The Burn Survivor Voice and the State of the Science Conference
By Karen Badger, PhD, MSW
Ten years ago in 2006 the American Burn Association (ABA) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) organized the first State of Science (SOS) meeting in Washington, DC. Representatives from the burn community—healthcare practitioners, fire service professionals, researchers, and burn survivors, among others—came together to set priorities for burn research and practice. Phoenix Society brought to the table a broad national perspective and the ability to identify survivor and family advocates who could share their personal experiences, as well as those of the survivors and family members they support through the Phoenix SOAR (Survivors Offering Assistance in Recovery) program. Those advocates who participated in that first meeting voiced their desire for peer support, evaluation of psychosocial interventions, education for healthcare providers on aftercare and resources for burn survivors, and greater access to resources following burn injury.
These needs resonated with others at the meeting and in the burn community. Among the accomplishments since then have been the inclusion of peer support and aftercare in ABA verification standards for burn centers and the formation of the Aftercare Reintegration Committee (ARC), a joint committee of the ABA and the Phoenix Society for Burn Survivors. Championed by Phoenix Society executive Director Amy Acton and David Greenhalgh, MD, Chief of Burns at Shriners Hospital for Children–Northern California, ARC’s focus is on coordinating the efforts of both organizations to set standards of aftercare in the areas of rehabilitation and integration in the community for those affected by burn injury.
In February 2016, the ABA and NIDILRR convened the second SOS Progress in Burn Research Acute and Rehabilitative Care meeting to review progress in the last decade and identify current needs and unanswered questions to inform the burn research agenda and practice priorities related to long-term outcomes. The importance of assuring the survivor voice in these discussions was demonstrated by their insightful input and integration throughout the conference. Presenters reviewed the state of the science on key topics related to acute care, rehabilitation, and reintegration following a burn injury, including the presentation “Recovery: The Burn Survivor Perspective” by Phoenix Society executive director Amy Acton and burn survivor John O’Leary. Topic presentations were followed by discussion break-out sessions with burn survivors present in each break-out. “It was great to hear the perspectives of burn survivors at the State of the Science Meeting,” Dr. Greenhalgh remarked, “No planning for research is really complete without the input of survivors—they are instrumental in deciding the priorities for future burn research.”
Those views were reiterated by the current cochairs of the Aftercare Reintegration Committee (ARC). “The establishment of the joint ARC, and the increased participation of burn survivors in the ABA’s Burn Quality Consensus, Partnership, and Leadership Conferences, and the more recent NIDILRRABA SOS (2016) is evidence that the burn survivor voice is essential in not only setting a burn research agenda but also to significantly change the state of burn aftercare,” concluded Dr. Radha Holavanahalli, one of the ARC’s two chairs. Jill Sproul, her co-chair, added, “I was so pleased to see so many survivors invited to participate in the SOS. As the burn community looks at the long-term outcomes of burn survivors it is so important to have the survivor voice to let us know how we are doing.”
What was the experience like for those burn survivors who contributed their voice to the SOS meeting? Here are some comments from a few of the survivors who participated: Amy Wood, a registered nurse for 30 years prior to her burn injury, attended the SOS meeting as a burn survivor representative. She also stressed the importance of aftercare. One of the challenges she and her husband (a physician) experienced when she was discharged from the hospital was not knowing what support was available. She shared that they struggled with finding follow-up care in their local medical community (she was treated far from her home). On their own they discovered the Phoenix Society for Burn Survivors, which she describes as the “best thing that happened during my recovery.” Her greatest take-away from the SOS meeting was knowing that survivor voices are being heard in the area of longterm follow-up after discharge. “Survivors have so much physical healing when they are discharged that their emotional healing may not begin until months or years after their injury,” she explained. “During the meeting there was talk of the National Burn Registry and my hope is that a listing of survivors and prolonged contact with them would help with so many of the things that become issues long after our skin grafts have healed. Things like community reintegration, return to work, revision surgeries, other types of skin treatments—and most importantly, the emotional recovery that comes with living with scars in a world where so many things are judged on how you look. Peer support in my opinion is of number one importance in recovery,” added Amy, who would have liked to have had that support while she was still in the hospital.
Scott Denman, who was in injured in 1992 in a natural gas explosion at work, said, “I was very grateful to the ABA and NIDILRR for involving burn survivors in the meeting. I felt that our voices were wanted, as well as heard. As a burn survivor it was a great experience to have conversations with medical professionals about burn care.” He was especially impressed with a special breakfast session organized for burn survivors to offer their perspective on optimal long-term recovery. “I thought the break-out session just for the burn survivors had a huge impact. We were able to voice what we felt is needed for burn care,” he remarked. “I have heard from a couple different people that the burn survivor voice was heard and that aftercare is what we feel is needed. I am looking forward to seeing aftercare come to the forefront of burn care.”
Another survivor/advocate attending the meeting was Massachusetts Fire Lieutenant Paul Machado of the Fall River Fire Department, who reported, “I had a great experience and felt welcomed and wanted in a traditionally medical group.” Paul, who was burned in the line of duty in 2013, explained, “From just a simple hello to a direct question of my thoughts on a subject, I felt like I fit right in...by listening to the speakers I was able to gain insight on how dedicated these medical professionals are toward burn care. I think it was apparent during the break-out sessions how valuable it was to have survivors and families there.” He shared his thought that burn injuries don’t follow a treatment checklist as may be the case for other injuries and that “the survivors emphasized that [burns] are lifelong injuries that [are different] for every person and every burn.” He appreciated the research he heard and the data it generated, along with the outreach of the healthcare community who included the perspectives of burn survivors so that they could hear about those survivors’ lived experience.
An Intersection Between Research and Personal Experience
One topic that demonstrated an intersection between research and personal experience was itching, which was specifically addressed in the presentation and break-out session on pain and pruritus. Both Amy and Paul noted this topic as having personal significance. Paul made note of the scale used to measure the severity of itching that burn survivors experience and discovered that a large percentage of burn survivors do experience long-term itching. “Yes, I fit into that percentage!” he remarked.
Amy also described her personal challenges with itching, saying it has been continual and has slowed healing not only on many of her grafted but also her donor sites. “It is a big quality-of-life issue both because of daily aggravation but also because it has caused me to have open areas on my wounds even now, 3½ years later,” she explained.
Impromptu Peer Support
An additional benefit for those burn survivors who contributed to the SOS meeting was the peer support they experienced in the process—a resource mentioned frequently throughout the meeting. Amy shared that getting to know other survivors at the SOS was one of the most powerful things about attending. “The hope that is absorbed from seeing and talking to people who have been through this injury and are making a difference is like being a cracked, dry desert getting a summer rain,” she explained. “It renews me and fills me with new hope.” She and others in attendance voiced their passion for increasing access to peer support for burn survivors and their loved ones.
The Need to Continue the Conversation
Jill, the nurse and burn survivor who is also ARC co-chair, remarked, “I heard over and over the appreciation of the wonderful care from the burn centers. I also heard that there are gaps in the aftercare burn survivors receive. I am very proud of the burn community for having the survivor voice in every session at the SOS. It is no longer enough to save burn patients’ lives—it is also our responsibility to help burn survivors get on with their lives. I am very hopeful that through collaboration with the ABA, the Phoenix Society, local burn foundations, and the burn centers we can work together to improve the lives of burn survivors in the Unites States and around the world.”
Summaries from each speaker and break-out session moderator will be compiled and published in the Journal of Burn Care and Research, allowing meeting outcomes to be shared and to support the continuation of this collective and important work of our burn community in which burn survivors were an important voice.