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Title: The lived experience of behaviours of concern after traumatic brain injury: A qualitative study.
Authors: Gould, Kate
Hicks, Amelia
Ponsford, Jennie
Other Authors: Hopwood, Malcolm
Kenardy, Justin
Krivonos, Iveta
Warren, Narelle
Keywords: Brain Injury
Traumatic Brain Injury
Behaviours of Concern
Lived Experience
Socially Inappropriate Behaviour
Sense of Self
Social Relationships
Social Isolation
Accident Compensation Schemes
Transport Accident Commission
Qualitative Studies
Monash-Epworth Rehabilitation Research Centre, Epworth HealthCare, Victoria, Australia
Rehabilitation, Mental Health and Chronic Pain Clinical Institute, Epworth HealthCare, Victoria, Australia
Issue Date: May-2016
Citation: Brain Injury. 2016 May; 30(5-6): 533
Conference Name: International Brain Injury Association’s Eleventh World Congress on Brain Injury. March 2-5, 2016
Conference Location: The Hague, Netherlands
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.
DOI: 10.3109/02699052.2016.1162060
Type: Conference Paper
Affiliated Organisations: Department of Psychiatry, University of Melbourne, Melbourne, Victoria, Australia
Schools of Medicine and Psychology, The University of Queensland, Brisbane, Queensland, Australia
School of Social Sciences, Faculty of Arts, Monash University, Melbourne, Victoria, Australia
Type of Clinical Study or Trial: Survey
Appears in Collections:Mental Health

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