Self-care narratives by people with a traumatic brain injury

Abstract

Traumatic brain injury is one of the leading causes of death and disability in the North America, and can result in long-term physical and psychological consequences, which over time change brain injury from a medical problem to an issue of quality of life. Various self-care activities can significantly improve the quality of life in people living with a chronic health condition. However, research on self-care in these populations has focused on the physical aspect of self-care, often excluding other domains of functioning. There is minimal self-care research involving people who had a traumatic brain injury; however, it is important to understand how they experience and make sense of their injury and its consequences in order to develop more effective approaches to their rehabilitation and support systems. In this study, I interviewed adults with traumatic brain injury who had their injury at least two years prior to the study. Narrative analysis of their stories revealed that the participants faced the following difficulties: constructing an explanation for the injury, dealing with losses and limitations, feeling misunderstood and insignificant, and dealing with memory deficits and physical problems. The ways in which participants tried to overcome these difficulties was understood as self-care. It manifested in a variety of ways, including deliberate health-related behaviours, changes in one’s way of thinking, emotional regulation strategies, and linguistic and paralinguistic means used in the narratives. I discuss ways to understand the findings using different theoretical models, such as illness narratives, social disenfranchisement, and social disability models. The results of the study strongly suggest that our understanding of self-care should encompass both physical and psychological health.