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For just about everyone who has received a spinal cord injury, some kind of education about pressure ulcers (which means the same thing as "pressure sores" or "bedsores") and pressure ulcer prevention is an early step in the process of getting adjusted to their new way of life. Usually this takes place during the initial stay in the hospital, or while working with occupational therapists and physical therapists during a period of rehabilitation training. In many cases, a video or slide show is included as part of pressure ulcer education; one of our participants, Chris, remembered that "they show you videos [at the rehabilitation facility] before you leave. 'This is what a pressure ulcer can do. This is how you get it....' They show you a quick film before you go."
However, for many people, getting all that information can feel a little overwhelming, or like it doesn't relate to them 1. Even if someone does manage to absorb the facts offered that way, they may not take it seriously. They might feel confident that if they saw redness, it would go away pretty quickly, or that there would be a long time before it grew from "nothing to write home about" (as Rachel described ulcers she discovered on her feet) into anything dangerous. These feelings are really quite common. Studies show that there is a relationship between how serious a person thinks pressure ulcers are and how carefully they stick to prevention practices; between how effective they think prevention practices are and how carefully they stick to prevention practices; and between whether they think they are vulnerable to pressure ulcers and whether they've ever had one before 2. In other words, people don't seem to realize how serious pressure ulcers are until they actually get one or more; the most powerful teacher seems to be personal experience! Many of our study participants, including Alley, Brenda, Chris, and Helen, would probably agree with that point of view.
A good way to grasp the reality of pressure ulcers is to take time to educate yourself. This is more than just listening passively while a video is played in the hospital; this is searching for information that is meaningful to you, that answers your questions. Using a computer might be helpful. Studies show that 7 out of 10 people with spinal cord injuries have access to the Internet, and that a whopping 85.7% feel very comfortable using computers and the Internet 3.
If you are interested in getting a booklet to educate yourself that is in the same style you might see in a hospital or rehabilitation facility, an excellent resource is Pressure Ulcers: What You Should Know, created by the Consortium for Spinal Cord Medicine, which is supported financially by the Paralyzed Veterans of America (PVA). This 45-page guide is easy to read and to use. You can also download a free copy in PDF format. Úlceras por Decúbito: Lo Que Usted Debe Saber Una Guía para Personas con Lesiones Medulares ha sido producida en Español de parte del PVA por el Consorcio de Medicina de la Médula Espinal. Usted puede llamar a 1-888-860-7244.
You can also download a "Spinal Cord Injury Manual" at no cost. The manual was prepared for consumers by the Regional Spinal Cord Injury Center of the Delaware Valley, which is part of Thomas Jefferson University Hospital in Philadelphia, PA. Also, try Prevention of Pressure Sores through Skin Care, which was created by the Spinal Cord Injury Model System, maintained by the University of Alabama at Birmingham.
Another website that has a great deal of online information about pressure ulcers, along with illustrations and links to more Internet sites, is the ad-free website maintained by the University Health Care System in Augusta, Georgia. The information on that website is used by Healthwise, which also supplies information to WebMD (a website, run by the publicly-traded company WebMD Corporation, that displays ads along with health facts). A web page that is a bit similar to the University Health Care System page is Prevention of Pressure Sores through Skin Care, on the Spinal Cord Injury Model System, which is maintained by the University of Alabama at Birmingham, and has pressure ulcer prevention guidelines as well as links to other sites and to publications about self-care. If you wish, it might be helpful to compare them and see if you like one more than the other.
Two other excellent sources for self-education using the Internet are a page of Educational Brochures, maintained by Craig Hospital in Denver, Colorado, that has links to several online brochures they have written about a large range of topics pertaining to living with a spinal cord injury; and Staying Healthy after a Spinal Cord Injury, a page on the website of the Northwest Regional Spinal Cord Injury System, maintained by the University of Washington, which also makes available a number of online pamphlets.
There are also many health professionals whom you already know who might be able to provide you with the information you want to know. Contact your doctor, a home health care nurse, an occupational therapist, a physical therapist, other rehabilitation professionals or your care attendant with any specific questions you have. If your interest is more general, they might be able to recommend a class, or give you instruction themselves that is geared to your lifestyle, your preferences, your needs.
Once you have educated yourself, why not share what you have learned with your partner, friends and family, or your co-workers? They may not know very much about spinal cord injury, or might have thought it would be uncomfortable or rude to ask questions. And research has shown that even one meeting or talk (about 1-hour long) to an individual or a group about disabilities can be enough to increase their knowledge and improve their attitudes toward people with disabilities 4.
Pressure ulcers are too dangerous to take an attitude of "let's see how it goes," or "it won't happen to me." Whatever it takes to convince yourself of just how serious they are, and that they can happen to you, without putting yourself through the pain, expense and long recuperation time of actually getting a pressure ulcer, is worthwhile. And whatever you can do to learn about the prevention methods that would best fit your lifestyle is also worthwhile. A study has shown that when you are educated (or educate yourself) about pressure ulcer prevention in a way that is customized to your needs and your learning style, you remember the information much longer and take it much more seriously 5. It's hopeful that learning about the real-life stories of the participants in our study might do the trick. They chose to reveal their personal experiences to help other people with spinal cord injuries avoid suffering from pressure ulcers. Take advantage of the education they are sharing with you!