Family Members and Caregivers Need Support

Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families.[1] Most people with TBI live with their families, and it is estimated 2.5 million caregivers are supporting a person with a TBI.[2] Some families experience substantial emotional and financial burdens from such caregiving.[3]

Psychological distress is highly prevalent among family members. It may be experienced as depressive symptoms, anxiety, social isolation, diminished quality of life, worse perceived health, financial distress, family conflict, and communication and marital problems.[4]  Family members of veterans with TBI may be more vulnerable to caregiver stress relative to civilian families because of stress from multiple and lengthy deployments before the veteran’s return home.  Also, veterans with TBI often have additional conditions, such as posttraumatic stress disorder (PTSD), that may increase their family’s vulnerability to stress.

The intangible and often invisible work of family members, for example, “creating a new normal,” and suppressing their emotions “to put on a brave face,” is typically not appreciated by others.[5] Families and caregivers for persons with TBI need support to carry out their caregiving roles, and to sustain their own physical and mental health and well-being.[6] Therefore, TBI care must incorporate addressing family and caregiver needs.

DLH partners in research and academia are designing improved methods to assess the effectiveness of treatments and learning the best ways to help family members cope with the effects of TBI and support their loved ones.

Many persons with TBI are dependent upon family members and other caregivers to navigate health care and community services, and to facilitate community integration.[7] In studies, interventions such as problem-solving training for family caregivers, peer mentorship for both the person with TBI and family members, or an in-home intervention program for veterans with TBI and their families were associated with decreases in depression for family caregivers, increased community reintegration for family members, and lessening the experience of burden by family caregivers, respectively.[8] Family and caregiver tools and resources from organizations like these examples, and others, may be helpful for finding support, education, family caregiver support groups, etc.  (Note:  many are free, and some may charge a fee.)

• Brain Injury Association of America (BIAA) and BIAA Community Caregiver Information Center
• Patient and Family Resources. Military Health System Traumatic Brain Injury Center of Excellence

Citations:

[1] H Moriarty, et al. Exploration of Factors Related to Depressive Symptomatology in Family Members of Military Veterans With Traumatic Brain Injury.  J Fam Nurs. 2018 Aug;24(2): 184-216. https://doi.org/10.1177/1074840718773470

[2] National Academies of Sciences, Engineering, and Medicine. Traumatic Brain Injury: A Roadmap for Accelerating Progress 2022. Washington, DC: The National Academies Press, 118. https://doi.org/10.17226/25394.

[3] Ibid., 2.

[4] Ibid., 129.

[5] Ibid., 130.

[6] Ibid., 133.

[7] Ibid., 6.

[8] Ibid., 131.

[9] Caregiver Information Center. Brain Injury Association of America. www.biausa.org.

[10] Patient and Family Resources. Military Health System. Traumatic Brain Injury Center of Excellence. https://health.mil/Military-Health-Topics/Centers-of-Excellence/Traumatic-Brain-Injury-Center-of-Excellence/Patient-and-Family-Resources