A window into the reality of families living long term with challenging behaviours after a TBI

ABSTRACT

Challenging behaviours are a long-term burden for people with traumatic brain injury (TBI) and their families. Families frequently shoulder the responsibility alone, but little is known about the strategies they use to manage these behaviours. This study aimed to 1) identify the coping strategies used by people with TBI living in the community and their family caregivers to manage challenging behaviours; and 2) describe the similarities and differences between strategies used by people with TBI and caregivers. In this qualitative descriptive design, individual semi-structured interviews were conducted with adults with TBI and their caregivers and were inductively analyzed. The sample included 10 dyads and two triads, totalling 12 caregivers (8 women) and 14 individuals with TBI (6 women; 21.71 ± 10.84 years post-injury). Participants’ strategies were proactive (prevention), reactive (response), or retroactive (aftercare). Most strategies were described by caregivers. Some of them were effective and lasting, others not, reflecting how they adapted their approaches over time. Families put in place various strategies in their life’s journey, such as giving feedback or adapting the environment. Despite these strategies supporting long-term community living, the need for ongoing support is underscored, as crises may still occur, impacting families’ quality of life.

KEYWORDS:

• Coping strategy
• Challenging behaviours
• Brain injuries
• Quality of life
• Caregiver

Acknowledgments

We would like to thank Alison Ann Balshaw, Estelle Therrien, Rym Ben Lagha, Anissa Belkir and Justine Boucher who contributed to the data analysis. Our sincere thanks go to the stakeholders and associations that played a key role in the recruitment process, including the Regroupement Connexion TCC.Qc, the Association québécoise des traumatisés crâniens, the Association des Traumatisés Cranio-Cérébraux de la Montérégie, the Association des TCC des Deux Rives and the Centre d’Aide Personnes traumatisées crâniennes et handicapées physiques Laurentides. Finally, we would like to express our sincere thanks to all the participants in this study. Your willingness to share your profound and moving life experiences was crucial to the completion of this study. Without your participation, this research would not have been possible.

Disclosure statement

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

Additional information

Funding

This research was made possible by a grant from the Ontario Neurotrauma Foundation, the Ontario Ministry of Health and Long-Term Care and the Quebec Rehabilitation Research Network granted to Carolina Bottari and Emily Nalder. Charlotte Hendryckx has received a doctoral grant from the Fond de recherche du (FRQS) (2022-2023 – BF2 – 312902), as well as grants from the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, from MITACS, and from the Quebec Rehabilitation Research Network. In addition, Nadia Gosselin holds a Canada Research Chair in Sleep Disorders and Brain Health, and Emily Nalder holds a Tier 2 Canada Research Chair in Resiliency and Rehabilitation funded by the Canada Research Chairs Program.