By: Mariann Young, Ph.D.
Rainbow Rehabilitation Centers
The person who sustains a traumatic brain injury (TBI) is not the only person affected after an accident. All members of the family are forever changed, and the family system has to alter the way that it operates. The literature on the effects of TBI on the family repeatedly shows this to be true.
Typically, the most extensive burden is felt by the family member who assumes the role of primary caregiver. They may have to give up their career or other interests and have been known to suffer from serious depression during the first year of injury. This is a difficult process for the family to navigate — one that takes time and resources, as the process is continually changing.
In the hospital
Upon first hearing of an accident and hospitalization, the family is overwhelmed by emotions. There is the initial fear, depression, anxiety and guilt-—to name just a few. The immediate concern is: Will they survive?
Because brain injury is complex, most people may not understand the diagnosis and how far-reaching the effects may be. Medical terminology is used by health care professionals at the hospital and may not be understood. There are procedures, medications and instruments being used that have likely never been seen by the family before. Often, family members listen to the doctor or nurse without comprehending and nod, accepting what is being said, but not fully understanding.
When a child sustains a brain injury, however, the effects are different than when an adult is injured. The child always has to be considered as a member of the family. In these cases, parents are not only the support for their child, but they may become the primary health care provider. This responsibility of caring for a child who is injured coincides with their own grieving.
Because children have not completed all of the stages of development, predictions on how well they will do in the rehabilitation process are not recommended. Cognitive, behavioral and academic progress are all influenced by the location in the brain where the injury exists, family support systems in place, age at injury and social supports.
When an injured child returns home, the immediate family will play an important role in the recovery process. Challenges may arise in the areas of financial resources and the relationships between parents, the other children, other family members and friends.
The family roles will likely change, i.e., older siblings may take care of younger ones. They will find that time is at a premium, and there is probably not enough of it. Caregivers may experience social isolation as their personal world shrinks and a large part of the day is spent caring for the injured child.
In research completed by Montgomery et al. (2002), when a child experienced a traumatic brain injury, it had a negative impact on family dynamics and/or sibling behavior in more than one third of families studied. Despite this, most families also stated that they would not limit or withdraw care if they had an opportunity to reconsider the choices that they made.
There are situations in which the family becomes so involved in providing care that they do not recognize the effects of the injury on all members of the family. Even the strongest families will have challenges.
Using the family change questionnaire
Nancy Hsu, Jeffrey Kreutzer and Jennifer Menzel of the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care, developed the Family Change Questionnaire (FCQ) at right. This is an easy tool that families can use to recognize how they have changed and to begin to think about the changes. It may be used in a family discussion or with the aid of a counselor.
Family members can think about changes in their responsibilities and roles in order to plan for the future. Discussing the answers to the questions will help improve understanding and communication. Regular discussion about feelings and ideas can strengthen the family support system and help overcome challenges that may be faced in the future.
Recognizing how the lives of other family members have changed because of the injury is an important step in emotional recovery.
Family members are integrated into the recovery process as much as possible at Rainbow. Literature and education are available as are trainings in the best ways in which to assist a family member who is injured.
It is important that families have resources available to them. These can be in the form of educational materials, support groups, counseling, membership in the state or local Brain Injury Associations, or all of the above. Rehabilitation is most effective when there is a team effort functioning on behalf of the injured person. Families require care for their psychological well-being throughout this process.
[tagline_box backgroundcolor=”” shadow=”no” shadowopacity=”0.1″ border=”1px” bordercolor=”” highlightposition=”top” link=”” linktarget=”_self” buttoncolor=”” button=”” title=”Family Change Questionnaire” description=”Use this tool to aid discussion with your family or a counselor.
How did you feel when you first learned that your family member was injured?
How did you feel when you realized that your injured family member was going to live?
How did you feel when you began to recognize that the brain injury might have long term effects?
How have other family members reacted to your injured family member’s injury?
Have you made yourself available to provide more emotional support to your injured family member and other family members? If yes, how so?
Before the brain injury, what were the most important plans you had for your future and your family’s future?
How has the brain injury affected your plans for the future? What responsibilities do you now have to care for your injured family member?
In what ways do you help your injured family member get back and forth to appointments?
Do you attend therapy and doctor visits with your injured family member? Please explain.
Do you help your injured family member with filling out insurance, registration, medical and disability forms? Please explain.
Do you help your injured family member get authorizations for medical and rehabilitative care? Please explain.
Have you taken over responsibilities from your injured family member or uninjured family members? If yes, what new responsibilities do you have related to caring for the house, maintaining the car(s), working, paying bills and caring for children?
Have you changed your work responsibilities or hours since the injury so you could help your injured family member or the family? Please explain.
How has your family’s income been affected by the injury?
What new expenses are you facing because of the injury?
How have your sports, social and recreational activities changed because of the injury?” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″][/tagline_box]