Ms. O’Hare is Community Programs Coordinator, TBI/SCI Projects, and Dr. Hall is Projects Co-Director and Director of Rehabilitation Research, at Santa Clara Valley Medical Center, San Jose, CA.
"It was just a leisurely day…," "Didn’t have a care in the world…," "I was a passenger…," "I didn’t know what 55 meant…," "Dove into the water…," "That was it, first and last time…"—Words spoken by survivors of spinal cord injury as they try to describe the incident that changed their lives forever. These young adults are trying to make an impression through their candid conversations in the film, "Harm’s Way," sponsored by the American Academy of Neurological Surgeons and Congress of Neurosurgeons. Their message? "Think First!" "Don’t take foolish risks!" "Prevent the injury from happening!"
Injuries in general are beginning to get the recognition they deserve as serious health problems. Healthy People 20001, published in 1990, sets goals and priorities for health promotion, health protection, and preventive services. This comprehensive report states, "Spinal cord injuries are catastrophic health events resulting in enormous human and economic costs." The State of California, in recognizing the work done in the report, Recommendations for Research on Spinal Cord Injury in California, has continued the effort at reducing spinal cord injuries (SCI) by making specific recommendations.2,3
Healthy People estimates of SCI in the United States range from 2.8 to 5 per 100,000 people. In California, there may be as many as 35,000 people with SCI, with about 1,000 new injuries occurring each year.2 Estimated lifetime costs for medical treatment and rehabilitation of SCI can be as much as $750,000 per individual. The economic costs are staggering. Depending on the method used to measure costs, estimates are approaching $200 billion per year.3
The spinal cord is an extension of the brain, and sends electrical impulses to and from the brain.
The brain controls movement, sensation and bodily functions. A spinal cord injury (SCI) is paralysis, to a greater or lesser extent, as a result of damage to the spinal cord. The cord is protected by 33 vertebrae. The vertebrae are generally grouped into four sections: cervical, thoracic, lumbar, and sacral (illustration). Depending on the level of injury, the paralysis is described as tetraplegia (or quadriplegia), referring to all four extremities affected, and paraplegia, referring to paralysis from approximately the waist down. There is no known cure for an SCI, and the results of the injury are considered permanent.
SCI can occur in a number of ways, but we will focus on traumatic injuries, that is, those injuries caused by an external force. The population most at risk for SCI are young males, 15 to 25 years of age. The most frequent cause of injury is motor vehicle crashes (including motorcycle), followed by falls and sports. A most alarming trend, however, is the increased incidence of injury because of violence/violent behavior.
The multiple consequences of SCI–including permanence of injury, risk to our youth, and economic impact–demand that we use every means at our disposal to prevent the injury from occurring.
Types of Prevention
There are several ways to categorize prevention efforts: primary, secondary, and tertiary prevention.
Primary prevention seeks to "reduce susceptibility, eliminating or minimizing behaviors and environmental factors that increase the risk of injury."3 Environmental, legislative, and educational activities are examples of primary prevention.
Secondary prevention is the effort aimed at reducing or halting the progression of the disabling condition after the initial injury has occurred (i.e., specialized emergency medical services for those who sustain an SCI).
Tertiary prevention refers to preventing or limiting conditions associated with the SCI such as decubitus ulcers (pressure sores), and contractions. Secondary and tertiary levels of prevention work in concert to prevent the disabling condition from becoming a handicap.
A number of agencies, institutions, and organizations have worked to form strategic plans to address injury prevention. The three broad approaches for injury prevention programs are:
The rehabilitation professional is most often able to influence the reduction of injuries through education. In order to make a significant change in an individual’s behaviors, he/she must first be aware of the problem. Santa Clara Valley Medical Center (SCVMC), together with the Traumatic Brain Injury (TBI) and SCI Model Systems (programs funded by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education) support an educational program to middle and high school students. The Safety Education Program at SCVMC has reached more than 82,500 people, including those in several special programs supported specifically by law enforcement agencies in Santa Clara County.
All of the following programs described can be easily replicated in any community and can be modified to address the community’s needs. Most importantly, they provide a unique forum for members of the community to become aware of the consequences of high risk behaviors.
Disability Awareness and Injury Prevention Presentation
The school presentation, commonly known as THINK FIRST,5 is a national program with over 200 chapters in 47 states sponsored by the American Association of Neurological Surgeons (AANS) and Congress of Neurological Surgeons (CNS). Directed at middle and high school students, this presentation seeks to reduce the incidence of injury.
The presentation, which can be given in either classroom or assembly format, includes a rehabilitation professional describing brain and spinal cord injury, an action-filled video4 featuring direct testimony from teenagers, and a person who has survived a brain or spinal cord injury discussing his or her injury in terms of financial, physical, and emotional consequences. Finally, strategies for preventing these injuries are discussed. The audience has an opportunity to ask questions throughout the presentation and, time permitting, students are asked for feedback. Typical responses indicate the students understand that injuries could happen to them and that they intend to modify their behavior (i.e., wear safety belts, measure the depth of the water, refrain from drinking while driving).
The rehabilitation professional uses anatomical models to illustrate the various types of injury and their consequences, which are described in terms of loss of physical, cognitive, or social function. The featured video–either "On the Edge" or "Harm’s Way,"–is designed to catch the audience’s attention and does so through young actors describing typical activities to which the audience can relate. A speaker, who has a spinal cord injury, then narrates his/her personal story. This is a very poignant part of the presentation, as the survivor, speaking from the heart, shares a most personal account of the changes in his/her lifestyle. For many in the audience, this is their first opportunity to meet with someone who has a disability and to question him/her openly.
The Juvenile Traffic Safety Diversion class is presented by the City of Sunnyvale, California, Public Safety Division. Sunnyvale, a city in the heart of Silicon Valley with a population of approximately 126,000, is unique in that the police and fire departments are combined. The city offers first-time offenders under the age of 18 an opportunity to attend an education class in lieu of paying a fine for a bicycle, skateboard, or pedestrian violation. A parent is required to attend also. The primary goal of this program–which is similar to THINK FIRST but modified to emphasize bicycle and pedestrian safety–is to teach juvenile traffic offenders their rights and responsibilities. It is given one or two times per month in a classroom format.
The Juvenile Probation and the Adult Daily Reporting Programs. Juveniles who have been convicted of substance abuse violations are required to attend our presentation as a condition of probation. They are joined with the inmates from the Adult Daily Reporting Program. Adult Daily Reporting is a 6-week alternative sentencing program which addresses lifestyle, decision-making, self-esteem, and work skill issues with selected inmates of the county jail. The presentation is modified to address issues such as substance abuse, violence, and violent behaviors, with the intended goal of reducing the incidence of SCI among young adults. A tour of the rehabilitation facility is included.
Safe Alternatives & Violence Education. (S.A.V.E.) This presentation is offered by the City of San Jose to students who have possessed weapons on or near a school campus. The educational curriculum is designed to offer information and alternatives to students and the material is presented in a large group format (parents are required to attend) followed by small group focus sessions to process the information. This is a particularly exciting program in that it is designed for the less sophisticated offender and has specific reinforcement activities. Those who remain violation free for 6 months are invited back for a "reunion." Food, guest speakers, and positive reinforcement activities are offered. Santa Clara Valley Medical Center and the Model Systems provide guest speakers at the reunion and audiovisual materials for the S.A.V.E. Program.
Do these types of programs really work? It is extremely difficult at this stage to present accurate data that conclusively show how successful these programs are. However, several studies6,7 indicate children have learned they are at high risk–"It can happen to me."
Student/parent/instructor feedback forms indicate an intent to change behaviors that increase the risk of injury: "I’ll wear my seat belt 100 percent of the time," and "I thought wearing a bike helmet was stupid…now I see that it could save my life."
Evaluation of some of the presentations included a pre and post survey to selected classes and an instructor evaluation form, reported elsewhere.6 Recently reported was a testimonial from a family in New York whose children found guns on a trail near their home.8 They had just received a presentation about gun safety, and instead of picking the guns up, they ran for an adult. The sheriff who responded to the call found a rifle and pellet gun, both loaded.
Another indication that the program is successful is the number of requests for "repeat performances." Each year, instructors are sent a letter describing our program, along with a "Request for Presentation" form.
Additionally, officers from the Sunnyvale Juvenile Traffic Diversion Program and the officers in San Jose and Santa Clara County all report a reduction in violations that they attribute to the program.
The THINK FIRST prevention program format was originally designed to increase knowledge and alter behaviors. It is, however, difficult to assess the impact of any one prevention effort on the acquisition of knowledge and the incidence of targeted behaviors, let alone the impact on actual event nonoccurrence (i.e., the prevention of even one injury). An evaluation of our program6 was able to demonstrate an increase in the knowledge of high school students (i.e., recognition that TBI and SCI happen most frequently to individuals of high school age and that these injuries usually result from motor vehicle accidents).
On an experiential basis, there appear to be many additional benefits to the Safety Education Programs. The audience is given information not otherwise available in a very supportive environment. The idea that they need to think of the possible consequences of their actions is presented to them in a nonlecture format. They are introduced to and given the chance to question, without embarrassment, an individual with a disability. With this intimate contact, the audience can learn respect for people with disabilities.
Survivors are uniquely able to speak to an audience at a personal level. One speaker says, "These presentations not only help me make sense of what I’m going through, they also help me deal with the losses I’ve experienced." In speaking to a variety of people, survivors can be positive role models for disabled and nondisabled individuals. Survivors can use the experience of presentations to demonstrate their reliability and work skills. On a personal level, the presentations are a real confidence booster.
The community benefits as a whole. If just one spinal cord injury is avoided, the savings estimate is between $110,000 and $240,000 alone.
Because of the very nature of adolescence, preventative education programs are extremely valuable. Teen-agers can perceive themselves as immortal, invincible, and infallible. Barbara Staggers, M.D., M.P.H.,8 describes some of the characteristics of adolescence as follows: The focus of early adolescence (ages 1014) includes concentrating on relationships with peers, preoccupation with development, and exploration of the new-found ability to abstract. During middle adolescence (ages 1317), youth are having major conflicts over independence, and their peer group sets behavior standards. Late (ages 16?) adolescent characteristics may include the ability to accept/reject advice, have a defined role with respect to society as a whole, and solidify body image and gender role. Given this brief description of the turmoil that is part of normal adolescence, it is easy to see why it is so difficult for individuals most at risk to believe that they are indeed at risk.
Scheduling and cost are concerns in any prevention program. We want to reach the largest number of students possible, but schools may not be able to accommodate an assembly, so classroom presentations are the alternatives. Teachers are struggling to fit all the required classes into a limited timeframe, so creative integration of the presentation into existing classes is imperative. Resources, i.e., speakers and staff, are limited. Many programs rely on volunteer staff to help reduce some costs, but more education to funders on the importance of prevention efforts is needed. Keeping in mind that the estimated lifetime costs for medical treatment and rehabilitation of spinal cord injury can be as much as $750,000 per individual, the cost vs. benefits of a prevention program are well worth the investment.
Environmental and legislation campaigns have made a great contribution to reducing the number of spinal cord injuries. We must continue to support these efforts by informing and educating the public about the personal and societal costs of injury. Communities as a whole must agree to support safety education programs. Collaborative efforts between legislators, public healthcare officials, education providers, and consumers will effectively utilize limited resources.
Safety education programs should be ethnically sensitive. Many cultures have specific expectations or taboos in childrearing, and successful programs will address those issues.
While the presentation appears to have a positive impact on the students, "one-shot" programs are clearly insufficient to alter risk-taking behavior that may lead to injury. Injury prevention programs should span the life cycle, with emphasis on early programs. THINK FIRST for Kids5 is one effort to integrate the safety messages with the established curriculum for grades 13.
1. Healthy People 2000, National Health Promotion and Disease Prevention Objectives, Department of Health and Human Services, DHHS Publication No. 9150212.
2. Recommendations for Research on Spinal Cord Injury in California: A Report to the Director of the California Health Services, Task Force on Spinal Cord Injuries. (August, 1992).
3. Strategic Plan for the Prevention of Disabilities in California, 19962000, Recommendations to the Director of California Health Services (in press).
4. World Health Organization. (1980) International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease, Geneva.
5. THINK FIRST Foundation, 22 S. Washington St., Park Ridge, IL 1800THINK 56.
6. Englander, J., Cleary, S., O’Hare, P., Hall, K., & Lehmkuhl, D. (1993). Implementing and evaluating injury prevention programs in the traumatic brain injury model systems of care. Journal of Head Trauma Rehabilitation, 8(2), 101113.
7. Neuwelt, E.A., Coe, M.F., et al. (1989). Oregon head and spinal cord injury prevention program and evaluation. Neurosurgery 24, 453458.
8. THINK FIRST Prevention Pages, 8, 1 (Spring, 1996).
9. Staggers, B. (1992, September 17). National Electronic Injury Seminar sponsored by the California Department of Health Services, The Adolescent Years: Taking A Developmental Approach to High Risk Behavior.