Abstract
Background:Traumatic brain injury (TBI) is a life-altering condition, and delays to care can significantly impact outcomes. In Uganda, where nurse shortages are prevalent, patients’ family members are the primary caretakers of these patients and play an important role in ensuring patients’ access to timely care. However, caretakers often have little or no knowledge of appropriate patient care. Caretakers’ ability to navigate the healthcare system and find and use health information to support their patients can impact delays in seeking, reaching, and receiving care.Objectives:This study seeks to determine the factors that impact TBI patient caretakers’ health literacy and examine how these factors influence delays in care.Methods:This study was carried out in the Mulago National Referral Hospital neurosurgical ward, where 27 adult caretakers were interviewed using semi-structured, in-depth, qualitative interviews. “The Three Delay Framework” was utilized to understand participants’ experiences in seeking, reaching, and receiving care for TBI patients. Thematic content analysis and manual coding was used to analyze interview transcripts and identify overarching themes in participant responses.Findings:The main health literacy themes identified were Extrinsic, Intrinsic and Health System Factors. Nine sub-themes were identified: 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. Financial Burdens, Government Support, Emotional Challenges, Physician Support and Lack of Medical Resources were recurring factors across the three delays.Conclusion:The health literacy factors identified in this study influence caretakers’ functional health literacy and delays to care in a co-dependent manner. A better understanding of how these factors impact patient outcomes is necessary for the development of interventions targeted at improving a caretaker’s ability to maneuver the healthcare system and support patients in resource-poor settings.
Highlights
Traumatic brain injury (TBI) is a life-altering condition, and delays to care can significantly impact outcomes
In addition to its detrimental effects on health, TBI presents a financial burden to families, healthcare systems, and economies through lost productivity and high healthcare costs [2]
We evaluate the factors that affect the functional health literacy of caretakers of TBI patients in a tertiary care hospital in Uganda and how they influence delays in seeking, reaching, and receiving care
Summary
Traumatic brain injury (TBI) is a life-altering condition, and delays to care can significantly impact outcomes. Nine sub-themes were identified: 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. Depending on the diagnosis and severity of illness, caregivers may engage in various care tasks such as wound care, medication and symptom management, transportation, and the provision of emotional support [6] These tasks are relevant in a neurosurgical ward, where many TBI patients are immobile and unable to speak or comprehend instructions. They are an essential source of health information for patients and assist in decision-making throughout the care continuum
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