Family Caregiver Experiences With Neurobehavioral Changes in Traumatic Brain Injury Survivors: A Qualitative Exploration of Needs and Concerns

Research Objectives: Traumatic Brain Injury (TBI) neurobehavioral changes are prevalent, fluctuating, and multifaceted, requiring perspectives from survivors, caregivers, and interdisciplinary providers. The primary aim is to explore the needs and concerns of TBI caregivers pertaining to observed survivor neurobehavioral changes. The secondary aim is to describe the impact of neurobehavior changes on caregivers.

Design: Qualitative description, using remote semi-structured interviews among moderate to severe TBI caregivers. A content analysis approach, data were organized into a priori themes of pre-determined categories of neurobehavior changes: cognitive, emotions, somatic, disruptive, and positive.

Setting: Caregivers were targeted purposively from community-based caregiver support organizations, support groups on social media, and a level one trauma center in the Midwest.

Participants: Family caregivers of persons who survived moderate to severe TBI at any stage of the recovery trajectory (N=20). Caregivers were eligible if both caregiver and survivor were 18 years or older. Caregivers of TBI survivors who resided in a nursing home or long-term care facility were excluded.

Interventions: Not applicable

Main Outcome Measures: Not applicable

Results: Majority of the caregivers were female (85%), white (75%), and spouses (60%) or parents (30%) of the TBI survivor, with a mean age of 56 years. The most concerning neurobehavior changes were memory problems, anger, impulsivity, lack of initiation, and depression. Positive changes in survivors include compassion, acts of service, and resilience. The impact of these behaviors on caregivers included physical injuries, stress, depression, ambiguous loss, isolation, and unhealthy family functioning. Themes that emerged regarding caregiver needs included: 1) informational needs on neurobehavioral changes prognosis/treatment; 2) access to mental health support and trained neurorehabilitation providers; 3) social integration programs for survivors; and 4) legal, financial, and health coverage needs.

Conclusions: The identification of family caregivers needs and concerns provides a unique perspective to understand neurobehavioral changes. Findings from this work provide insights for future measurement and intervention opportunities.

Author(s) Disclosures: This work was funded by Beta Iota Chapter of Sigma Theta Tau International. The authors declare no conflict of interest.