Jeffrey S. Kreutzer, Ph.D., ABPP is a Professor of Physical Medicine and Rehabilitation, at Virginia Commonwealth University (VCU), Medical College of Virginia Campus. He serves as Director of Virginia’s federally designated Traumatic Brain Injury Model System and coordinates VCU Health System outpatient services for persons with brain injury. A founding member of the Brain Injury Association of Virginia, Dr. Kreutzer is a neuropsychologist and psychotherapist with more than three decades experience developing, providing, and evaluating brain injury services. A primary developer of the Resilience and Adjustment Intervention, he has published more than 160 peer reviewed papers including several on resilience. Dr. Kreutzer is the Editor-in-Chief of the Encyclopedia of Clinical Neuropsychology, and in 2010 he received the Distinguished Lifetime Contribution to Neuropsychology Award from the National Academy of Neuropsychology. In September 2013 he received the North American Brain Injury Society Award for Innovations in Treatment.
WORLD CONGRESS PRESENTATION
Jennett Plum Lecture: Lessons Learned about Caregivers after Traumatic Brain Injury
Many persons who sustain a traumatic brain injury encounter formidable challenges that may span years or even a lifetime. Common neurocognitive challenges include impairments of memory, word finding, attention and concentration, problem solving and executive skills. Adverse personality changes are frequently reported as well. A good number of survivors are described as irritable and easily angered. Research suggests a high incidence of depression, anxiety, and posttraumatic stress disorder. Not surprisingly, many survivors are unable to maintain employment or live independently.
Early on, much of our professional attention was deservedly focused on survivors’ acute medical care and rehabilitation needs. Yet, in the long-term, we have learned that family members take on important responsibilities, with wives and parents most often taking on the primary caregiving role. Over the last several decades, clinicians and clinical researchers have shown increasing interest in understanding caregivers’ needs and developing effective interventions to mitigate their emotional distress. This presentation will provide a historical context for understanding and treating caregivers after brain injury.
Town hall style meetings have helped identify caregivers’ needs. We have learned that many caregivers neglect their personal needs, focusing, 100% on their family member who survived injury. Post-discharge, many caregivers feel abandoned by medical and rehabilitation providers. Lezak was among the first to write about the needs and reactions of family members. She proposed an adjustment model and wrote about the value of counseling. Mauss-Clum and Ryan, acute care nurses, were among the first to quantify the emotional reactions of wives and mothers to neurobehavioral change. Their work suggests that wives experience overwhelmingly greater distress than mothers and other survivors. Later, Jacobs pointed out that family members are most likely to serve as long-term caregivers despite their limited training. Jacobs’ work suggested that developing training and education programs for caregivers could benefit their emotional well-being as well as improve survivor’s neurobehavioral functioning.
This presentation will describe research with families and caregivers conducted at Virginia Commonwealth University (VCU) over the last quarter century. Initial studies at VCU identified survivor’s neurobehavioral functioning as the most salient predictor of caregivers’ distress. To quantify family members’ needs VCU rehabilitation researchers developed the Family Needs Questionnaire which helped identify caregivers’ needs rated as most important, most often met, and most often unmet. This presentation will also review research on marital breakdown and marital satisfaction. An overview of a treatment program, the Brain Injury Family Intervention (BIFI), will be provided. The presentation will conclude with a discussion of ambiguous loss, a concept initially described by Pauline Boss.