are gone, but it is important for you to get some rest, whether at the hospital or at home. Try to arrange for someone to come in and support you. It has been demonstrated that people who use support of family and friends in times of crisis have lower levels of stress following the tragedy than those who try to go it alone. To get through this you need to look after your own emotional and physical health. Family members can be so busy looking after their relative with a brain injury that they neglect their own needs for self-care. Here are some reminders of how to look after yourself:

• Try to stay in touch with the outside world
• Organise a rotating schedule with other family members for hospital visits
• Ensure you get enough sleep and relaxation
• Learn to ask for and accept help from relatives and friends
• Contact and join organisations which focus their efforts on prevention, treatment, and research into head injury.

Other recommendations that may ease your way are to be assertive (not passive or aggressive) about the rights of individuals with a disability and make certain you receive all benefits to which you are entitled. Avoid attempts to be Superman, Mighty Mouse or Wonder Woman. Look after yourself, and allow yourself off days.

Continue asking questions until you get answers, even though the answer will frequently be that there is no answer. Remember, you are the expert on the injured individual as you have a history of close interaction with the person. Although you may not fully understand the medical situation, you know the strengths, weaknesses and personality that existed prior to the injury.

Talking with the Professionals

It can be daunting to be in the hospital setting meeting numerous different professionals. If you feel unable to ask questions, provide the professional with a written list of questions that you would like to have answered. Discuss your feelings directly with a staff member with whom you feel comfortable so that changes can be made before too much time lapses. Have your list of questions to refer to so that you have a written reference available when expressing concerns.

When technical jargon is being used, speak up and let the professional know that you do not understand what a particular word means. Asking for specific examples to illustrate terms and concepts can also be helpful. If you read reports and don’t understand technical words, highlight them and ask to have them explained.

A number of questions can be asked to elicit information and may include:

• What kind of response should I be watching for?
• What kind of problems can I anticipate?
• What do you see as priorities at this time?
• What questions do you think I should be asking about the future (in terms of service, accommodation etc.)?
• What are the treatment goals and how are you trying to achieve them?
• How can I help in the treatment?

Ask professionals to give you their opinion of how your family member/friend is progressing. Ask to schedule individual meetings so that you become better acquainted with staff and their particular role and perceptions.

The Family as Carers

Living with the effects of brain injury requires each individual member in the family, including the injured person, to work through specific tasks. It is important to give each member time to feel comfortable with and perhaps learn the new responsibilities and roles which they now have to assume. The tasks, like the recovery stages, will overlap and some of your family members may get stuck in a certain stage due to depression or reaching a milestone or significant date.

The Process of Adapting

Grieving

This task is complicated. Society doesn’t have any rituals to grieve for someone who has survived, especially where the hope for improvement is always in the back of everyone’s mind. Family members often find themselves juggling between the states of hope and despair. It is often difficult to pinpoint the exact losses for grievers. These losses may include changes in intellectual abilities, personality, social functioning, and often quality of family relationships.

Restructuring

This task depends on the role changes within a family and how difficult the roles are to give up or assume for each family member. For example, for a housekeeping, child-minding wife to suddenly become the breadwinner and financial decision-maker in the family can prove very traumatic for the entire family. This stage requires acknowledging the losses and accepting the permanent changes required to the family unit in respect of roles and responsibilities among family members.

Developing a New Identity

This task calls for family members to accept the person as they are now, while recognising that they are still growing and changing, rather than continuing to compare them with what they once were. In order to come to terms with the “new” person, family members need to accept the relative permanence of the changes in roles, functions, behaviours, and capabilities within the family. This is a very difficult and highly charged process, complicated by the level of recovery.

Growing Through Adversity

The task for families here is to acknowledge their own strengths, courage, depth of experience and knowledge gained in coping with such a trauma, without glossing over the profound losses that have taken place.

Hospital Staff

There are many professionals who may form part of the medical team. 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 specialises 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 maximise 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.