Challenges and Benefits of Family Caregiving in Spinal Cord Injury and Other Neurological Conditions #26

TUE 1 NOV // 1:30 PM – 5:30 PM

Primary Content Focus: Cross-cutting (International, spinal cord injury, brain injury, stroke, neurological conditions)

Secondary Content Focus: Other (Caregiving, Pediatric Rehabilitation)

Providing care to a loved one with a neurological disability can present many challenges as well as rewards. This instructional course will explore issues related to family caregiving of people with various neurological conditions including SCI, TBI and stroke. An international panel will describe findings from both adult and pediatric studies of family caregiving in the United States, Canada, the Netherlands and Latin America.

LEARNING OBJECTIVES

Understand the positive and negative aspects of family caregiving to a loved one with a neurological disability
Identify similarities and differences in caregiver distress and benefit for individuals with spinal cord injury, traumatic brain injury, stroke and other neurological conditions
List (for each diagnosis) a key factor contributing to caregiver stress and anxiety for SCI, TBI, stroke and other neurological conditions

KEY WORDS

Caregivers
Spinal Cord Injuries
Brain Injuries
Stroke
Nervous System Diseases

FACULTY

Susan Charlifue, PhD, FISCoS, FACRM
Senior Principal Investigator, Craig Hospital

Dr. Charlifue started her career at Craig Hospital in 1976, and completed her doctorate in Health and Behavioral Science at the University of Colorado, Denver in 2004. She is Co-Principal Investigator SCI Model System at Craig Hospital in addition to coordinating several SCI research clinical trials. She is the Principal Investigator for NIDILRR, Neilsen Foundation and Department of Defense SCI grants. Since 1990 she has managed and completed seven major investigations of aging with SCI in the US and Great Britain. Dr. Charlifue serves on the Executive Committee of the International SCI Data Sets. She is Chair of the Program Committee of the International Spinal Cord Society (ISCoS) and a member of the Editorial Committee of ISCoS. She is also a member of the Board of Directors of the American Spinal Injury Association. She is the immediate Past Chair of the ACRM SCI-ISIG and is involved with the International Networking Group and Program Committee of ACRM. Dr. Charlifue serves on the editorial board for the journal, Spinal Cord.

Erin Kelly, PhD
Senior Research Associate, American Academy of Pediatrics

Dr. Kelly earned her PhD in Psychology, with a Concentration in Community and Prevention Research, from the University of Illinois in Chicago in 2005. She has been conducting research in spinal cord injury rehabilitation since 2000 and has been conducting research with youth and families at Shriners Hospitals for Children since 2007. Her work at Shriners has involved examining the psychosocial adjustment of youth with SCI and their caregivers, including intervention research to foster caregiver health and well-being. While Dr. Kelly continues her work at Shriners as a member of their Scientific Staff, in Fall 2015 Dr. Kelly moved to the American Academy of Pediatrics where she is currently a Senior Research Associate. As part of the current instructional course proposal she will be discussing descriptive and intervention data she collected related to the health and well-being of caregivers of youth with SCI.

Marcel Post, PhD
Special Professor in Spinal Cord Injury Rehabilitation, Rehabilitation Centre De Hoogstraat; University Medical Centre Utrecht; University Medical Center Groningen

Marcel Post studied psychology and graduated in 1985. His doctoral work at the Julius Center, Utrecht University focused on health status and life satisfaction after spinal cord injury (Dissertation 1997). Since 2005 he has a joint appointment as associate professor at the Department of Rehabilitation medicine, Nursing Sciences and Sports of the University Medical Center Utrecht and as senior researcher and leader of the spinal cord injury research program at De Hoogstraat Rehabilitation. In 2014 Marcel has been appointed special professor of spinal cord injury rehabilitation at the University of Groningen. He is also working as senior scientific advisor for Swiss Paraplegic Research in Nottwil, Switzerland since 2011.
Marcel Post’s current research interests include the study of rehabilitation care, quality of life, psychological factors, self-management, and family empowerment in persons with stroke or spinal cord injury. In his research he has focused on participation, quality of life, rehabilitation outcome measurement, and instrument development in these areas. Dr. Post is author or co-author of more than 230 articles in peer-reviewed journals. He is member of the Scientific Committee of the International Spinal Cord Society and member of the Executive Committee of the International Spinal Cord Injury Data Sets project in which he co-chaired the development of the datasets for activities and participation, and quality of life. He is Section Editor of Spinal Cord and of the Archives of Physical Medicine and Rehabilitation. He is also member of the Editorial Board of Topics in Spinal Cord Injury Rehabilitation.

Lillian Stevens, PhD
Research Psychologist, Project Director and Database Manager, McGuire VA Medical Center

Dr. Stevens is a Research Psychologist at the McGuire Veterans Affairs Medical Center (VAMC) in Richmond, Virginia. She obtained her PhD in Clinical Psychology from Virginia Commonwealth University (VCU) and then went on to complete a NIDRR-funded Advanced Rehabilitation Research Training postdoctoral fellowship through VCU’s Department of Physical Medicine and Rehabilitation. She also completed an advanced postdoctoral psychology fellowship in Mental Illness Research and Treatment at the McGuire VAMC. Currently, she serves as a Site-Principal Investigator and database manager for the Veterans Affairs Traumatic Brain Injury Model Systems. Dr. Stevens’ research interests include family adjustment to TBI in both military and civilian families and she has published numerous peer-reviewed articles on topics related to TBI rehabilitation and family adjustment among culturally diverse populations. Clinically, her current work focuses on Veterans with TBI and Posttraumatic Stress Disorder, including efforts to improve family functioning, parenting skills, and post-deployment mental health.

Susan Jaglal, PhD
Professor, University of Toronto

Dr. Jaglal is the Vice-Chair Research and Professor in the Department of Physical Therapy at the University of Toronto with cross-appointments to the Rehabilitation Sciences Institute and the Institute of Health Policy, Management & Evaluation. She holds the Toronto Rehabilitation Institute-University Health Network Chair. She is a leading researcher of rehabilitation health service utilization, appropriateness, and effectiveness, particularly for osteoporosis and hip fractures and for rare neurological diseases. She is leading national efforts to develop a self‐management program for persons with spinal cord injury and a quality of care indicator framework.