October brings with it a few very important observances including National Fire Prevention Week (Oct 9-15) and National Bullying Prevention Month and for young burn survivors, both of these hit very close to home. We reached out to the University of Utah Burn Clinic‘s Kristen Quinn (a child-life specialist and a professional counselor) for some insight into what children who are burn survivors experience. Recovery from a burn injured is dynamic and influenced almost equally by ones support system, inner strengths, psycho social history, how the injury occurred, support during and after the injury and how extensive the injury is. Please read our interview below with Kristen Quinn.
Tell us what young burn survivors can do to help ease the pain of feeling self-conscious.
As far as easing the pain of feeling self-conscious, there are several approaches that seem to be helpful. I am a big proponent of making a plan. Plans help kids feel in control at a time when they have lost quite a bit of control. In most cases, this builds confidence. A plan begins acknowledging that people will stare and will likely ask questions. We don’t have to spend to deciding what their intention is or how they are feeling. We just need to spend time preparing how to respond with our best self. Otherwise, kids with burn scars may spend a lot of time replaying the interaction in their minds. Start with creating and practicing a rehearsed response. One sentence about what happened (e.g., “I was burned in a house fire”). One sentence about how you’re doing (e.g., “I’m much better now” or “getting better has been really hard work”). Finally, one closer sentence (e.g., “I’m sure you can imagine it’s hard to talk about” or “thank you for asking”). You can find more information about this technique on the Phoenix Societies Web site: www.phoenix-society.org
School re-entry programs can help a lot when it comes to educating a large number of classmates about what happened (the rumors that tend to go around are often shockingly wrong), how the student is doing, medical equipment classmates might see, care the student still has to go through and what the student can do. This is a time that many children like to tell their classmates how they would like to handle questions (e.g., “please come to me with questions”, “write your questions on a piece of paper and put them in the box, I’ll answer questions once a week”).
The next step in preparing is to make a plan with family and friends. This might be creating a strategy about meeting on the playground so the student is not alone. Or, setting goals for going out into public. Or, how a child would like their parent to respond when someone stares.
I think we also have to be careful about the language we use. When we use value based words like “pretty” or “good”, kids will be more likely to compare themselves to societies perception of these terms. When we use “healing” or “healthy” or “hard work” we send a different message.
How does a severe burn that can affect a large area of the body happen, and in how short of a time? What are the most common ways that young people are exposed to burns?
Children get injured in a wide variety of ways. There are differences based on where in the country people live. Here in the west, campfires are a major cause of injury for both children and adults. This is not as common in other areas of the country. House and apartment fires are more common in large urban areas. Burning trash and weeds is common practice in very rural areas and a source of devastating injuries as well. Bathrooms and kitchens are very dangerous places for young children. It can take just a few seconds for a baby to sustain a life changing burn in water that is too hot (too hot for a baby is different than too hot for an adult). Glass front fire places and sparklers are also common causes of injury. As kids get older, they get more curious and more mobile. This opens them up to playing with matches, lighters and gas. School aged children may start using the stove unsupervised, which can lead to injuries. Microwaves heat water to a very hot temperature very quickly and are usually located on a higher shelf. These injuries are common among a wide range of ages. More information can be found on the University of Utah’s web site or on the American Burn Association’s web site. Basically, a devastating burn injury can happen very quickly (seconds) from a large variety of mechanisms.
What are some common emotions and issues that young burn survivors experience as they acclimate back into society?
The range of emotional responses burn injured children experience is vast and complicated. Burn survivors experience gratitude for survival, hope, new found strength, confirmation from their support system that they are in fact loved and supported. They also experience fear, shame, guilt, nightmares, flashbacks, insecurities regarding the safety of their world, loss (of home, of looks, of belongings, of function) and anger. It is possible to be angry and grateful to be alive all at the same time. Parents also experience this wide range of emotions while also feeling protective of their child. Most parents would change places with their child in an instant and feel so much guilt associated with knowing their child is suffering. Most parents blame themselves for the injury even if they were nowhere near the accident and could not have anticipated or prevented it.
What can people around burn survivors do to make the survivor feel accepted and included?
There is a lot we can do to help burn survivors feel accepted. Invite them to play. Ask about their scars. Look them in the eye. Find a genuine reason to compliment them. Include them. Teachers should explore what limitations they really have, work with those limitations and then set the same expectations and boundaries for a burn injured student that they do for other students. If there are fundraisers for burn camps, the local burn center or community events, attend with the child and their family; it is helpful to know that they have your support. Be mindful of how guilty parents can feel and avoid questions or comments to them that will increase their guilt even more. This is most parents biggest fear and it is common to focus on what someone “did wrong” because then we can somehow convince ourselves that this horrible thing would never happen to us. Parents of a burn injured child need their parent friends to support them and pull for them. A simple “I’m so sorry this happened” or “this has got to be so rough for you guys how can I help” are supportive things to say. Of course there are true cases of neglect and abuse; medical providers are mandatory reporters of any concerning injury and work closely with child protection teams.
Do burn survivors need to see doctors often throughout their lives, after the burn has healed, because of how it may have affected the skin? What can burn victims do to heal their burns?
Recovery from a burn injury is long. People are often in the hospital for months. Most people leave the hospital with some remaining wound care, physical therapy and scar minimization tools (eg, pressure support garments, splints, casts). Wounds can be slow to heal and painful. The pain mostly subsides when wounds are healed. But, the remaining scar tissue itches- it is difficult to describe how intrusive and chronic this itching can be. Scar tissue does not know when to stop growing and can grow aggressively for up to several years. Scars that are over joints want to pull together making it difficult to move these joints (eg, hard to raise your hand over your head). The physical therapy (which is daily, painful and long term) helps keep skin, muscles, tissue and tendons flexible and pliable. Pressure support garments teach the skin to lay flat and smooth and have to be worn over all areas with scars (including the face). Splints and casts help hold joints in functional positions to increase range of motion. Parents learn how to do their child’s wound care and physical therapy before they leave the hospital and become active partners in their child’s recovery. Depending on the burn size and location, children may come the burn center for outpatient wound care and physical therapy several times a week in addition to the daily care done at home with parents. Compliance with these cares at home greatly impacts long term functional and cosmetic outcomes. Children stay in contact with their burn team until they are finished growing; sometimes growth spurts happen more quickly than scar tissue can stretch and they are back in the hospital for more surgery.
Bio-Oil®, the award-winning specialist skincare product that helps improve the appearance of scars, stretch marks and uneven skin tone, has launched their “Be Comfortable in Your Own Skin” video campaign. The video, made in partnership with the Phoenix Society for Burn Survivors, addresses the life-changing benefits that burn camps, such as Camp Nah Nah Mah run by the University of Utah, and their specialized programming, can offer young burn survivors. For every share of the video, Bio-Oil® will make a $1 donation to The Phoenix Society, the leading national nonprofit organization for burn survivors.