Resources for Clinicians
Self-Awareness
Difficulties with self-awareness affect roughly 50-60% of individuals with severe TBI and predict poor long-term social outcomes. Individuals with reduced self-awareness are unable to self-monitor behaviour and have difficulty adjusting to life with a disability, which ultimately affects their personal, occupational and social relationships. Heightened self-awareness following TBI can also be problematic, as people struggle to adjust to their new capabilities and identity compared to their pre-injury self. This can decrease self-esteem and increase the risk of developing adjustment disorders, such as depression and anxiety.
General Overview
Meet the Expert: Self-Awareness and Brain Injury - Professor Tamara Ownsworth from Griffith University provides an overview of her research and its aims within the field of self-awareness as it relates to brain injury.
Changes in Self-Awareness after Brain Injury - Professor Tamara Ownsworth from Griffith University gives an overview of how a person affected by brain injury can experience changes in self-awareness.
Expert Advice for Patients and Families Affected by Brain Injury - Professor Tamara Ownsworth from Griffith University provides expert advice for patients and families affected by brain injury.
Impaired Self-Awareness and Brain Injury - Impaired self-awareness or a lack of insight into one’s abilities and limitations is common after a traumatic brain injury. Synapse strives to reconnect the lives of those affected by brain injury. Here, they have prepared a factsheet on impaired self-awareness and brain injury.
The Caregiver’s Journey: Self-Awareness – As a caregiver it can be difficult to manage the changes that occur in your family member following a brain injury. The Centre of Excellence for Medical Multimedia develops interactive patient education programs. They have prepared a short guide on self-awareness, what you might see and how you may help your loved one.
Understanding Insight and Self-Awareness after Brain Injury– Queensland Health Acquired Brain Injury Outreach Service explains possible causes of lack of insight, how it can be managed in their information sheet on insight and self-awareness after brain injury.
Understanding Brain Trauma – Moving Ahead Chief Investigators, Professor Skye McDonald (UNSW) and Professor Jennie Ponsford (Monash University), provide expertise regarding the mechanisms and rehabilitation that arise after a brain injury to Catalyst reporter, Dr Maryanne Demasi.
Understanding and managing traumatic brain injury – Moving Ahead Chief Investigator, Professor Jennie Ponsford (Monash University), provides a thorough overview of TBI, including – the mechanisms of injury, psychosocial outcomes, rehabilitation following TBI, future directions for brain injury research and more.
Working with people with TBI- Sponsored by the Agency for Clinical Innovation (ACI) in NSW, Australia, the Brain Injury Rehabilitation Network exists to improve rehabilitation outcomes for adults, young people and children following traumatic brain injury (TBI). They do this by supporting clinicians and consumers to develop and implement best practice treatment across inpatient, transitional and community settings through providing self-study modules, toolkits, presenter modules and workplace learning resources.
The Caregivers Journey – The Journey Home website presents six video sessions with Tracy McGrew, a social worker, who guides caregivers of patients with traumatic brain injury through the journey ahead, providing them with challenges, tips and ways to advocate for their loved ones.
Assessments & Remediation
Metacognitive Skills Training: A Treatment for Self-Awareness after Brain Injury - Professor Tamara Ownsworth from Griffith University explains how metacognitive skills training can be used as a treatment for self-awareness after brain injury.
Meet the Expert: Methodology and Outcome Measures for Brain Injury Research - Professor Robyn Tate from the University of Sydney provides an overview of her research and its aims within the field of methodology and outcome measures as it relates to brain injury research.
Measuring Outcomes from TBI - Find basic information on over 100 different instruments that measure outcomes in Global Function; Behavioural Function; Family Environment; Health Related Quality of Life; Social Participation; Language and Communication; Measures of Self; Neuropsychology; Psychological Status; and Social Cognition. Information includes reliability, validity, sensitivity to change, advantages and disadvantages. This is a joint project from the team at the Moving Ahead Centre for Research Excellence in Brain Recovery, in collaboration with expert researchers and clinicians experienced in traumatic brain injury from around the world.
Online Lecture Series: Understanding brain injury and how to work with people with ABI– Sue Sloan is a registered Occupational Therapist and Clinical Neuropsychologist. She has worked in brain injury rehabilitation for over 40 years and has developed a strong interest in long-term rehabilitation where individuals experience complex cognitive-behavioural problems. Sue has published a series of six online lectures exploring brain injury and how to work with people who have acquired brain injury.
ASSBI – Since 1978, Australasian Society for the Study of Brain Impairment (ASSBI) has provided a unique forum for multi-disciplinary research and clinical practice for Australasian professionals working in brain impairment by offering annual continuing education opportunities through training, workshops, webinars and resources including assessments, treatments and books.
Lash & Associates Publishing / Training Inc. – This publishing company is the leading source of information on brain injury in children, adolescents, adults and veterans for over 20 years. They provide practical and informative books, tip cards, manuals, tool kits, attention training, and cognitive rehabilitation programs on traumatic and acquired brain injury, concussion, and post-traumatic stress disorder (PTSD). Written for survivors, veterans, families, clinicians, therapists, educators, advocates, and caregivers, their products can be used in hospitals, rehabilitation programs, community agencies, schools, private practice, and home.
Publications
2016
Beadle, E.J., Ownsworth, T., Fleming, J., & Shum, D. (2016). The Impact of Traumatic Brain Injury on Self-Identity: A Systematic Review of the Evidence for Self-Concept Changes. Journal of Head Trauma Rehabilitation,31(2), 12-25. DOI: 10.1097/HTR.0000000000000158
Knox, L., Douglas, J., & Bigby, C. (2016). “I won’t be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychological Rehabilitation, 26(2), 236-260. DOI: 10.1080/09602011.2015.1019519
Ownsworth, T. & Haslam, C.w (2016). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26(1), 1-35. DOI: 10.1080/09602011.2014.977924
2015
Douglas, J. (2015). Elizabeth Usher Memorial Lecture: Placing therapy in the context of the self and social connection. International Journal of Speech-Language Pathology, 17(3), 199-210.
DOI: 10.3109/17549507.2015.1016113
Douglas, J., Bigby, C., Knox, L., & Browning, M. (2015). Factors that Underpin the Delivery of Effective Decision-Making Support for People with Cognitive Disability. Research and Practice in Intellectual and Developmental Disabilities, 2(1), 37-44. DOI: 10.1080/23297018.2015.1036769
Ownsworth, T. (2015). To Err is Human; to Self-Regulate After Brain Injury, Divine. Brain Impairment, 16(3), 236-242. DOI: 10.1017/BrImp.2015.26
Reddy, A., Ownsworth, T., King, J., & Shields, C. (2015). A biopsychosocial investigation of changes in self-concept on the Head Injury Semantic Differential Scale. Neuropsychological Rehabilitation. DOI: 10.1080/09602011.2015.1114499
Richardson, C., McKay, A., & Ponsford, J. (2015). Factors influencing self-awareness following traumatic brain injury. Journal of Head Trauma Rehabilitation, 30(2), 43-54.
DOI: 10.1097/HTR.0000000000000048
Schmidt, J., Fleming, J., Ownsworth, T., & Lannin, N.A. (2015). An occupation-based video feedback intervention for improving self-awareness: protocol and rationale. Canadian Journal of Occupational Therapy, 82(1), 54-63. DOI: 10.1177/0008417414550999
2014
Doig, E., Kuipers, P., Prescott, S., Cornwell, P., & Fleming, J. (2014). Development of self-awareness after severe traumatic brain injury through participation in occupation-based rehabilitation: mixed methods analysis of a case series. American Journal of Occupational Therapy, 68(5), 578-588. DOI: 10.5014/ajot.2014.010785
Gregório, G.W., Gould, K.R., Spitz, G., van Heugten, C.M., & Ponsford, J.L. (2014). Changes in self-reported pre- to postinjury coping styles in the first 3 years after traumatic brain injury and the effects on psychosocial and emotional functioning and quality of life. Journal of Head Trauma Rehabilitation, 29(3), 43-53. DOI: 10.1097/HTR.0b013e318292fb00
Ownsworth, T. & Haslam, C. (2014). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26(1), 1-35. DOI: 10.1080/09602011.2014.977924
Ponsford, J., Kelly, A., & Couchman, G. (2014). Self concept and self-esteem after acquired brain injury: a control group comparison. Brain Injury, 28(2), 146-154.
DOI: 10.3109/02699052.2013.859733
Richardson, C., McKay, A., & Ponsford, J.L. (2014). Does feedback influence awareness following traumatic brain injury?. Neuropsychological Rehabilitation, 25(2), 233-253.
DOI: 10.1080/09602011.2014.936878
Richardson, C., McKay, A., & Ponsford, J.L. (2014). The trajectory of awareness across the first year after traumatic brain injury: the role of biopsychosocial factors. Brain Injury, 28(13-14), 1711-1720. DOI: 10.3109/02699052.2014.954270
Schönberger, M., Ponsford, J., McKay, A., Wong, D., Spitz, G., Harrington, H., & Mealings, M. (2014). Development and predictors of psychological adjustment during the course of community-based rehabilitation of traumatic brain injury: A preliminary study. Neuropsychological Rehabilitation, 24(2), 202-219. DOI: 10.1080/09602011.2013.878252
Tate, R., Kennedy, M., Ponsford, J., Douglas, J., Velikonja, M., Bayley, M., & Stergiou-Kita, M. (2014). INCOG Recommendations for management of cognition following traumatic brain injury, part III: executive function and self-awareness. Journal of Head Trauma Rehabilitation, 29(4), 338-352. DOI: 10.1097/HTR.0000000000000068
2013
Douglas, J.M. (2013). Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Injury, 27(1), 60-74. DOI: 10.3109/02699052.2012.722254
Kelly, A., Ponsford, J., & Couchman, G. (2013). Impact of a family-focused intervention on self-concept after acquired brain injury. Neuropsychological Rehabilitation, 23(4), 563-579.
DOI: 10.1080/09602011.2013.795903
Ownsworth, T., Fleming, J., Tate, R., Shum, D.H., Griffin, J., Schmidt, J., Lane-Brown, A., Kendall, M., Chevignard, M. (2013). Comparison of error-based and errorless learning for people with severe traumatic brain injury: study protocol for a randomized control trial. Trials, 14, 369.
DOI: 10.1186/1745-6215-14-369
Ownsworth, T., Stewart, E., Fleming, J., Griffin, J., Collier, A.M., & Schmidt, J. (2013). Development and preliminary psychometric evaluation of the Self-Perceptions in Rehabilitation Questionnaire (SPIRQ) for brain injury rehabilitation. American Journal of Occupational Therapy, 67(3), 336-344. DOI: 10.5014/ajot.2013.007625
Schmidt, J., Fleming, J., Ownsworth, T., & Lannin, N.A. (2013). Video feedback on functional task performance improves self-awareness after traumatic brain injury: a randomized controlled trial. Neurorehabilitation and Neural Repair, 27(4), 316-324.
DOI: 10.1177/1545968312469838
2012
Schmidt, J., Fleming, J., Ownsworth, T., Lannin, N., & Khan, A. (2012). Feedback interventions for improving self-awareness after brain injury: A protocol for a pragmatic randomised controlled trial. Australian Occupational Therapy Journal, 59(2), 138-146.
DOI: 10.1111/j.1440-1630.2012.00998.x
Evidence-Based Practice
PsycBITE™ is a joint initiative between Professor Robyn Tate (University of Sydney), Dr Michael Perdices (Royal North Shore Hospital), Professor Leanne Togher and Dr Anne Moseley (University of Sydney) and Professor Skye McDonald (UNSW). PsycBITE™ is a free database that includes all trials that have been published that evaluate treatment for any behavioural, communication, cognitive or psychological disorders arising from any form of acquired brain impairment in children (above the age of 5 years) and adults. As of July 2016 there are over 5000 treatment studies listed on PsycBITE™ with prospective searches being conducted on a regular basis. To enter the database click www.psycbite.com.
Click here to find out why PsycBITE™ is a useful resource for clinicians from Moving Ahead Chief Investigator, Professor Robyn Tate (University of Sydney).
The Risk of Bias in N-of-1 Trials (RoBiNT) Scale: An Expanded Manual for the Critical Appraisal of Single-Case Reports - The PsycBITE Group has developed the RoBiNT Scale that makes it possible to judge how well a single-case experimental study has been conducted. This scale not only helps readers judge how good a study is, but it also provides clear guidance in how to conduct a good study. The manual provides examples of good, mixed and poor studies, focusing on fifteen different aspects of a study, for example, whether the study used an acceptable design, whether raw data was provided, whether assessments were conducted in a non-biased fashion and how data was analysed.
Why is it important for clinicians to use evidence-based research in practice? - Professor Robyn Tate from the University of Sydney answers why it's important for clinicians to use evidence-based research in practice.
Value of Single-Case Research Design in Brain Injury Rehabilitation - Professor Robyn Tate from the University of Sydney discusses the value of single-case research design in brain injury rehabilitation.
Translating Single-Case Research into Practice: The Example of "Alan" - Professor Robyn Tate from the University of Sydney provides an example of how to translate single-case research into clinical practice using the example of "Alan".
The Evidence-Based Review of Moderate To Severe Acquired Brain Injury (ERABI) is a joint project to develop an evidence-based review of the literature for rehabilitation or rehabilitation-related interventions for acquired brain injury (ABI). The principle of the ERABI is to improve the quality of ABI rehabilitation by synthesizing the current literature into a utilizable format and laying the foundation for effective knowledge transfer to improve programs and services.
The Speech Pathology Database for Best Interventions and Treatment Efficacy, known as speechBITE, is a free searchable database on the internet designed to assist speech pathologists in evidence-based clinical decision making. Launched in 2008, speechBITE is a joint initiative between the University of Sydney and Speech Pathology Australia led by Chief Investigator Professor Leanne Togher. speechBITE has more than 3000 references from peer-reviewed published journals on treatment for communication and or/swallowing disorders across the lifespan. Methodological ratings for randomised controlled trials, non-randomised controlled trials and single-case experimental designs are also available on speechBITE. To enter the database click www.speechbite.com.
OTseeker is a database that contains abstracts of systematic reviews, randomised controlled trials and other resources relevant to occupational therapy interventions. Most trials have been critically appraised for their validity and interpretability. In one database, OTseeker provides fast and easy access to information from a wide range of sources to inform occupational therapy.
PEDro is the Physiotherapy Evidence Database. PEDro is a free database of over 37,000 randomised trials, systematic reviews and clinical practice guidelines in physiotherapy. For each trial, review or guideline, PEDro provides the citation details, the abstract and a link to the full text, where possible. All trials on PEDro are independently assessed for quality. These quality ratings are used to quickly guide users to trials that are more likely to be valid and to contain sufficient information to guide clinical practice. PEDro is produced by Musculoskeletal Health Sydney, School of Public Health at the University of Sydney and is hosted by Neuroscience Research Australia (NeuRA).
External Resources
- Understanding TBI - The University of Washington MSKTC and the TBI Model Systems in the United States developed a four-part series designed to help consumers understand traumatic brain injury.
- TBI InfoComics - The TBI InfoComics are a project of the University of Washington Traumatic Brain Injury Model System study (TBIMS) in the USA, which began in 2013. The TBI InfoComics were created to educate survivors of TBI, their families and/or caregivers, and healthcare providers about common symptoms of TBI and how to manage them.
- Clinical Neuropsychologist, Dr Glen Johnson from Michigan, USA, provides a clear understanding of what happens after a head injury and discusses commonly asked questions in his online book titled Traumatic Brain Injury Survival Guide. Dr Johnson wrote this book with the goal of better preparing the head injured person and family for the recovery that lies ahead.
- Understanding Brain Injury: A Guide for the Family - The Mayo Clinic in the USA developed this booklet contains information on the human brain, causes of acquired brain injury, the recovery process, and behavior, communication and physical changes after brain injury. It also outlines examples of stressful behaviours and situations that people with brain injury may experience.
- Brain Injury Australia - This acquired brain injury (ABI) advocacy body works at a national level to ensure that all people living with ABI have access to the support and resources they need to optimise their social and economic participation in the community.
- Synapse - Formerly known as the Brain Injury Association of Queensland, Synapse seeks to be the lead community-based organisation in QLD Australia providing support, advocacy and information to people with an ABI, their families, and to individuals or organisations that share the ABI experience in any way and for any reason.
- Liverpool Brain Injury Rehabilitation Unit - Located at Liverpool Hospital in NSW, Australia, the LBIRU has established a national and international reputation for outstanding research in the rehabilitation of people with TBI. This Unit not only provides rehabilitation services for people with TBI, but also provides various resources for people living with a brain injury and their families.
- BrainLink - Located in Victoria, Australia, this service is dedicated to improving the quality of life of people affected by brain conditions by providing information and support to those affected and their families. BrainLink has a library that offers books, articles and videos about children and young people with ABI and their families.
- The International Brain Injury Association - IBIA is dedicated to the development and support of multidisciplinary medical and clinical professionals, advocates, policy makers, consumers and others who work to improve outcomes and opportunities for persons with brain injury.
- Brain Injury Association of America - BIAA is the United States of America’s oldest and largest nationwide brain injury advocacy organization. Their mission is to advance awareness, research, treatment and education and to improve the quality of life for all individuals impacted by brain injury. Through advocacy, they help provide hope and healing to millions of individuals living with brain injury, their families and the professionals who serve them.
- BrainLine - This national multimedia project is a service of WETA, the public TV and radio station in Washington, DC. USA. BrainLine offers information and resources about preventing, treating, and living with TBI, including a series of webcasts, an electronic newsletter, and an extensive outreach campaign in partnership with national organizations concerned about traumatic brain injury.
- Model Systems Knowledge Translation Centre (MSKTC) - The MSKTC is a national center in the USA that helps facilitate the knowledge translation process to make research meaningful to those with spinal cord injury (SCI), traumatic brain injury (TBI) and burn injury (Burn).
- The Journey Home - The Centre of Excellence for Medical Multimedia’s Traumatic Brain Injury (TBI) webiste provides an informative and sensitive exploration of TBI, including information for patients, family members, and caregivers. Topics include types and symptoms of brain injury, TBI treatment and recovery, and helpful insights about the potential long-term effects of brain injury. Animation is used to help patients clearly understand the brain, and the results of injuries to different parts of the brain. Survivors and their caregivers share courageous stories about their own experiences, providing down-to-earth facts along with inspiration and hope.
- Headway - the brain injury assocation - Headway is the UK-wide charity that works to improve life after brain injury. Through its network of more than 125 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields.