CHILD LIFE HEROES: “MY FAVORITE PERSON IN THE HOSPITAL”

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Guest Blogger, David Nesbitt from SpellBound

Twenty years ago, when Peggy Schuster started work as a child life specialist at Providence Children’s Hospital (PCH) in El Paso, TX, the child life program had just launched. Within a few years, Ana Aburto joined Peggy on the team, and for sixteen years now they’ve been a dynamic child life duo helping patients and their families at PCH.

I talked with Peggy and Ana recently about some of their experiences in child life, from their favorite parts of working as a child life specialist to some of the most important aspects of their role. They also shared some of their remarkable stories from working with patients in the last year.

CHILD LIFE HEROES- MY FAVORITE PERSON IN THE HOSPITAL
From left: Ana Aburto, Michelle Carrillo, Peggy Schuster

Ana told me that one thing she loves about child life is how there are new challenges every day. “The most exciting part of my job is finding new ways to help patients,” she tells me. “I come from an educational background, and at times it becomes a teaching challenge for me; how can I use my creativity and the resources that I have to help these kids reduce their anxiety?”

One of Peggy’s favorite aspects of her role is her responsibility to focus on the patient and advocate for their emotional needs, which can get lost in the busyness of the hospital. “Often, medical staff end up talking more to the parents than the child. Patients have told us ‘I feel invisible.’”

Child life specialists have to stay closely attuned to what their patients are thinking and feeling. Their powers of perception are crucial, and can help turn a potentially scary and traumatic procedure into a smooth procedure with no tears. When they recognize what a patient is experiencing, they can come up with solutions to help the patient better cope with the treatment they’re going through.

Peggy had a recent situation at PCH that required her to cut through the noise of a chaotic situation to bring peace to a young patient. “We were working with a little 4 year old girl and we couldn’t get her to sit still for a procedure. She was screaming and crying,” says Peggy. The doctor and the nurses were trying to calm the girl down, but everyone was talking at the same time and Peggy could see that it was overwhelming for her.

“I asked them if I could try something—so they all moved back and I took out the SpellBound cards and was talking to her,” Peggy tells me. “She started interacting with the cards and she calmed down.” Peggy told the girl that she needed the procedure, but told her to keep focusing on the cards. Using the SpellBound cards along with relaxation techniques, the patient stayed calm and the doctor was able to finish the procedure. “Everyone was surprised at the cards and their effect, and looking at me like ‘Gosh, what did you pull out of your pocket… a magic wand?’”

When that girl was leaving the procedure room, she looked up at Peggy and told her mom, “That’s my favorite person in the hospital.”

During our conversation Ana tells me about the first time she used SpellBound with a patient. “It was during an IV start with a 3 year old girl that had a lot of anxiety,” says Ana. “The anxiety was being fed to her through the parent that was with her; they were more anxious than she was.” When it came time to put in the IV, Ana pulled out the mouse Journey Card for the patient to use.

“What she did surprised me,” Ana tells me, “because she used it to communicate to the nurses that she was feeling something.” Every time the girl felt something during the procedure, she’d touch the mouse to make it squeak. Ana, using her child life perception powers, noticed her doing this and asked, “Are you letting the nurse know that you’re hurting?” The patient said, “Yes.”

Using the feedback from the patient, the nurses were able to get the IV started after a few minutes. When they were done, the little girl left the procedure room to return to her family, who was waiting outside for her. “She was excited; she wanted to show them how she had managed to get through the procedure using the card,” says Ana.

 

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“I thought, ‘Wow, this is going to work on every child.’ It was an eye-opening experience for me.”

Given that it was her first time using SpellBound, Ana was surprised at how easy it was to use and how well it worked. “I’m not a very technical person. I thought, ‘Wow, this is going to work on every child.’ It was an eye-opening experience for me,” she tells me. And she points out that all the elements had to work together to make it a successful procedure. “It was a combination of the SpellBound technology, the observing, and the teamwork.”

As Peggy and Ana have practiced as child life specialists over the years, some of the methods and tools have changed; when they started, there were no iPads, and certainly no augmented reality cards for distraction. But the core of their role is still the same as it ever was. They’re still observing what patients are experiencing, advocating for them, creatively finding ways to meet their emotional needs, and helping them cope with the fear, uncertainty, and pain of treatment. Today, they just have some new tools to assist them.

Kids go through a lot when they’re getting medical treatment at the hospital. And child life specialists like Peggy and Ana are the heroes that help make it a little better.

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Children’s Pain Captured in Art

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Guest Blogger, Standish Foundation for Child & Family Centered Healthcare

Artwork is a powerful therapeutic tool to help children and caregivers express their emotions about their medical experiences. Children often have a difficult time verbalizing feelings associated with pain and the modality of art provides them the opportunity to explore, create and gain mastery.

We are currently working on a project to help medical team members globally have a deeper understanding of pain and the impact that it has on children and families. We provide them with education and training that involves a patient and family-centered care approach. These coping strategies decrease trauma, provide children with a sense of control and have a positive outcome for everyone involved.

We need your help to spread awareness of pediatric pain management, so we are seeking two different types of artwork from kids and caregivers. One is about their perception of pain and the other is about how they feel after a coping strategy was used, such as medical play, comfort position, distraction tool, pharmaceutical relief, bravery reward or something similar.

If you would like to submit an image of artwork from your kids, yourself or from your patients (with consent), please email them to info@SF4C.org.

Thanks so much for all your support!

What a Child Wishes For When They Have a Sick Parent

What a child wishes for when they have a sick parent

When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”

I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.

I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.

This rare, incurable, autoimmune illness had incredible power over us and I wanted to destroy it with my wishful thinking.

As you can guess, it never came true.

However, other unexpected wishes did.

Resiliency, Empathy and Hope.

These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.

I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults and I would speak up. They needed to be aware of an invisible disease.

I wanted people to feel included and accepted as they are.

Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.

Those were nights that I searched for a shooting star.

I became very comfortable in a hospital setting and I loved to rummage through their storage cabinets and take whatever I was allowed to, ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadow to my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it is never an individualized disease. I know there are always setbacks with an additional diagnosis, complications, and waiting for an FDA approved treatment. I know that people living with chronic illness don’t want to have a pity party or talk about their health, they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and other’s that struggle with life’s challenges and still find the courage to push forward.

I’m now 35 and still making wishes.

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