Living in a reshaped reality: Exploring social participation and self-identity after TBI

ABSTRACT

Individuals with a moderate to severe traumatic brain injury (TBI) experience substantial changes in their life. This constructivist grounded theory study aimed to develop an explanatory model that explores the impact of changes in social participation and self-identity after sustaining a TBI. Sixteen participants with moderate to severe TBI (mean age = 49.8, 69% male) were recruited, and were on average 16.4 years post-injury (SD = 10.4). Data from semi-structured interviews were analysed thematically. An overarching theme of “living in a reshaped reality” was identified, which depicted how changes in social participation and self-identity influenced ongoing experiences with TBI. Three main themes were generated: (1) “there's nothing that's the same” highlighted the daily challenges individuals faced post-injury, (2) “rebuilding and restarting” described how individuals with TBI navigated through their unfamiliar reality, and (3) “embrace it and run with it” explored participants’ reactions towards life with a TBI. An explanatory model was developed, consisting of the overarching theme (“living in a reshaped reality”) with the three integrated themes. Future research and clinical practices can build on this understanding to develop programmes to help individuals address their needs in post-injury life.

KEYWORDS:

• Traumatic brain injury
• Grounded theory
• Social participation
• Self-identity
• Lived experiences
• Qualitative data

Acknowledgements

The authors would like to express their gratitude to the participants who took part in this study as well as the BC Brain Injury Association for assistance in recruitment. The authors would also like to thank research assistants Anika Cheng and Rebecca Tsow for their help in the data collection.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the UBC Hampton Fund Research Grant [F19-05072] and Social Sciences and Humanities Research Council – Insight Development Grant [AWD-018858].