Improving Family Understanding of in-Hospital Communication and Discharge Instructions after Traumatic Brain Injury

Theoretical Background and research questions/hypothesis:  Despite the importance of health communication and health literacy as a mechanism to improve outcomes and decrease disparities, there is little research on traumatic brain injury (TBI)-related communication and health literacy. TBI is a significant public health problem: every year approximately 1.2 million adults and 500,000 children sustain a TBI. Those with moderate to severe TBI face a long recovery and often have long-term disability with ongoing care needs. Racial/ethnic and insurance disparities in service use and outcome after TBI have been documented. Due to the unique and complex nature of TBI, families may struggle to address the complex health needs of their injured family member. A specific and tailored focus on TBI-related communication may help families to understand their family member’s care plan and may support their navigation through the complex health care system, ultimately improving patient outcomes.

Methods:  We conducted in-depth interviews with N = 16 family members of persons with TBI being treated in a large, urban, level I trauma center. Semi-structured interviews asked participants about their experience with in-hospital communication and assessed their understanding of commonly used TBI-related words and discharge instructions for patients with TBI.

Results:  Participants were mostly female (76%), with average age of 48 years (range 20-89). 76% of participants were white, 53% had grade-12 education only. At time of interview, average duration of hospital admission was 12 days (range 4-40). 88% of patients had severe traumatic brain injury. Themes included: 1) communication in-hospital often took the form of informal or indirect communication between bedside providers and family members, 2) participants did not understand some words or phrases commonly used in TBI discharge instructions, and 3) many participants were confused about aspects of their family members care and discharge plan. Strategies to improve in-hospital communication and discharge instructions were identified. 

Conclusions:  In-hospital communication and discharge instructions for family members of persons with TBI were marked by informal discussions and resulted in confusion. Strategies identified here to improve communication and discharge planning can likely improve the family experience of care and increase the likelihood of appropriate post-discharge care and follow-up.

Implications for research and/or practice:  Hospitals and providers can improve communication and discharge instructions for persons with TBI and their families with the goal of improving patient outcomes.