Article

Understanding Race in the Burn Community

Written by Niki Averton on August 07, 2020

Accessibility
Discrimination
Optimal Burn Care
Intersecting Identities

At Phoenix Society for Burn Survivors, we are dedicated to ensuring every burn survivor has access to quality care and long-term support. Phoenix Advocates contribute to focus groups, speak to medical professionals, and share their experience to improve burn care for all.

As events over the last several years have drawn attention to injustice and inequality, it has become clear that we—all of us, every member of the burn community—need a better understanding of the impact of race and ethnicity on burn recovery.

Note: Throughout this article, you’ll notice language and terminology shifting as we discuss the data we’ve found. We were limited by how reference articles broke down the categories of race and ethnicity. In some cases, articles combined non-Black survivors of color into one “minority” group; in others, all survivors of color were grouped in contrast to white survivors. Because of this, we sometimes couldn’t zero in on the diverse experiences of individual races and ethnicities.

Burn Treatment

Racism in healthcare is a real and impactful problem (1), and burns are no exception.

Despite having less severe burns in terms of size and thickness, and less inhalation injury, Black burn patients still had more complications, required more operations, and had longer hospital stays. (2)

And though over 96% of patients treated in a U.S. burn center survive, Black patients were 37% more likely to die from their injuries. (2)

It’s often hard to identify the impact of other intersecting factors, such as household income, housing status, or insurance status. However, Black survivors and other burn survivors of color repeatedly demonstrate poorer outcomes and more complications during their recovery.

These disparities are likely a result of implicit bias and structural racism.

Implicit bias refers to the automatic and unconscious stereotypes and prejudices that impact our perception. Structural racism refers to the ways racial discrimination is perpetuated through housing, education, employment, media, healthcare, criminal justice, and other systems. (1)

In short, our community must work on an individual and systemic level to understand these disparities and ensure all burn patients get the care they deserve.

Your Story is Powerful

Would you like to help us advocate for quality of care? Consider sharing how race impacted your burn treatment.

Long-Term Recovery

We don’t have a lot of information about long-term physical, emotional, or social recovery after a burn injury. We have even less information about burn survivors of color.

In a study that involved follow-ups at 6 months, 12 months, and 24 months, researchers tracked participation through a range of demographics, including marital status, education, gender, and race.

By the third evaluation at 24 months...

47.1%

of white survivors were still involved

26.2%

of Black survivors were still involved

26.3%

of Hispanic survivors were still involved

The same study notes that those at risk of dropping out of the research project closely resemble the profile of burn survivors who don’t attend follow-up clinic appointments. (3)

Why does this matter?

Compared to burn survivors of color, white burn survivors in the U.S. demonstrate better social reintegration over time (4) and are more likely to return to work after their burn injury (5).

We know long-term studies are more successful in engaging and retaining white survivors. They face fewer barriers to returning for follow-up visits and communicating with their provider throughout their recovery.

“As a care provider, I made assumptions based on my world view as to why patients didn't attend follow-up appointments," says Amy Acton, RN, BSN. Amy, now CEO of Phoenix Society for Burn Survivors, began her career as a nurse and later a nurse manager in a burn unit. “I didn’t at a deep level understand the impact of the systemic racism and barriers that were at play."

When we don’t capture the diverse experiences of the burn community, we start to think there’s just one story. We can’t get the necessary support to those who need it most.

By understanding and eliminating these barriers preventing survivors of color from participating in studies and returning for follow-up visits, we can gather the information to develop resources tailored to their needs.

Burn Surgery Leadership

Minority physicians have been shown to be more likely to work in underserved communities, be sought out by minority patients, and enroll minorities in clinical trials.

Racial and Ethnic Disparities Among Burn Surgery Leadership

Black leaders represent...
1.4%

directors of U.S. burn units

2.0%

past presidents of the American Burn Association

2.0%

editorial board members of major burn journals

Hispanic leaders represent...
2.8%

directors of U.S. burn units

0%

past presidents of the American Burn Association

4.1%

editorial board members of major burn journals

These numbers, which appear in a recent issue of the Journal of Burn Care & Research (6), could be a contributing factor in the gaps we see for non-white burn patients. Increasing diversity in burn surgery leadership – as well as among burn support professionals in the hospital and beyond – will only improve outcomes for survivors of color. 

The American Burn Association is taking steps to address these disparities. Within the Organization & Delivery of Burn Care Committee, chaired by Phoenix board member Dr. Victor Joe, a working group on diversity and inclusion has been formed. 

Phoenix Society

A few months ago, we launched a survey to help us evaluate our shift to virtual support and digital resources. We included several demographic questions to help us better understand who we try to serve and who we’ve managed to reach.

We sent out the survey by email, social media, and more. In the end, 314 people responded.

When compared to the hundreds of thousands of individuals we serve through peer support visits and online resources each year, that’s a small number. However, we believe it represents some of the most engaged and involved members of the Phoenix community.

Here’s who responded...

  • 80.3% White

  • 4.1% Black

  • 7.0% Hispanic

  • 4.5% Asian/Pacific Islander

  • 0.6% American Indian or Alaskan Native

  • 3.5% Multiple ethnicity/Other

Compare this to the most recent data on burn patients... (7)

  • 59.2% White

  • 20.7% Black

  • 10.7% Hispanic

  • 2.5% Asian

  • 0.9% Native American

  • 5.8% Other

20.7% of burn patients are Black, so why do Black survivors and loved ones represent only 4.1% of the Phoenix community?

As we continue to build inclusive spaces and resources, our priority will be understanding and closing these gaps to ensure that no survivor recovers from a burn injury alone.

“Diversity, equality, and inclusion is a priority for the board and the leadership team,” says Amy Acton. “We are developing an action plan to address these issues, to strive to be an organization that is representative of the community we serve."

How can we improve?

Do you have ideas to make our community and our services more accessible and inclusive? We'd love to hear from you.

Community is Greater Than Isolation

When it comes to equality and inclusion, this community – like every community – has work to do.

Within our organization, we’ll be identifying growth opportunities and taking steps to make our programs and resources more inclusive. We hope you will continue to share your feedback and engage in the dialogue as we move forward.

For many, Phoenix Society represents belonging.

Sometimes people stumble upon us by chance. An article from our Resource Center pops up in their search results. They discover our page on social media and reach out for help.

But more often than not, survivors and their loved ones are connected to Phoenix Society by someone like you.

Whether you’re spreading the word in a survivor group on Facebook, offering peer support, or sharing social skills materials with a patient in your burn unit – you are the bridge from isolation to community.

Join us as we strive to eliminate disparities, break down barriers, and connect survivors and their loved ones to our vibrant community of resources and support.


References
  1. Martha Hostette, Sarah Klein. “In Focus: Reducing Racial Disparities in Healthcare by Confronting Racism.” The Commonwealth Fund. September 27, 2018. https://www.commonwealthfund.org/publications/newsletter-article/2018/sep/focus-reducing-racial-disparities-health-care-confronting?gclid=CjwKCAjwjqT5BRAPEiwAJlBuBRfkyH5iwpm389ruEUwnf9KW494CH5k-V4E9IdTPQ7m1cFpzpP_z3xoCDBUQAvD_BwE

  2. Hala Bedri, MD, Kathleen S. Romanowski, MD, Junlin Liao, PhD, Ghassan Al-Ramahi, MD, Jason Heard, BS, Thomas Granchi, MD, MBA, FACS, Lucy Wibbenmeyer, MD, FACS, A National Study of the Effect of Race, Socioeconomic Status, and Gender on Burn Outcomes, Journal of Burn Care & Research, Volume 38, Issue 3, May-June 2017, Pages 161–168, https://doi.org/10.1097/BCR.0000000000000416

  3. Radha K. Holavanahalli, PhD, Dennis C. Lezotte, PhD, Michael P. Hayes, PhD, Abu Minhajuddin, PhD, James A. Fauerbach, PhD, Loren H. Engrav, MD, Phala A. Helm, MD, Karen J. Kowalske, MD, Profile of Patients Lost to Follow-Up in the Burn Injury Rehabilitation Model Systems' Longitudinal Database, Journal of Burn Care & Research, Volume 27, Issue 5, September-October 2006, Pages 703–712, https://doi.org/10.1097/01.BCR.0000238085.87863.81

  4. Kara McMullen, MPH, Alyssa M Bamer, MPH, Nicole S Gibran, MD, Radha K Holavanahalli, PhD, Jeffrey C Schneider, MD, Gretchen J Carrougher, MSN, RN, Dagmar Amtmann, PhD, 25 Social Integration in the First 2 Years After Moderate to Severe Burn Injury: A Burn Model System National Database Study, Journal of Burn Care & Research, Volume 41, Issue Supplement_1, March 2020, Pages S19–S20, https://doi.org/10.1093/jbcr/iraa024.029

  5. G J Carrougher, RN, MN, S P Mandell, MD, FACS, S B Brych, BS, J C Schneider, MD, C M Ryan, MD, K Kowalske, MD, P C Esselman, MD, N S Gibran, MD, FACS, 24 Factors Affecting Return to Work: A Burn Model System National Database Investigation, Journal of Burn Care & Research, Volume 39, Issue suppl_1, 1 April 2018, Page S17, https://doi.org/10.1093/jbcr/iry006.028

  6. Caroline E Kettering, BS, Francesco M Egro, MBChB MSc MRCS, Anisha Konanur, BS, Brandon T Smith, MS, Alain C Corcos, MD FACS, Guy M Stofman, MD, Jenny A Ziembicki, MD FACS, Racial and Ethnic Disparities Among Burn Surgery Leadership, Journal of Burn Care & Research, Volume 41, Issue 3, May/June 2020, Pages 714–721, https://doi.org/10.1093/jbcr/iraa026

  7. American Burn Association. National Burn Repository 2017 Update. Chicago, IL: American Burn Association; https://cdn.ymaws.com/ameriburn.site-ym.com/resource/collection/4C72F10C-24FD-401C-8608-417BFAB10138/2017_ABA_NBR_Annual_Report.pdf