An exploration of the experience of self in the social world for men following traumatic brain injury

Abstract

This study explores the lived experience of male survivors of traumatic brain injury (TBI) in relation to perceived changes in their personal and social identity. The aim was to provide an understanding of the individuals' sense of self and sources of emotional distress and growth following injury. Semi-structured interviews were conducted with nine male survivors of TBI (aged 22-59 years). These men were 17 months to 21 years post-injury and were recruited through a UK holistic neuropsychological rehabilitation centre. Transcripts of their accounts were analysed using thematic analysis. Identified dominant themes related to the men's described experience of changes in self relating to their social world, were titled: "abnormality", "hidden", "the old-me-new-me" and "others treat me differently". In response to these emotional experiences the themes of "self-criticism", "need to be as others want me to be" and "withdrawal" emerged. The identified themes are considered alongside the alternative narrative of "positive growth" in relation to current understanding of identity and "self-conscious" emotions. Future research and clinical implications are suggested.

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

“…This finding brings together previous literature identifying that people with TBI report being positioned by others as being passive and dependent [53,54,76] and that acting independently is, therefore, central to rebuilding a positive identity [38] and living a productive life. [77] Participants in this study described that being independent was both an attribute, which they demonstrated through participation in decision making, and a goal.…”

“…The number of participants in this study, while relatively small, is comparable with similar studies [6,38,40,41,53,54,101]. Further, undertaking multiple interviews with participants supported the generation of rich qualitative data, from which several key themes clearly emerged and the relationship between decision-making participation and self-conceptualization was developed.…”

“…[55,80,81] There is a growing body of research illustrating the impact of TBI on self-conceptualization. [1,37,38,42,53,54,82,83] Based on the findings of previous research, several possible links between decision-making participation and self-conceptualization were identified. The findings of this study provide evidence that the process of decision making affords a medium through which a person fashions the self.…”

“…[52] Adults with TBI have reported how their self-concept is shaped through their interactions with others, noting that their individuality is overlooked by others [41] and that they are perceived to be "marginalized and dependent". [53] Freeman et al [54] described the impact of social interactions in shaping self-concept and its potential implications for decision making. In response to feelings of guilt and shame resulting from their interactions with others, participants in their study described that they withdrew from social interactions and/or followed the lead of others rather than feeling that they were able to exercise autonomy in their own lives.…”

Review of the literature on the use of social media by people with traumatic brain injury (TBI)

“…However, loss of communication skills for those with a significant TBI is common due to cognitive-communicative deficits, which can have wide-ranging consequences socially [13][14][15]18,23]. It is common for people with TBI to lose friends within the first year after injury and there are often notable difficulties after TBI in maintaining and building social networks [13,[23][24][25], including changing relationships and communication with family members [26][27][28]. Their ability to socialise and to build or maintain relationships is often greatly impaired [13,15,18].…”