The Patient Experience of Acute and Post-Acute Care for Mild Traumatic Brain Injury: A Qualitative Phenomenological Study Using Focus Groups

Abstract

Follow-up care for traumatic brain injury (TBI) in the United States ranges from inconsistent, at best, to non-existent most predominantly. The present study aimed to gather patient perspectives on acute and post-acute TBI care using a phenomenological approach guided by the Patient Experience Framework, Chronic Care Model, and Health Literacy Framework. Using a pre-defined, semi-structured interview guide, including four groups of 35 diverse people diagnosed by a medical provider with “mild” TBI within 24 months, the study qualitatively explored their patient care experience, the care they received, and the care they felt they needed. Participants were 57% male, 43% female, 59% Caucasian, 28% African American, and 13% Latino, with a mean age of 43 years (range: 24–67). Four interconnected themes emerged representing critical failure points in the patient experience continuum: (1) foundational knowledge deficits that created barriers to care engagement; (2) critical touchpoint failures in acute care that minimized injury significance; (3) care transition failures and educational inadequacy during discharge; and (4) absence of longitudinal care and support systems. Participants possessed minimal brain injury knowledge and held fatalistic beliefs about recovery. Health care interactions consistently minimized TBI significance, with the term “concussion” conveying insignificance. Discharge occurred when cognitive capacity was most compromised, representing failed transitions rather than effective handoffs. Follow-up care was virtually absent, leaving participants to navigate complex symptom patterns without professional guidance. Psychological trauma remained unaddressed, and community support emerged as a critical unmet need. Current TBI care delivery fails patients at multiple touchpoints across the care continuum. When interpreted through established theoretical frameworks, these failures represent systemic breakdowns requiring comprehensive solutions rather than isolated improvements. Effective TBI care requires reframing TBI, including mild TBI, as a chronic condition that may require sustained support, implementing systematic education approaches that account for cognitive impairments, providing proactive follow-up care, and addressing the full spectrum of patient experience challenges including psychological sequelae and community support needs.