"I’ve never been a yes person": Decision-making participation and self-conceptualization after severe traumatic brain injury

<p>Purpose: Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI. Method: We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved. Results: Self-conceptualization emerged as a complex and multifaceted process, as individuals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an individual’s social support network in acting as a bridge between participation and self-conceptualization is presented. Conclusions: Findings emphasize that contributing to decisions about one’s own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person’s participation in the decision-making process.</p>