About the Project
Welcome! This website has been created to help people with spinal cord injuries stay healthy while enjoying the activities that are meaningful to them. It is also helpful to the friends, family members, partners and caregivers of people with spinal cord injuries. The information collected here can provide a starting point for reviewing current health care routines, or for making a new plan to help avoid the danger of pressure ulcers (which is the medical term for pressure sores or bedsores). It is also meant to provide interesting new information to people with spinal cord injuries, their loved ones, and the people who assist them with their daily lives.
The USC/Rancho Pressure Ulcer Prevention Project involved a team of researchers from the Division of Occupational Science and Occupational Therapy at the University of Southern California in Los Angeles, and from the Rancho Los Amigos National Rehabilitation Center (RLANRC) in Downey, California. Together, this group of professors, occupational therapists and physicians studied the daily lives of people with spinal cord injuries, focusing on the issue of how this diverse group of people prevented - or developed, and then dealt with - pressure ulcers. The research group looked for answers to questions about the knowledge that people with spinal cord injuries typically have about pressure ulcers; what everyday habits and activities prevented or helped cause pressure ulcers; how motivation and attitude affected a person's self-care practices; and, very importantly, how people dealt with "daily dilemmas" created when some forms of participation in activities put them at a higher risk for getting a pressure ulcer.
Why is it important to prevent pressure ulcers?
It might be hard for you to accept just how serious pressure ulcers can be. When the actor-director-activist Christopher Reeve died due to complications of a pressure ulcer, a lot of people realized for the first time just how dangerous pressure ulcers are. A pressure ulcer can require staying in bed to keep pressure off of it until it heals; if you catch a pressure ulcer early, just staying in bed a few days might be enough to let your body recover. A pressure ulcer that is not taken care of by you and your doctor can become infected all the way through the muscle and down to the bone. The infection can go throughout your system, making you very sick; you might need to take antibiotics as pills or through an IV drip, whichever your doctor thinks is best. A deep pressure ulcer can require surgery to repair.
Obviously, a pressure ulcer, and the other problems it can cause, is something to avoid. They can be difficult to cure once they develop. The best way to deal with this danger is to avoid getting a pressure ulcer in the first place. There are many good ways to prevent pressure ulcers. The articles on this website, combined with information from your doctor or therapist about self-care, can help you prevent pressure ulcers. If you are already doing some practices every day to prevent pressure ulcers, such as pressure reliefs and checking your skin for "red spots" (early stage pressure ulcers that are more easy to heal), that's great! This website might give you ideas about how to make your current program even better.
How people with spinal cord injuries took part in this study
The USC/RLANRC group worked with a group of 20 people - 19 with spinal cord injuries, and one with transverse myelitis (an illness which results in impaired sensation and mobility, similar to a spinal cord injury) - who agreed to take part in this research project. The men and women who participated in the study came from different parts of the world; they had different levels of income; they were different religions and different ethnicities; they had different levels of education; they had different levels of injury and different lengths of time since they were injured. The only things they had in common were that they had received a spinal cord injury at least one year before they joined the study, and that in the past they had each had treatment for at least one serious (that is, Stage 3 or Stage 4) pressure ulcer.
The researchers interviewed the participants in a variety of places - their homes, their work, the places they liked to go, even the hospital if a participant required surgery for a pressure ulcer. They got to know more about how these study participants went about their daily lives, and what their opinions were about pressure ulcers, doing prevention techniques like performing pressure reliefs or checking their skin for "red spots," and other health-related issues. The participants invited us into their lives, telling us what happened when they had gotten pressure ulcers in the past, how they were doing now, and what hopes (or fears) they had for the future.
After listening to the life stories of these study participants, the researchers went through a process of reviewing what the participants said. The researchers found many interesting events and common experiences that the participants talked about, involving their health, their families and their daily lives. The researchers started choosing themes or topics that the participants said were very important to them, and topics that affected the participants' health in significant ways. In the end, the research team found 46 topics that had been raised by the participants as having important effects on their health, either for the better or for the worse.
The information about the study participants on this website is illustrated with sketches of the participants. To protect the participants' privacy, the researchers asked an artist, Rudy Marticorena, to draw portraits based on the facts about the participants. Rudy never met the participants or saw pictures of them. His portraits give you an idea or impression of the participants, so you can keep in mind that these are real stories about real people. The names of the participants have also been changed, as well as other information that might take away their privacy, such as the names of the cities they live in, the names of companies they work for, or the names of family and friends.
How the articles on this website were written
Once the researchers identified these topics, they started gathering information. Some of the information came from the participants themselves. Their stories related to these topics, and quotes of what the participants said, are included in articles about these important topics.
Some of the information given in the articles on this website came from research studies done by other investigators - doctors, scientists, nurses, occupational therapists, physical therapists and others who had studied the health of people with spinal cord injuries and other disabilities. These studies were published in scientific and medical magazines. Such publications are called peer-reviewed journals, meaning that the technical, scientific or medical information in the articles has been verified and accepted by other experts in the same profession. These publications are also sometimes called scholarly or academic, since the information has been verified by experts and can be used in research or in teaching future health care professionals.
One other source was used to provide information for the articles on this website. Current newspapers or magazines that had articles about these topics were sometimes used to provide up-to-the-minute updates of information, or to give examples of other people who had similar experiences to the participants in this study.
How long ago were you injured?
This website can be used by people who have been living with a spinal cord injury for years, and by people who were more recently injured. The person who has gotten to know their own body and its abilities and challenges has probably become used to a schedule of self-care practices. They choose activities for the day or the week, and take part in these activities in a way they are accustomed to doing them. Changing established habits is not easy, but there are times when it is necessary, such as when old methods of preventing pressure ulcers are no longer working.
If you only recently sustained a spinal cord injury, you are probably experiencing a lot of uncomfortable feelings - confusion, anger, sadness, fear. Many people also feel gratitude that, although they have been hurt badly, they are indeed alive. You don't "have to" feel any of these emotions. How you react is a very private thing. For most people, though, it can feel overwhelming to learn that they have a spinal cord injury. It takes time to adjust to this idea, emotionally. It takes time to change how you think about yourself. Most of all, it takes time to learn new ways to do your daily activities, whether that means taking care of yourself, having fun, hanging out with family or friends, or even working at a job. Part of what you have to learn is how to prevent pressure ulcers. This website can help you form ideas about pressure ulcers and what you will do to avoid getting one. The real-life stories of the people with spinal cord injuries who participated in this project can teach or even inspire you about getting the most out of life, and keeping yourself healthy.
Care attendants, friends, family and partners
This website is not just for people with spinal cord injuries. Many people are involved in helping people with spinal cord injuries in their daily lives; even more people know someone with a spinal cord injury, whether it is a friend, family member, or partner. The use of care attendants among all people with disabilities is growing. In fact, 23% of Americans today reported that they give care to someone, whether it is a partner, a friend, a family member, or a person who has hired them to be a caregiver. This information contained on this website, as well as the stories of the study participants, can be of great interest to care attendants, friends, family and partners of people with spinal cord injuries.
There are a number of topics covered on this website. Some of them have very interesting facts about exactly what pressure ulcers are and what causes them. Each topic is discussed in two separate articles. An introductory article covers the basics, and is split into smaller sections. Another article goes into more detail, and includes more medical language and references.
For more information about what a pressure ulcer is, check the introductory article called "Different Kinds of Pressure Ulcers". You can find more detail in the article called "Stages of Pressure Ulcers."
For more information on how pressure ulcers form, check the introductory articles called "Injury and Rubbing" and "Pressure and Sliding". You can find more detail in the articles called "Injury and Friction" and "Pressure and Shearing."
For more information on daily practices to avoid pressure ulcers (like pressure reliefs and skin checks), check the introductory article called "Things to Do to Take Care of Your Skin". You can find more detail in the article called "Prevention Techniques."