Care coordination experiences of people with traumatic brain injury and their family members in the 4-years after injury: a qualitative analysis

Abstract

Title: Care coordination experiences of people with traumatic brain injury and their family members 4-years after injury: A qualitative analysis. Aim: To explore experiences of care coordination in the first 4-years after severe traumatic brain injury (TBI). Methods: A qualitative study nested within a population-based longitudinal cohort study. Eighteen semi-structured telephone interviews were conducted 48-months post-injury with six adults living with severe TBI and the family members of 12 other adults living with severe TBI. Participants were identified through purposive sampling from the Victorian State Trauma Registry. A thematic analysis was undertaken. Results: No person with TBI or their family member reported a case manager or care coordinator were involved in assisting with all aspects of their care. Many people with severe TBI experienced ineffective care coordination resulting in difficulty accessing services, variable quality in the timing, efficiency and appropriateness of services, an absence of regular progress evaluations and collaboratively formulated long-term plans. Some family members attempted to fill gaps in care, often without success. In contrast, effective care coordination was reported by one family member who advocated for services, closely monitored their relative, and effectively facilitated communication between services providers. Conclusion: Given the high cost, complexity and long-term nature of TBI recovery, more effective care coordination is required to consistently meet the needs of people with severe TBI.