The lived experience of behaviours of concern after traumatic brain injury: A qualitative study.

Abstract

Objectives: Behaviours of Concern (BoC), such as aggression, are a debilitating and distressing consequence of traumatic brain injury (TBI). The perspectives of clinicians and family members on BoC have been previously explored, but few qualitative studies have included the perspectives of the individuals with TBI. The aim of this study was to explore the lived experience of BoC and treatment history in individuals with TBI and their family members and/or clinicians. Methods: Primary participants were clients of a no-fault accident compensation scheme (the Transport Accident Commission - TAC), in Victoria, Australia, who had sustained a TBI and were identified as having BoC based on TAC records and a telephone survey with a close other. Semi-structured qualitative interviews were conducted with 13 participants (five TBI individuals, four family or care workers and four clinicians), which were coded and analysed using a six-stage thematic process as described by Braun and Clarke (2006). Rigour was ensured through member checking with participants and inter-rater coding checks. Results: Participants with TBI and their informants described frequent and persistent BoC, particularly physical and verbal aggression and socially inappropriate behaviour, even many years post-injury. Five key themes emerged from the interviews relating to (i) the behaviours, (ii) the journey of managing BoC over time, (iii) self-identity, (iv) social relationships and (v) meaningful participation. The latter three themes represented the impact of and contributors to BoC in the context of the person as a whole and had bidirectional relationships with each other and the former themes. The impact of BoC on relationships and employment was highlighted, leading to social isolation, a loss of sense of self, anger, depression, further frustration and, in turn, aggressive behaviours. TBI-related changes, including reduced insight and rigid thinking, underpinned BoC but were also barriers to intervention for BOC according to clinicians. Conversely, ongoing therapy support and the establishment of a sense of purpose through engagement in hobbies were linked with improved adjustment and reduced BoC. Conclusions: This study demonstrates the benefit of including TBI individuals in qualitative studies and provides greater understanding of the complex factors contributing to and impacted by BoC. The framework developed in this study will inform future interventions designed to reduce BoC and ultimately maximize the quality-of-life in individuals with TBI and their families.