Severe Brain Injury and Family Experiences

A few researchers sat with families and interviewed them about their experiences following a severe brain injury (Stenberg, Stalnacke, & Saveman, 2022). Their findings were interesting, but I’m sure they are not a surprise to families living with brain injury. Here are their findings. Do any of their findings sound familiar to you?

• Loneliness. All families reported feeling of loneliness. These feelings lasted 7 years or more for spouses/partners.

  • Many families attributed feelings of loneliness to a lack of understanding from other people regarding the brain injury. Some talked about how their support network of friends and family began to drop off once recovery slowed. Many began to decline invitations to events with friends and family members.

  • The injured family member also experiences loneliness. One of the reasons for this is that they have no memory of the event (due to being unconscious or experiencing prolonged amnesia). They must rely on others to fill in the gaps which adds to feelings of isolation. Other factors that contribute to feelings of loneliness include decreased self-confidence, other people’s inability to accept that he/she is changed or different, decreased activities outside the home (i.e., work, school, leisure, etc.), and feelings of guilt and sorrow over what their families have experienced.

• A Few Things that Helped. Family beliefs are important for recovery. Outside networks are also important for sustained stability. Some families use humor. Other families state that they rely on positive thinking. Some family members connect to others through social media. Journaling helps some people. Having a family member that is able to provide a sense of stability helps create a sense of security.

• Adapting as a Family. Researchers separated this by three categories.

  • To be usual. Some families state that recovery and entrance back into their “normal” lives happened quite quickly and unexpectedly. Some felt that they had returned to work a little too soon, but still expressed gratitude about being able to return to work or school.

  • To be somewhat unusual. Families realize that they must adapt and accommodate changes that will be long lasting. An injured family member states that he realizes that he will “just have to learn to live like this.”

  • To be quite unusual. These families described life as “stopping” or changing drastically. For these families, their “new normal” was very different from the life each lived prior to the injury. These families face many, many stressors and challenges.

Any thoughts about their findings?

Do you see yourself or your family in the research?

Reference

Stenberg, M., Stalnacke, B., & Saveman, B. (2022). Family Experiences Up to Seven Years After a Severe Brain Injury – Family Interviews. Disability and Rehabilitation, 44:4, 608-616

Emily Watson, LMFT
Emily Watson Counseling