Evaluating the Influence of Patient Caretakers’ Health Literacy on Delays in Care for Traumatic Brain Injury Patients at Mulago National Referral Hospital, Uganda.

Background Caretakers take on caregiving tasks such as feeding and administering oral medication for patients at Mulago National Referral Hospital (MNRH), Uganda and many Low-Middle Income Countries (LMICs) where nurse shortages are prevalent. They shoulder the burden of caretaking responsibilities with little or no knowledge of the patient care. Studies have shown that caretaker’s ability to navigate the healthcare system, find, and use health information to support their patients throughout the care continuum can impact the three delays in care: seeking, reaching and receiving care. With the life-threatening nature of Traumatic Brain Injuries (TBI) in Uganda, caretakers’ play an important role in ensuring patients access care in a timely manner. This study seeks to determine the factors that impact TBI patient caretakers’ health literacy in MNRH and examine how these factors influence the three delays in care. Methods This qualitative research study was carried out in the neurosurgical ward at MNRH, in northern Kampala. The study participants were 27 adult caretakers. Semi-structured in-depth qualitative interviews, outlined through “The Three Delay Framework”, was utilized to understand participants’ experiences with delays in seeking, reaching and receiving care for moderate to severe TBI patients. Thematic content analysis and manual coding was used to analyze interview transcripts and identify overarching themes in the participant responses. Results This study identified three main caretaker health literacy factors, each with three sub-factors, that impact the three delays to care. The main themes identified were Extrinsic, Intrinsic and Health System Factors. The nine sub-themes were Government Support, Community Support, Financial Burdens, Lack of Medical Resources, Access to Health Information, Physician Support, Emotional Challenges, Navigational Skills and Understanding of Health Information. These components were found to influence the delays to care to varying degrees. More importantly, Financial Burdens, Government Support, Emotional Challenges, Physician Support and Lack of Medical Resources were recurring health literacy factors across the three delays. Conclusion The health literacy factors identified in this study work to influence caretakers’ functional health literacy and the delays to care in a co-dependent manner. A better understanding of how these factors impact patient outcomes is necessary for the development of context and culturally relevant interventions targeted at improving a caretaker’s ability to maneuver the healthcare system and support patients in resource-poor settings. There is a strong need for the state and policy makers to invest in improving health education and communication strategies to support caretakers’ health literacy needs and mitigate the delays to care for TBI patients.