The following review is written in 2 parts: one by a brain injury survivor and another by a rehabilitation psychologist.
As a service provider for individuals with brain injury and their families, I am always interested in finding useful "bibliotherapy" materials to help guide people through the challenges of living with brain injury. I often hear survivors and their loved ones bemoan the short supply of useful educational materials when they were needed: "If only we had had more information early on, it would have made a huge difference." It is likely that the timely provision of such information can actually improve outcomes and facilitate coping.1,2 In evaluating written materials designed for persons with brain injuries and their friends and families, I hope to find accessibility, clarity, accuracy, concision, thoroughness, and frankness. Unfortunately, balancing these qualities in one publication is no easy feat. Thoroughness and accuracy often come at the expense of concision, clarity, and accessibility. Living Life Fully After Brain Injury is generally successful in this balancing act and, despite its shortcomings, is to be recommended. It is the result of a collaboration between researchers at the University of Washington TBI Model System and the Model Systems Knowledge Translation Center and Lash and Associates Publishing and was funded, in part, by National Institute on Disability and Rehabilitation Research grants. The authors are generally leading experts in the brain injury field.
The weaknesses of Living Life Fully After Brain Injury include an assumption that its readers are based in the United States, writing that is often at the level of a college text book, and some rather starchy chapters, which read more like research review articles than self-help literature. These issues will likely limit the book's audience. Furthermore, some content risks becoming outdated fairly quickly, including information on technology (eg, no mention of iPhone apps) and legislation (eg, no mention of ObamaCare) as well as Web page addresses. Hopefully, the publishers will make updates available online. Furthermore, the "miserable minority" of individuals with mild TBI who have long-term disability receive very little attention, a significant omission. A lack of information on dealing with changes in sexual function after brain injury is also a lost opportunity.
But the workbook's strengths are manifold too. Its scope is laudably broad, with sections on a wide range of medical, psychological, vocational, behavioral, and interpersonal issues. There is even a business-like chapter on veterans with brain injury that is replete with information of use to this population. Where appropriate, the workbook has a solid foundation in empirical research. Many of the chapters are exemplary in their thoroughness, clarity, and tone. For example, a superb section on substance abuse helps readers identify their "relationship" with alcohol, taking into account both patterns of use and readiness to change, and empowers them to address misuse in a variety of ways including harm reduction approaches and abstinence. It is a model of even-handedness and neutrality that will likely be of use even to those drinkers who are unwilling to acknowledge substance misuse. Likewise, an outstanding chapter on depression, anxiety, and emotional challenges is conversational without being condescending and provides self-tests to help readers identify emotional problems and range of potential ways to address those problems, including strategies for cultivating resilience and nurturing positive emotions. Sometimes the information provided is quite dense (eg, in a chapter covering the complex issues of return to school after brain injury) but it is valuable to have this information gathered in one place. The workbook is full of worksheets of a generally high quality, which may prove equally useful to survivors and service providers, and these are collected on an accompanying CD to facilitate storage and printing. Another plus is the attempt to reflect the voices of survivors throughout the book by peppering it with relevant quotations. While their authenticity is sometimes doubtful, the message that survivors' voices must be heard is unmistakable.
Reasonably priced, this workbook is to be recommended for college-educated individuals whose cognitive difficulties do not interfere with reading comprehension. In addition to being of help to individuals with brain injury and their caregivers and loved ones, it will likely be of use to brain injury advocates and service providers as an informational resource and as a way of enriching treatment. Efforts of this kind are to be applauded and it is hoped that the editors will seek input from individuals with brain injuries to make future editions even more useful and accessible.
-Joshua Cantor, PhD, ABPP
Mount Sinai School of Medicine
New York City, New York
Each of the 12 chapters in Living Life Fully After Brain Injury delves deeply into critical aspects of carrying on-if not quite living life fully-with this infirmity, whether so-called mild, moderate, or severe. Topics range from behavioral and cognitive changes to employment, depression, and the use and abuse of medications. Each issue is critical for the target audience to understand and master, an audience clearly stated in its subtitle: A Workbook for Survivors, Families, and Caregivers.
All issues related to brain-injury recovery will be new to most family members, friends, and even professional caregivers, who will no doubt find new research results of interest. Because it is up to these formal and informal caregivers to oversee the nurturing and healing of the survivor and spoon-feed helpful strategies to enable us to carry on one more day, their challenges cannot be underestimated.
So, the workbook's strength is also its weakness: Each chapter is a standalone article written by one or several PhDs (often as though for a scholarly journal), and each varies significantly in detail, tone, and application. What is missing is the translation for people without advanced or even high-school degrees, which comprise much of the world, I'm afraid. The word "workbook" implies that the user can dive right in and assumes a level of coherence throughout the 12 chapters. The work book would benefit greatly from a summary chapter that ties together the best of whole.
Two excellent chapters: "Neuropsychological Assessment" by Gerner and Schretlen ("... this testing goes beyond my basic IQ and will help me better understand the impact of my injury"), and "Managing Behavioral Changes" by Novack, who writes at the appropriate level, contain content that is informative and instructive; in a word, "actionable." Each of us is looking for what to act on, and Novack handles the subject brilliantly.
More troublesome was the first chapter, which almost made me close the book: "Medical Issues and the Nature of Recovery After Brain Injury. For example, "Most brain injuries, regardless of the cause, fall into the category of mild brain injury. This is also called a concussion" (p4) and "A majority of those with mild brain injury or concussion recover within 1-3 weeks, especially young athletes." Although current literature might bear the author out regarding recovery from mild TBI, it is a lot to stomach when you (and many survivors you know) are in the minority who take 3 steps forward and then 1, 2, 3, and sometimes 4 steps back. And the word "especially" in the second quotation tells me that the author is not willing to discuss the difference in plasticity between young and older brains. Do young brains heal faster than older brains, or are they actually far more susceptible to long-term damage than her research tells her? And finally, the 2 sentences that, as a 7-year veteran in these brain-injury wars and battles, especially unnerved me: "A slower recovery does NOT mean that you or your family member is doomed to permanent brain dysfunction. Our brains, fortunately, will naturally recover and function-our job is to help expedite that recovery, stay healthy, and help ourselves cope during the recovery process." I agree that we are not doomed but the longer our recovery, the less likely that we will fully regain all of our cognitive functioning and more normal personal behaviors. This contradicts the sunny and grossly unfair statement that our brains will naturally recover and function. As the Psalmist said, "How long, O Lord. How long?"
Ultimately, of course, if this book is the sole resource for them, it is up to the very determined survivor, family member, and caregiver to mine for gold if they are committed to the survivor's living life more fully. (They will find that when the quality of the survivor's life improves, so will theirs.) The gold is there, but most of these quite average human beings will need far more advanced gold-extraction tools than they possess. That's a shame given the amount of work and expense obviously expended, and I would hate to see the good and the gold in this book go unmined. A redesign of this workbook with actual users in mind and reality-tested with them would transform this rich but complicated, and in some places maddening, offering to the brain-injury community.
-John C. Byler
TBI Survivors Network
Author, "You Look Great!"--Strategies for Living Inside a
Brain Injury, http://www.TBIstrategies.com.
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