The dual reality of challenging behaviours: Overlapping and distinct perspectives of individuals with TBI and their caregivers

ABSTRACT

Challenging behaviours significantly impact the lives of people with traumatic brain injury (TBI) and their family caregivers. However, these behaviours are rarely defined from the perspectives of both individuals, a necessary step to developing interventions targeting meaningful goals for individuals and caregivers. This study aimed to (1) explore and confirm the perspective of individuals with TBI living in the community and their family caregivers on behaviours they consider challenging and, (2) identify overlapping or distinct views on challenging behaviours. A qualitative descriptive design was used. Twelve caregivers (8 females; 59.67 ± 11.64 years old) and 14 participants with mild-severe TBI (6 females; 43.21 ± 10.98 years old; time post-injury: 21.71 ± 10.84 years) were interviewed (10 dyads and two triads). Data were analysed using inductive qualitative analysis. Challenging behaviours most frequently reported by all participants were aggressive/impulsive behaviours, inappropriate social behaviours, and behavioural manifestations of cognitive impairments. Overlapping perspectives were identified regarding aggressive behaviours. Distinctions exist as inappropriate social behaviours and cognitive difficulties were mainly reported by caregivers. Our results confirm that perspectives may vary between dyad members. Interventions should include dyad inputs to formulate goals that are significant to the person with TBI and their caregiver.

KEYWORDS:

• brain injuries
• cognitive dysfunction
• caregivers
• aggression
• impulsive behaviour

Acknowledgments

We wish to acknowledge Alison Ann Balshaw, Estelle Therrien, Rym Ben Lagha, Anissa Belkir and Justine Boucher for their contributions to data analysis. We would also like to warmly thank the stakeholders of the community associations for people with TBI who greatly contributed to the recruitment of participants (Regroupement Connexion TCC.Qc, Association Québécois des traumatisés crâniens, Association des Traumatisés Cranio-Cérébraux de la Montérégie, Association des TCC des deux rives, Centre d’Aide Personnes Traumatisées Crâniennes et Handicapées Physiques Laurentides). Finally, we would like to thank all the participants of this study who shared their rich and touching life experiences, without whom this study could not have taken place.

Disclosure statement

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

Funder information

This work was supported by a sub-grant from the Ontario Neurotrauma Foundation, the Ontario Ministry of Health and Long-term Care, and the Quebec Rehabilitation Research Network. Charlotte Hendryckx was supported by a doctoral scholarship from the Fond de Recherche du Québec – Santé (2022-2023 – BF2 – 312902). She was also supported by a doctoral scholarship from the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, by MITACS (under a research training grant) and by the Quebec Rehabilitation Research Network (under a doctoral scholarship). Nadia Gosselin holds a Canada Research Chair in Sleep disorder and brain health. Emily Nalder holds a Canada Research Chair (Tier 2) in Resiliency and Rehabilitation funded by the Canada Research Chairs Program.

Additional information

Funding

This work was supported by Canada Research Chairs [Grant Number Resiliency and Rehabilitation,Sleep disorder and brain health]; Centre for Interdisciplinary Research in Rehabilitation [Grant Number Doctoral scholarship]; Mitacs [Grant Number Research training grant]; Ontario Neurotrauma Foundation; Ontario Ministry of Health and Long-term Care; Quebec Rehabilitation Research Network: [Grant Number sub-grant]; Fond de Recherche du Québec - Santé: [Grant Number Doctoral Scholarship]; Réseau Provincial de Recherche en Adaptation-Réadaptation: [Grant Number Doctoral scholarship].