The experience of challenging behaviours following severe TBI: A family perspective

Abstract

Primary objective: Family caregivers play an important role in managing challenging behaviours after TBI. The aims of this study were to understand how family caregivers of individuals with TBI perceive challenging behaviours and their impact on the TBI individual’s community integration and family functioning.

Research design: A qualitative research design was employed to capture the lived experience of family caregivers of individuals with TBI.

Methods and procedures: Face-to-face interviews were conducted on six female family caregivers of individuals with severe TBI (sustained an average of 17 years earlier) and long-standing challenging behaviours.

Main outcomes and results: The results revealed that family caregivers adopted a broader definition of challenging behaviour than that used by professionals and these behaviours impacted on the community integration of the individual with TBI, most notably leading to poor social relationships. Challenging behaviours were viewed as a key source of distress and burden for family caregivers and they used many different strategies to manage the behaviours.

Conclusion: Greater understanding of challenging behaviours from the perspectives of family caregivers may help provide more effective support and interventions to improve quality-of-life for individuals with challenging behaviours after TBI and their families.

• Community integration
• coping
• family experience
• thematic analysis
• traumatic brain injury

Acknowledgments

We are grateful to the family caregivers for their time and willingness to share their experiences.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.