Exploring the experience of fatigue for people with a traumatic brain injury and their carers to inform evidence-based clinical management

About the Project

The aim of this study is to understand the experiences of people with traumatic brain injury (TBI) and post-TBI fatigue and their support needs, including the secondary impact on their carers. Participants are people with TBI who attend the Brain Injury Rehabilitation Outpatient Review Clinic and report fatigue and along with their carer consent to complete quantitative measures of their fatigue and their experiences across two timepoints. Interpretive description will be employed to explore the experiences of TBI related fatigue. It is anticipated that this study will enhance clinical understanding of the impact of fatigue on patients and carers and assist with planning appropriate supports and intervention along the trajectory of brain injury rehabilitation continuum of care.

View the latest online presentation delivered by the project team at Hopkins Hour research event

Project significance and expected outcome:

Fatigue after TBI is a complex, common, and persistent issue for people with TBI and their carers. It has been noted to significantly impact the first 12months of rehabilitation and recovery that is addressed across inpatient, transitional and outpatient brain injury rehabilitation programs with a secondary impact on family members and/or carers that is significant and distressing. There is an urgent need for this complex phenomenon to be understood so that an appropriate management program can be developed, trialed and implemented within these rehabilitation programs.

The project group has found:

·         Patients describe fatigue as debilitating and consuming and “the worst part of recovery” with it being a significant recognised barrier to getting back to usual roles and feeling good within themselves.

·         Patients and carers do not know to expect fatigue to the degree it is experienced and do not recall being told about fatigue while in hospital, nor aware of it until discharged from hospital.

·         Differences in how fatigue is felt by patients but primarily physical, mental, and psychological fatigue is reported.

Project Status:

The project commenced in 2020 and has grown in leaps and bounds – winning the annual Research Translation Award for 2020. The project group is working on their final data analysis, publications and development of education resources for fatigue management.

Project Funding:

This project is funded by a Hopkins Centre Seed Grant and the Motor Accident Insurance Commission (MAIC).

The project is proudly supported by Griffith University and the Division of Rehabilitation at Princess Alexandra Hospital, Metro South Hospital and Health Service.

Research Team: 

Janelle Griffin - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service 

Prof Louise Gustafsson - THC, Griffith University 

Ms Rebecca Seeney - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service 

Dr Ryan Bell - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service 

Mr Robin Franklin - Citizen Researcher

Dr Amanda Pigott - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service

Ms Kylie Bower - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service 

Dr Emily Gibson - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service

Ms Simone Cahill - Division of Rehabilitation, Princess Alexandra Hospital, Metro South Hospital and Health Service