Targeted areas for improving health literacy after traumatic brain injury

Objective: To develop a framework to identify targeted areas for improving health literacy for caregivers after traumatic brain injury (TBI). Method: Qualitative study using inductive and deductive qualitative content analysis was conducted in a large, urban, level I trauma centre. Interviews were conducted with 23 caregivers of persons with TBI. Participants’ perspectives on communication and preparation for discharge were explored and understanding of commonly used words and discharge instructions were assessed. Results: Four types of communication patterns were identified: formal, informal, indirect and caregiver-initiated. Informal and caregiver-initiated communication were the most common. All caregivers reported confusion about their family member’s condition, care plan or discharge plan. Caregivers were not able to define commonly used terms in discharge instructions, and were confused by formatting and medical language. Caregivers were not aware of expected caregiving roles upon discharge. Conceptualizing findings within a family-centred care model, we offer specific strategies to improve health communication and caregiver capacity building to enhance health literacy. Conclusions: Health literacy and caregiver capacity to care for loved ones with TBI after hospital discharge is low. We offer specific target areas for improvement in verbal and written communication and capacity building that take into account provider, patient and family characteristics.