The Burn Survivor Perspective.

The burn survivor’s perspective is critical in helping focus the priorities for burn research during the next 10 years. The goal of medical science it to improve outcomes and the lives of those we serve. As individuals who have experienced a burn injury, burn survivors can provide an important and unique perspective. There have been numerous advances in burn care and, as was discussed in the first 2 days of this State of the Science conference, yet there is a lot of work yet to be done. Each of us survivors has tremendous respect and gratitude toward the burn team, and the following comments are made with the goal of improving care for current and future burn survivors. Real progress can happen if we work together to develop the goals, knowledge base, and then ultimately implement the available and proven interventions as a standard of care. The purpose of the burn survivor panel discussion was to provide a personal perspective of the priorities in burn care research. The collective burn survivor community is a wealth of information—if we listen. Both Erin Mounsey and Chris Gilyard are burn survivors with a point of view that will help demonstrate some common themes we hear across the country at the Phoenix Society for Burn Survivors. They are two individuals burned some 20 plus years apart and both believe that psychosocial rehabilitation of patients should be the priority in patient care and thus the priority for research. The first thing I must tell you is that I am not a researcher, but I do value the importance of a scientific approach to the care we provide. I will share my perspective from several vantage points to demonstrate some of the themes that are common for many people that I speak to regarding burn recovery. First, as someone who has been in the bed as a patient receiving burn care, I learned that the burn team helps to lay a strong foundation for the healing necessary both physically and emotionally. Not only were compassionate care givers key to the progress physically, but they helped to create a safe place for emotional healing to start. I only wish I could have taken the burn team with me out into the world as I transitioned back into my community and my peer group. It is there that I stumbled and lacked the necessary information, tools (to manage stares and questions) and support. The psychosocial reentry was the most difficult part of my personal recovery. I also spent 7 years at the bedside as a burn nurse working to meet the needs of patients and families. At times I felt very inadequate as patients and families asked the tough questions about their future and how to handle the reality of their disfigurement. The easy part for me was providing the “physical care.” I did not receive specific training during my orientation, nor was I prepared for the psychosocial issues that the burn patient and family may experience. As a caregiver I lacked the tools to support this part of recovery beyond what I learned in my nursing program. Because I had “been there,” I was able to offer some hope and examples of how I handled life after a burn injury though it was just one perspective. It was interesting to me that the patient and family would receive this information from me in a different way (than from other staff members). It was my first experience of the power of peer support. One of the most dynamic educational experiences for me as a new nurse was attending World Burn Congress. I learned there is not one way to do this thing called “burn recovery” and that many types of resources are needed at different times in the recovery process. I realized that my own personal biases of what was needed for successful burn recovery could get in the way of what I provided for the patients I cared for. An example of this was the belief that corrective cosmetics were just a way to hide and not deal with the reality of the burn. That was my perspective. After attending World Burn Congress, I met Barbara Kammerer Quayle and many others who shared that for them it was a necessary tool to take that first step–it was a tool to help them gain confidence to get From the *The Phoenix Society for Burn Survivors, Grand Rapids, Michigan; †Burn Survivor, Denver, Colorado; and ‡Regions Hospital Burn Center, St. Paul, Minnesota. Address correspondence to Amy Acton, Copyright © 2007 by the American Burn Association. 1559-047X/2007