We Were Asked to Share Our Voices - Now We Must Respond
By Amy Acton, RN, BSN
Several years ago the Phoenix Society was asked to assemble a panel to share the survivor’s perspective on which issues should be considered as priorities in burn research over the next 10 years. The panel was to participate in a meeting attended by the top researchers and care providers in the burn community.
My initial reaction was to wonder what I, or my fellow panelists, could add to this meeting. As a survivor and nurse I had spent my career at the bedside and in the community assisting burn survivors, not conducting research.
An Important Opportunity
However, as I thought about this opportunity, it became clear to me that this was a very important chance for the survivor community to share our collective experience about long-term recovery issues. I knew that much of the research on psychosocial recovery had focused primarily on the first 2 years following a burn injury and had identified issues that we at the Phoenix Society had been addressing as an organization. We understood that programs were available to help emotional recovery, however, our decades of experience at the Phoenix Society also told us that those initial 2 years after an injury were just the beginning of recovery for many. So in response to this request, we reached out to a number of survivors and their families to provide us with the insight we needed to focus our input for this meeting.
Phoenix Society members Chris Gilyard and Erin Mounsey joined me on the panel. We were scheduled to speak as the final presenters on the conference agenda. To say we were all a bit intimidated is an understatement, but we were also honored to be asked our opinions. We commended the research community for the valuable work already done, and we also highlighted the issues we felt deserved further research so that burn survivors could return to the fullest life possible.
Two Compelling Stories
The stories shared by Erin and Chris were especially poignant because, although they were burned more than 20 years apart, they recounted very similar challenges in their transition back to life. They described the specific interventions that had helped them to begin to address the challenges they faced, but stressed that these still were not a standard of care. They both found that peer support, as well as tools and programs to help with social reintegration, dealing with a changed body image, and the impact of trauma on families, were not fully embraced by care providers or readily accessible to those in need.
It was a powerful moment to hear about their real-life struggles and what had made the road less difficult. Their stories made it clear that there was much work to be done to work together as a burn community to solve these issues.
Our message stressed that there was a need to build upon the current research that indicated difficulties in social reintegration, and to work together to evaluate available programs, develop new interventions, and establish a sustainable way for survivors to access these resources.
A New Formal Role
This session inspired then-president of the American Burn Association, Dr. David Greenhalgh, to call for the formation of an ongoing formal committee with representatives from the ABA and the Phoenix Society that would ensure that survivors are influencing the identification of priorities in burn care research and participating as part of the team addressing them.
Personally, I have never felt more empowered as a survivor or as a front-line care provider implementing programs that support recovery then at that meeting. It was a key moment for the survivor community and for the Phoenix Society. As part of the leadership team of the only national burn survivor-based organization, it was a call to action to be further engaged in areas we had not been previously—research and advocacy for quality of care. Traditionally, we had focused on providing support and interventions that were reportedly helpful to our members, such as peer support, social re-entry interventions, and education of care providers. Over the years we were often asked to write letters supporting research projects, but we had not been involved in forming research projects that could ultimately lead to sustainable interventions and programs or validating those we were already providing.
The joint committee that Dr. Greenhalgh advocated for soon became a reality. Since then the Aftercare Reintegration Committee (ARC) has helped identify additional areas of needed research, emphasizing the evaluation of current model interventions, the development of new interventions and the education of burn care providers regarding the long-term needs of patients and families as priorities. By bringing together the researchers, care providers, and our organization, which delivers national programs, we have had the opportunity to not only understand the challenges in burn recovery but truly address them with interventions/programs that will promote the best outcomes for those with burn injuries.
Partners in Research
Fast forward 7 years—we are no longer just writing letters of support for research but have become partners in the work being done. We have participated in the National Institute on Disability and Rehabilitation Research meeting in Washington, DC, for several years to share our current programs and ideas of how the model systems research could further support interventions that we believe have a positive impact on psychosocial recovery. We are actively engaged in several of the model systems research projects, sharing valuable perspectives during the formation of projects, collaborating to evaluate current interventions we are offering, and engaging our membership to evaluate new interventions that we hope to offer through our growing network. By expanding our participation and partnership with the burn research community, we will all have a greater impact on helping families and burn survivors get back to living after a burn injury.
The Value of Your Voice
Phoenix Society member involvement is crucial to this work. The size of our membership enables us to address one of the greatest challenges within burn care research—obtaining the number of subjects needed to conduct valid research. The Phoenix Society clearly has a network of burn care providers, survivors, and family members with a breadth of experience and passion for this work that is unparalleled. We are currently working with our partners on several research projects that will benefit from your involvement. We will be actively seeking participants in several evaluations and studies over the next year. We ask that when you receive an invitation to take part, you consider the value of your voice, feel the empowerment, and understand the impact you may have on the future of burn care if you choose to participate. We may not be researchers, but we live with a burn injury every day. We hold the keys to what will help us live the fullest life possible.
Our voices will add tremendous value to focused research on long-term recovery—I understand that now.
Please visit the Phoenix Society website (http://www.phoenix-society.org) to learn more about how you may be able to help us with research and program evaluations. Help us achieve our goal of improving the quality of care.
Evaluation of the UBelong Program for Children Impacted by a Burn Injury
University of Kentucky College of Social Work
Goals: To evaluate the success of the UBelong program from the perspective of the children and teen participants in impacting areas such as self-perception, self-esteem, social comfort, and feelings of fitting in with others. To gather information from the participants about what works well in the program and how the program could be improved or finely tuned to best achieve its outcomes.
Evaluation of Journey Back – School Re-entry Online Resource Delivery
Goal: To collaborate with evaluation partners to learn the effectiveness of the program materials and the new online program delivery format.
Evaluation of a Web-based Social Skills Training (SST) Program for Survivors of Burn Injury
Department of Physical Medicine & Rehabilitation, UT Southwestern Medical Center
Goals: To examine benefits of a Social Skills Training program in reducing social anxiety and improving community participation.To assist burn survivors who experience difficulty in psychological and social adjustment.
Take Charge of Burn Recovery - Pain Management Study
Johns Hopkins University, Johns Hopkins Burn Center
Goal: To develop and test a new online program to help burn survivors manage their pain. Take Charge of Burn Recovery - Pain is a computer-based, online program that gives information and tips on how to manage pain following a burn injury.
Measurement of Community Participation Using a Computer Adaptive Test in Adult Patients with Burns
Boston University School of Public Health/Massachusetts General Hospital/Spaulding Rehabilitation Hospital/Phoenix Society
Goal: To develop a consumer-based tool that assesses community re-integration following a burn injury. With the new instrument, our goal is for clinicians and consumers to be able to track the functional recovery of burn survivors in terms of their social integration in the community, their short- and long-term status, and to apply the measurement tool to new rehabilitation interventions in future research studies.
This story is an excerpt from The Phoenix Society’s® Burn Support Magazine, Issue 1, 2014. Burn Support Magazine is a quarterly publication that contains articles on the emotional, psychological, and social aspects of burn recovery. All Rights Reserved.