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

Abstract

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.