Anna. Lincoln. Dustin. These patients have all shown remarkable resilience in the face of serious medical challenges that have spanned their lives. What gives them the strength to persevere and thrive?
“It’s almost a cliché to say, but children are naturally resilient,” said Kyle Deane, Ph.D., pediatric psychologist and researcher at Shriners Children’s Chicago. “They are more likely to adjust to new realities, even difficult ones. Adapting becomes another part of their growth process.”
A child’s resilience depends on many factors, however. For some, resilience is an innate strength that drives them from within. For others, resilience is influenced by their environment. Either way, resilience plays a crucial role in the healing process, which is why Dr. Deane is leading a study to better measure and understand it.
Measuring resilience
Kyle Deane, Ph.D., pediatric psychologist and researcher at Shriners Children’s Chicago, helps his patients adjust to new realities of their conditions.
Dr. Deane and his team are developing a measurement tool to assess how young people perceive their disability, including their coping resources, potential responses and likelihood of success. Given the significant role that parents and caregivers play in rehabilitation and recovery, a parent/ caregiver report is also being created.
“Resilience can be fostered, which is a huge reason we need this measure,” said Dr. Deane. “By understanding a patient’s mindset, we can personalize our treatment approach. We do this by helping them reframe negative thoughts, encouraging problem-solving skills and building their confidence in their ability to overcome obstacles.”
The collaborative, multidisciplinary approach at Shriners Children’s is instrumental in fostering resilience. “I see the resilience in our patients amplified because of the supportive environment we create,” said Dr. Deane.
Inspiring and motivating staff
Clinicians are key to fostering resilience in their patients, and those same kids and teens inspire and motivate staff in turn. Working with children who have major health challenges might get heavy. But staff say they often go home uplifted by their patients’ upbeat resilience.
Tiffany Romias, OTR/L, is an occupational therapist at Shriners Children’s Northern California, where she has worked with patients with burns for over 25 years.
When Tiffany started out, she was anxious about working with children. She wasn’t sure she could handle it emotionally. That was doubly true when faced with the prospect of treating kids who had devastating burn injuries.
One of her first patients was 8-year-old Anna, who had burns covering most of her body. As part of her introduction, Tiffany observed Anna’s dressing change, debridement and skin grafting.
After the procedures, Tiffany stayed with Anna as she recuperated. Music was playing, and a popular dance song came on — one Tiffany particularly liked, and she started to enjoy the beat. Then she noticed that Anna, who was bandaged and lying in bed, having just gone through an extremely difficult treatment, was bouncing slightly, in time with the music. Tiffany realized Anna was trying to dance.
“It was very powerful and still gives me chills when I think or talk about it. Anna’s body was so damaged, but her spirit was so strong and intact,” said Tiffany. “That was a huge, pivotal moment for me to understand the power of her strength and resilience despite her challenges.”
Lincoln’s determination
“Lincoln is the poster guy for resilience,” says his physical therapist, Laurie Hudson, noting that his positive outlook has been an important factor in his health journey.
“Like tiny seeds with amazing power to push through the toughest ground and become mighty trees, Lincoln holds innate reserves of unimaginable strength,” said Penny Guild, MSSA, LSW, a social worker at Shriners Children’s Erie.
Lincoln was just a week old when he swallowed two button batteries. When a battery gets stuck in the throat or stomach, it can be fatal. A chemical reaction begins that can cause burns and tissue damage. For Lincoln, the batteries damaged his esophagus, trachea, stomach and kidneys and caused injury to all four of his limbs.
Now 13, Lincoln has been a patient at Shriners Children’s Erie since he was a baby. It has not been an easy path for this young teen. He has had surgeries and many therapies and received dietary and nutrition services. Yet, through it all, he has displayed incredible strength and positivity.
“Once you decide what it is you want, just figure it out. Even if you are told you physically can’t, you can,” said Lincoln. “There’s always a way.”
Because of significant damage to all four of his limbs, Shriners Children’s Pediatric Orthotics and Prosthetic Services (POPS) fitted Lincoln with a prosthetic leg and an ankle foot orthosis, a medical device that helps stabilize and control the foot and ankle. Lincoln’s fingers were all amputated at the first knuckle, and when Lincoln was 8, surgeons performed a below-knee amputation on his left leg.
Prosthetist Hannah Clark, CPO, said that Lincoln shows tremendous determination to get the most benefit from his assistive devices. With hard work, his dexterity improved, so he can put his devices on independently, and he has become proficient in using them.
“Despite all he has been through and the effort he has to put in to do daily tasks, Lincoln always has a great attitude and refreshing sense of humor,” said Hannah.
Physical and occupational therapy are also a large part of Lincoln’s treatment. Physical therapist Laurie Hudson, PT, is another care team member who has seen how his positive outlook has been an important factor in his health journey.
“Lincoln is the poster guy for resilience. He continues to seek out more exercises and activities to become as independent as possible,” said Laurie. “He is willing to work hard to achieve a positive outcome and doesn’t give up just because it’s hard. With that attitude, I believe he’ll accomplish his dreams and goals.”
Facing treatments with optimism
Mariana Pineda, Ph.D.
Shriners Children’s Mexico psychologist Mariana Pineda, Ph.D., believes resilience can be fostered by helping patients understand and cope with their medical challenges. “Compassionate healthcare environments like Shriners Children’s help patients and their families manage their experiences,” she said. “We encounter patients who not only face their treatment with optimism, but have also grown stronger from the experience, developing a sense of self-efficacy.”
To help develop these skills, Dr. Pineda implemented the Pre-Surgical Preparation Program, which familiarizes children with the surgical process. Her team designed a surgical simulator using medical materials to recreate the experience in a playful manner. Informative videos, featuring doctors and psychologists who walk through the surgical process, teach patients coping skills such as breathing and mindfulness.
The program familiarizes patients with expected emotions, builds coping skills and fosters mental strength in managing their surgeries and treatment journeys.
Families play an important role
How a family responds to a child’s diagnosis plays a crucial role. Dr. Deane said that often, in the medical world, clinicians are at risk of focusing solely on the individual, but family dynamics and caregiver involvement are extremely important. “When families are well-supported, it positively impacts the child’s ability to cope and heal,” he said. “That’s why getting both the child and parent perspective on our new tools will help.”
Dr. Pineda agrees. “Parents can nurture resilience by serving as role models and using learning strategies to recognize and manage their emotions. When a patient hears validation and recognition from their parents or medical staff, it strengthens their identity, self-esteem and resilience,” she said.
Today, Dustin works as a volunteer firefighter and EMT.
Dustin’s unyielding spirit
Dustin was born with an extreme clubfoot on one leg and severe bone deformities on the other, and his hand was webbed like a duck’s foot. He underwent numerous surgeries at Shriners Children’s St. Louis shortly after he was born to correct his hand and clubfoot and amputate his other leg below his knee. When he was 18, Dustin decided to have another amputation to remove his club foot, as it no longer supported him.
Orthopedic surgeon Mark Miller, M.D., first met Dustin in 2014. He has been impressed by Dustin’s resilience in overcoming the challenges he has faced his entire life, and since 2018, wearing prosthetics on both of his legs.
“Dustin has an amazing outlook and perspective,” said Dr. Miller. “He is an inspiration to me and has served as a guide and friend for several of my patients and families who are faced with the tough decision of continuing reconstructive options versus maximizing function with an amputation.”
Despite these challenges, Dustin never lets his physical differences hold him back. Throughout his life, he has been an avid athlete and loves anything that brings him outdoors — hunting, fishing, hiking and archery.
Now 24, when Dustin is not headed outdoors for his next adventure, he works as a volunteer firefighter and EMT. He is now on a mission to climb wildfire lookout towers.
“Stairs are usually an amputee’s nightmare, which is why I climb towers,” said Dustin. With his physical strength fueled by his mental toughness and resilience, Dustin shows others that if he can do it, anyone can.
