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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.
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In the hospital phase 
