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

Disabil Rehabil. 2016 Aug 22:1-11. [Epub ahead of print]

Knox L(1,)(2), Douglas JM(1,)(2), Bigby C(1).

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. Implications for Rehabilitation Previous research
has identified that the experience of sustaining TBI has a significant impact on
a person's conceptualization of self. This study identified that decision-making
experiences play an important role in the ongoing process of
self-conceptualization after injury. Decision-making experiences can reinforce a
person's self-concept or lead them to revise (positively or negatively) their
sense of self. By maximizing the person's decision-making participation, those
around them can support them to develop positive self-attributes and contribute
to shaping their future goals. 

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