Health status, difficulties, and desired health information and services for veterans with traumatic brain injuries and their caregivers: A qualitative investigation

Abstract

Traumatic brain injury (TBI) is considered the signature injury among military service member and Veterans who served in Operation Iraqi Freedom and Operation Enduring Freedom with over 360,000 individuals sustaining a first-time TBI in the military. These service members and Veterans, and their caregiver(s), must navigate multiple health systems and find experts across many fields of expertise to recover and optimize functionality. Twenty-two individuals, 10 caregivers of Veterans with TBI, 12 Veterans with TBI, participated in semi-structured interviews. Responses were coded using NVivo. Participants from both groups reported difficulties finding community supportive services (support groups) in local communities. Most participants identified the need for an advocate or point-person to help guide them to needed services and provide ongoing support in the post-acute health care recovery phase. Caregivers and Veterans desired a more personalized recovery plan from their medical professionals. When describing their ideal health information and services model most identified interactivity and twenty-four-hour availability as essential components. To provide Veterans and caregivers with optimal support and resources to navigate a complicated health services system, advocates and personalized care plans are needed. Future research should examine the feasibility and cost-effectiveness of these services.

The Secondary Impact of Mild Traumatic Brain Injury: An Interpretative Phenomenological Analysis of the Experiences of Family Members

“…Participants struggled to make sense of the disease process, and experienced guilt at missing earlier opportunities to support the person with mTBI. This echoed findings that symptoms develop and change over time (Tenovuo et al, 2021) and information (Silverberg et al, 2020) and medical support can be sporadic (Holloway et al, 2019), leaving caregivers of people with TBI to make the best decisions they can, while being aware that they lack capacity (Graff et al, 2018; Koehmstedt et al, 2018). For participants, this seemed to create a fertile ground for hindsight guilt (hindsight bias [Klein et al, 2017; Fischhoff, 1975] resulting in guilt), where past decisions are interpreted as though participants had had present knowledge.…”

“…Participants in the present study experience care ending after 3 months. Koehmstedt et al (2018) suggest that the ideal TBI caregiver information would be part of a long-term care plan, although it is not clear how this relates to mTBI, since Koehmstedt et al (2018) did not discuss the severity of TBI. For the families of people with TBI in the Townshend and Norman (2018) study, patient education is perceived as inadequate for them to fully participate in recovery.…”

Transitions of care interventions to improve quality of life among patients hospitalized with acute conditions: a systematic literature review

“…Acute conditions are sudden, severe in their onset, and often require immediate medical attention that results in hospital admission [ 5 ]. Patients who are hospitalized for acute conditions and their families could benefit from transitional care [ 6 , 7 ], as transitional care management in a variety of patient populations has led to improved patient and family outcomes, including improved patient QOL [ 3 , 8 ]. However, there are limited standards to guide transitional care of patients with acute conditions and the current state of “usual care” during the transition from acute hospital care to home has limited provider support or engagement to help patients and families navigate and access fragmented health and community-based services during the transition home from the hospital [ 9 , 10 ].…”