Patients' and caregivers' perspectives on healthcare navigation in Central Indiana, USA after brain injury

Little research has documented the experiences of patients with traumatic brain injury (TBI) and their caregivers in navigating health systems for TBI care. In this qualitative study, we conducted semi-structured interviews with 62 participants (34 patients with moderate or severe TBI and 28 caregivers) from Central Indiana. Data were collected from January to September 2016 and analysed using a constructivist grounded theory approach. Participants discussed three significant challenges about navigating health services for TBI care: lack of support for care navigation, financial barriers, and communication barriers. Participants described how navigating outpatient healthcare services for TBI remains complex and emphasised the need for ongoing care navigation support throughout the care continuum. They detailed the long-term financial burden of TBI including high treatment costs, limited insurance coverage, and the emotional toll that financial stress has on their ability to navigate healthcare services for ongoing TBI-related needs. They also discussed how ineffective patient-provider communication and lack of reliable, timely and comprehensive health information about TBI limited their engagement in and navigation of TBI health services. Findings suggest that persons with TBI and their caregivers need ongoing support to manage the long-term impacts of TBI. Efforts to provide care coordination and navigation to patients with TBI and their families are urgently needed to facilitate greater access to care, effective healthcare navigation and improved health outcomes.