Projects

Interventions to support family caregivers with managing challenging behaviours

STUDY CONTEXT

This work is being conducted as part of a larger interprovincial team grant funded by the Ontario Neurotrauma Foundation and Reseau Provincial de Recherche en Adaptation Readaptation. The broad objective of the team is to develop interventions for individuals with TBI and their informal caregivers in the chronic phase of recovery.

THE PROBLEM

The family system is an important target for intervention to optimize community integration following traumatic brain injury (TBI). Families are the primary source of support for individuals with TBI in the long-term, and often function with limited supports of their own, as evidence suggests that social network size and access to rehabilitation reduce over time. One of the major sources of stress for families is managing neurobehavioural issues. Clinical practice guidelines for the rehabilitation of adults with moderate to severe TBI recommend “providing the family and key members of the support network with education about the potential causes of behaviour, possible antecedents and triggers, management strategies as well as possible side effects of medication”. A recent systematic review examining the effectiveness of interventions involving families in behaviour management programs in the community did not have a consistently defined definition of challenging behaviour, and found that studies rarely described exactly how families were involved in the intervention.  

OBJECTIVES

Our long-term goal is to develop, evaluate and implement an intervention that will support families with managing challenging behaviours. Our specific objectives in the current study are: 1) To understand the behaviours of concern from the perspective of families living with someone with TBI, and the strategies used to manage; and 2) To describe the components of family oriented interventions in peer-reviewed published literature and classify them according to how neurobehavioural issues are addressed

METHODS

To address objective 1 we plan to conduct a qualitative study using narrative methods. We will recruit family caregivers supporting individuals with TBI and impairment in social cognitive functions (e.g., theory of mind, self-regulation) that contribute to challenging behaviours. We will recruit through community based brain injury services in Ontario and Quebec. Narrative interviews will be conducted to explore their experiences of challenging behaviours, how they have changed over time, and strategies that they use to manage the behaviour and support the participation of individuals with TBI. Data will be analysed using a narrative approach. To address objective 2 we plan to conduct a scoping review. A comprehensive search will be developed including the concepts family intervention, traumatic brain injury and challenging behaviour. Data will be extracted including, bibliographic information, study design, population, intervention components and content related to assessment and management of neurobehavioural issues. Intervention strategies will be classified according to behaviour change theory.

EXPECTED RESULTS

The study findings will help to define the critical components of interventions designed to support families with managing challenging behaviour. It will also help to better define the behaviours of concern, and how they may affect families differently, to support the design of the intervention and future trials. Additionally, we will use the data to develop a compendium of strategies used by families to manage challenging behaviours that will be disseminated immediately as a resource through community brain injury associations.   

TIMELINE

Refine protocol and obtain ethics qualitative study (Jan-May 2018); recruitment & data collection (April – Dec 2018); analysis and manuscript preparation (May 2018 – March 2019). Scoping review to be completed as part of an MSc student research and will occur concurrently beginning Sep 2018.

CO-INVESTIGATORS

• Carolina Bottari
• Karl Zabjek
• ONF-REPAR Traumatic Brain Injury Team