By Carolyn Scott, Ph.D., CBIST
Rainbow Rehabilitation Centers
Brain injury affects more than just the individual with the injury; families also experience a wide range of reactions and disruptions to their daily lives. To help address these stressors, Rainbow Rehabilitation Centers offers a support group open to the community.
The support group meets once a week for eight weeks to provide educational information and a venue for peer support. Each of the weekly meetings is designed to provide helpful information and spur conversation. Because each attendee brings a different level of knowledge to the meetings, the depth of coverage and resulting conversation can vary depending on the audience.
In the first week, functional neuroanatomy is reviewed, providing family members with an opportunity to develop a greater understanding of their family member’s injury. Families gain insight into how brain injury is expressed similarly and differently in individuals.
The next three weeks cover the physical, cognitive, and emotional/behavioral changes common after traumatic brain injury (TBI). Often it is the cognitive and behavioral complications of an injury that stresses the family the most. When your family member is unable to communicate or recognize you, it can be heart-breaking. Similarly, if the individual is impulsive and inappropriate, it can feel isolating or frustrating. Families benefit from an opportunity to see how others in their same position cope with and manage challenging behaviors or changes in cognition and physical ability. Evidence-based strategies for managing these changes is also presented.
The last four sessions focus on healthy coping strategies including effective communication. Family members often take on the role of advocate and caregiver after a catastrophic brain injury. Communication skills are essential in these new roles. Additionally, it is essential that family members communicate their own needs in order to reduce caregiver burn-out and process the many emotions and thoughts that occur after a lifechanging event. Grief and loss are also discussed.
Ultimately, the goal of the educational portion of the support group is for families to feel more comfortable with their understanding of TBI and confident in how to manage the different challenges that may arise. We hope that family members feel empowered to manage their multiple stressors.
Additionally, the support group is designed to allow families to meet others in similar situations and, ideally, build support networks. While their circumstances may have been different prior to the injury, the common bond of TBI seems to draw families together. Families often keep in contact with one another even after they leave Rainbow. They are each other’s cheerleaders and shoulder on which to cry.
A recent participant stated the following about the support group:
We enjoyed the group so much. Thank you for making it available to us. It was nice to be with others who are in the same boat as we are and be allowed to share what we are feeling and going through. It was very uplifting knowing that all of you at Rainbow know our struggle and are there to support us. Thank you all so much for everything you did and still do. You all have become a part of our family. Love to all!
Research has demonstrated the importance of social support. For instance, caregivers who felt that they had adequate social support reported better life satisfaction and were better able to cope with some of the negative consequences of brain injury.1 This is only one of many examples available which reflect the importance of a support network.
For more information about Rainbow Rehabilitation Centers’ family support group, email FamilySupport@rainbowrehab.com. Childcare is available with a reservation. If you need a group closer to home, visit biami.org or call neighborhood hospitals to find potential options.
1. Ergh TC, Hanks RA, Rapport LJ, Coleman RD. Social support moderates caregiver life satisfaction following traumatic brain injury. Journal of Clinical and Experimental Neuropsychology. 2003; 1090-1101.