Family Issues

TBIs affect not just the person injured but the entire family as well – family members are often unrecognized victims of TBI.

The Family System

Smiling Hispanic familyThe family is a system in which each family member has specific roles (e.g., the father is the primary disciplinarian).

When a person within a family sustains a TBI,his/her ability to fulfill his/her roles is affected.

As a result, other family members must take on those roles.

This shifting in roles can be a source of great distress for family members.

  • Healthy vs. Unhealthy Family Dynamics
  • Practical Issues
  • Common Reactions from Specific Family Members
  • Key Points for Family Members

Healthy vs. Unhealthy Family Dynamics

Families are functional systems that are constantly adjusting to changes over time (e.g., growing independence of children leads to changes in parents’ roles). However, few changes are as abrupt and dramatic as those that happen following a traumatic injury to a family member. Each family member will have his/her own way of coping with changes to the family system following a TBI.

The experiences and reactions of family members will evolve over time, as adjustments and accommodations are made given the injured person’s cognitive and emotional difficulties. The goal is to help families achieve a new equilibrium, wherein the injured person and other family members take on new, appropriate roles. Below are general ideas of healthy vs. unhealthy family dynamics following TBI.

Healthy Family Dynamics

  • New roles are reassigned to family members who are capable of fulfilling those roles.
  • Individual family members are allowed/encouraged to continue to meet their own personal needs and to pursue their own goals.

Unhealthy Family Dynamics

  • Family members remain rigid in their roles, such that no one compensates for the loss of contribution by the family member with TBI.
    • Important needs may be left unfulfilled.
  • Family members overcompensate for problems experienced by injured family member.
    • Family may make injured family member the center of family life, such that other family members do not have needs met and/or are not encouraged to pursue their individual goals.

General Reactions to TBI

Early Stages Post-Injury

  • Family members experience shock, disbelief, and grief regarding loved one’s injury.
    • May deny potential long-term consequences of TBI to the injured person and the family.
      • Some denial may not be harmful, as long as it does not prevent the injured person from receiving needed care.
  • Family members experience significant stress during acute rehabilitation associated with:
    • Balancing the desire to be present with their injured family member during rehabilitation with their need to manage other responsibilities (e.g., job, caring for other family members).
    • Lack of knowledge regarding TBI and resources for people with TBI.
    • Fears of the long-term prognosis.

Months/Years Post-Injury

  • Family members may struggle to manage practical aspects of injured person’s need for assistance (e.g., supervision).
  • Adjustment to new roles in family system (e.g. mothering a spouse) can be distressing in the early stages and thereafter.
    • Many families adjust to these new roles, but grief regarding the loss of prior family roles may recur.
  • Family members often experience a sense of loss related to changes in important aspects of life before the TBI (e.g., reduced time to socialize).
  • Family members may experience frustration with the injured person’s ongoing difficulties, and may also feel guilt that they are frustrated.
  • Family members often experience grief regarding the loss of a hoped-for future (e.g., that their child would attend college, that they would enjoy an active retirement with their spouse).
  • Financial issues may be prominent due to costs associated with medical care and loss of income from wages.
  • Changes in the family system may result in a reduced focus on the needs of other family members (e.g., siblings of injured child).

Common Reactions from Family Members

Siblings may:

  • Feel jealous that sibling is getting all of the attention
    • Older children may at the same time feel guilty for having this thought.
  • Wonder if the accident was somehow their fault.
    • Particularly younger children may mistakenly conclude that they are responsible for the injury (e.g., if they at one time in anger had wished their sibling would go away and never come back)
  • Feel guilty that it was their sibling and not them.
  • Experience depression.
  • Feel they cannot ask for caring/help from parents due to concerns of over-burdening them.
  • Show their emotional distress in social and academic problems in school.
  • Experience teasing about their sibling in school.
  • Have difficulties knowing how to interact with their changed sibling.

Spouses may:

  • Feel angry at spouse for getting injured (not necessarily a rational reaction, but a common one).
  • Feel frustrated with and resent the level of care the spouse requires.
  • Grieve over the loss of the relationship of equals that characterizes marriage.
  • Feel frustrated and/or sad with changes in their physical and sexual relationship with their spouse.
  • Feel overwhelmed and fearful of how they will manage the future (e.g., financially, practically, emotionally).
  • Feel abandoned by friends, family who may not fully understand the complex demands of having a spouse with a TBI.
  • Feel anger and/or grief regarding the loss of independence.
  • Experience significant stress in attempting to juggle the needs of spouse and children.

Parents may:

  • Be angry at the child for getting injured (not necessarily a rational reaction, but a common one).
  • Feel frustrated with and resent the level of care the child requires.
  • Tend to fall back into an over-protective role that was necessary when child was younger but may not be appropriate for older child (even after sustaining TBI).
  • Feel anger and/or grief over loss of independence.
  • Feel frustrated if they have other children who also need them, and yet also feel guilt for not being as attentive to the other children’s needs.
  • Worry about their child’s long-term future.
  • Grieve over the loss of hope regarding child’s future potential.
  • Have difficulties accepting a new vision of how child may function in the world and have a good quality of life.
  • Feel responsible for the child’s progress following the injury.

Key Points for Family Members

  • Role changes caused by TBI in the family are naturally stressful
  • Anger, frustration and sorrow are normal reactions to having a loved one with a TBI.
  • Family members must also take care of themselves to be effective caregivers for their loved ones with TBI.
  • The person with TBI may never be the same person they were before, yet they can have positive relationships and lead satisfying lives.
  • It’s OK to ask for help! (See Resources section.)
  • Look for new sources of social support (e.g., Brain Injury support groups)
  • Sometimes what the person with TBI wants is not necessarily what is best for them, and it’s OK to use your judgment when deciding about this.