Lead/Presenter: Traci Abraham,
COIN - North Little Rock
All Authors: Abraham TH (Center for Mental Healthcare & Outcomes Research, Central Arkansas Veterans Healthcare System, North Little Rock, AR), Ono SH (Center to Improve Veteran Involvement in Care, VA Portland Health Care System, Portland, OR), Bender RE (Center to Improve Veteran Involvement in Care, VA Portland Health Care System, Portland, OR) Facundo R (South Central Mental Illness Research, Education & Clinical Center, Southeast Louisiana Veterans Health Care System, New Orleans, LA) Winter L (Philadelphia Research and Education Foundation, Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, PA) Moriarty H (7. Philadelphia Research and Education Foundation, Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, PA) True G (6. South Central Mental Illness Research, Education & Clinical Center, Southeast Louisiana Veterans Health Care System, New Orleans, LA)
To engage informal caregivers (i.e. family and/or friends who provide care and support) of Veterans with a diagnosis of traumatic brain injury (TBI) in identifying sources of stress and unmet needs.
We used a participatory action research approach called photovoice. Twenty-six caregivers of Veterans with a TBI were provided with digital cameras and asked to take photographs illustrating their perspectives and experiences on living with and supporting a Veteran with a TBI. Caregivers were interviewed using their photographs as a prompt; transcripts were analyzed using a modified grounded theory approach.
Caregivers described providing different forms of intangible care centered on emotions (i.e., emotion work) that were typically unrecognized and unacknowledged by others. Emotion work largely involved creating a "new normal" for Veterans, keeping things calm, and suppressing their own inner feeling states. Although participants derived a sense of satisfaction and identity from their roles as caregivers, many also described experiencing negative impacts from performing emotion work.
Informal caregivers provide essential emotional care that supports the community reintegration of Veterans with invisible injuries such as TBI; this work often goes unrecognized and may be a cause of significant burden. Many Veterans with TBI do not receive adequate treatment and services to help them manage emotional dysregulation, negatively impacting their social worlds, including their caregivers.
Services and programs to support Veterans with TBI and other invisible injuries should target symptoms and behaviors that exacerbate emotional dysregulation to counter negative impacts on their loved ones. Programs supporting informal caregivers should include recognition of the emotion work they perform and provide access to strategies to mitigate the burden of this work upon caregivers.