Communicating with Patients and Families About TBI

What Information Do Families Need?

Information about brain injury is the number one need reported by families. Yet educating families about brain injury is complicated. The brain is so complex that it is difficult to predict recovery. Each brain injury is unique.

The Three C’s or Basic Rules of Communication with Families Are...

Currency: Current or up-to-date information

Content: Important information at that time

Compassion: How information is given

How information is delivered can be just as important as what is said.

Any hospital stay is stressful for families, but treatment for a brain injury makes this an even more difficult time. Many families are in a state of emotional shock, confusion and grief in the early days of hospital care. This stage is commonly referred to as denial. This is a coping method used while families gather the inner resources to deal with the diagnosis and its meaning. It does not mean that families do not need or want information at this stage. It does mean that families may retain only a small portion of conversations because of their stress and fluctuating emotions.

It is important for professionals to ask what they are doing to help educate and communicate with the family. Every person involved with the patient, whether a physician, therapist or nurse, is a potential communicator and educator with the family. Surveys show that clear and understandable information is one of the most important priorities for families.

Communicating with Families

• Explain what part or parts of the brain have been injured.
• Use diagrams of the brain to illustrate what is being said.
• Provide family with Glossary of Terms handout.
• Explain how the brain reacts to an injury.
• Explain what is being done to help the patient’s brain function now.
• Describe what may happen next.
• Suggest ways that families can communicate and comfort the patient.
• Explain the Glasgow Coma Scale and/or the Rancho Los Amigos Scale if either or both are being used.

Setting Up Communication

• Talk with families in a private comfortable space whenever possible; avoid distractions and being overheard.
• Avoid talking in the presence of a patient who is in a coma or low level cognitive state; it is not known how much the patient can hear.
• Use body language to convey attention and respect. For example, sit with families rather than standing over them.
• If families have difficulty understanding English, obtain a professional medical interpreter. Try not to rely on a family volunteer who might misunderstand or have limited command of English.

Giving Information

• Assess families’ ability and willingness to absorb information and adjust your pace and vocabulary.
• Connect families’ observations of the patient with clinical findings. Start with external observations and objective data. End with clinical implications.
• Review and repeat information as needed.
• Give copies of illustrations to explain neuroanatomy.
• Avoid false or premature reassurances as they can confuse families and create mistrust.
• Summarize information exchanged and decisions made at the end of a meeting with families.
• Give written information about brain injury, such as pamphlets or fact sheets.

Involving Families

• Treat families as team members with valuable knowledge about the patient prior to the brain injury.

• Help families feel confident by acknowledging the accuracy of their observations and their ability to care for the patient.
• Admit it when you don’t know the answer to a question, but reassure families that their questions are valid.
• Encourage families to record information using methods that are easy for them to remember, such as audiotapes, note taking or journaling.
• Maintain regular communication with the family as a patient progresses.
• Ask the family to identify one person to be the primary link for communication and know how to contact that person.
• Involve families in discharge planning.

Supporting Families

• Ask families about their feelings and give them time to talk about them. Unexpressed feelings can block communication and learning.
• Recognize the normal stages of grief for families. They include denial, anger, bargaining, depression and resolution. You may see the full range or the early stages depending on the length of stay and the patient’s progress.
• Expect anger from families. It is a normal part of grieving. Do not take it personally or retaliate if you are the target for a family’s emotions.
• Respect spirituality of families and inform them of resources in the hospital, such as chaplains or a chapel.
• Give families tasks to help them cope with their anxiety and acknowledge the contributions they make. Examples are rubbing body lotion, reading stories and teaching simple exercises.