Mapping the rehabilitation journey of patients with traumatic brain injury in China: a qualitative study

Traumatic brain injury (TBI) rehabilitation involves a complex, multi-stage journey across various healthcare settings. However, current research still lacks a comprehensive understanding of this process from the patient's perspective. A detailed mapping of the patient journey is crucial for designing targeted and effective rehabilitation strategies.

A qualitative interpretative research design was performed and the standards for reporting qualitative research (SRQR) has been used.

To construct a patient journey map visualizing the rehabilitation care experiences of adult TBI patients, identify key pain points and service gaps, and provide recommendations for service optimization.

A qualitative interpretative research design was employed, guided by the Patient-Centered Healthcare Accessibility Framework. Using purposive sampling, 26 TBI patients were recruited from five healthcare settings in a major Chinese city between February and July 2024. Data were collected through 78 semi-structured interviews and 156 h of non-participant observation across acute care, rehabilitation, and community settings. Thematic analysis was conducted using Braun and Clarke's six-phase framework, followed by process mapping and journey visualization.

The TBI rehabilitation journey comprised three distinct phases: Acute Treatment Phase (2-8 weeks), Continuous Rehabilitation Phase (3-18 months), and Rehabilitation Community Integration Phase (ongoing). Nine emotional states were identified throughout the journey, ranging from fear and helplessness in the acute phase to acceptance and hope in the community integration phase. Thirteen core rehabilitation needs were prioritized across phases. Nineteen significant pain points were categorized into system-level (n = 6), provider-level (n = 7), and patient/family-level barriers (n = 6), with service discontinuity affecting 84% of participants.

The TBI rehabilitation journey is characterized by complexity, non-linearity, and significant service fragmentation. Findings highlight the urgent need for integrated, patient-centered care models with enhanced care coordination, standardized pathways, and comprehensive family support systems. The patient journey map provides a framework for systematic service improvement and policy development.