Child Life & Nursing: Practicing pediatric psychosocial support in Novy Jicin

 

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My recent visit to the Czech Republic, sponsored by the Klicek Foundation, included a return to the Mendelova Nursing School in Novy Jicin. This time, Maria Fernanda Busqueta Mendoza joined us from Mexico, and 50 students participated in our seminar, making it a great opportunity for global learning and a multicultural exchange of ideas. As you can see from the first photograph, the students were a lively bunch, and they eagerly participated in the highly interactive time we spent together. Jiri Kralovec served as our interpreter and his son, Jiri, touted  by Foto Video Magazine as this year’s hottest photographer on Instagram, documented our learning. Most of the photos below are his work.

Jiri and his wife, Marketa, started us off by sharing information about  the importance of play for hospitalized children and the history of their efforts to bring hospital play to the Czech Republic.  It has been a slow, uphill battle to change the hierarchal and disempowering bureaucracy of their medical system.  I followed with an introduction to the field of Child Life, the role of child life specialists in hospitals, and the possibilities for collaboration with nurses. I spoke about the role of play and community in the healing process, before moving on to some illustrative activities.

Sharing our own memories of play is one way to deepen our appreciation for the role of play in our lives and in the lives of children. I asked the class to think about their own childhood memories, using their five senses — what do they remember about their play environment? Did play occur inside or outdoors, or both? Were they playing alone, or with others? Did they play with toys, loose parts, or their imaginations? Are there sounds, smells, tastes or textures associated with their memories? What feelings are evoked in sharing them? The students paired up and took turns both sharing and listening to one another.

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Armed wth a deeper awareness of the value of play, the students were now ready to learn a bit about how to make procedures less frightening for children. I have always wanted to use role play as a way to demonstrate all the things that can go wrong during a procedure, and how minor changes can make things easier for medical staff, children, and caregivers. I took this opportunity and asked for volunteers. One young man played the patient. We instructed him to lie down and asked three others to pin him down to the table, much like medical personnel are likely to do when a child receives an IV. We demonstrated how the very act of being forced into a prone position increases one’s sense of vulnerability and loss of control.

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Add to that several adults talking at once, loudly over any protests you might make, telling you to stay still, not to cry, to be a big boy, not to look…. and you get the picture. Chaos, stress and shame accumulate to make for a disastrous experience for all.

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But there are some simple things that nurses can do, either alone or in partnership with play specialists, to change the outcomes of such procedures. It doesn’t mean that the child won’t cry, but it is more likely that the child won’t suffer emotional trauma, will return to baseline quicker, and the nurses can feel more successful and less like they are causing the child undue suffering.

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With these tips in mind, the students enacted a better case scenario, where the parent has a supportive role in positioning the child for comfort. The child is upright and held in a calming hug, rather than being restrained on the table. The child is given some choices, such as which hand to try first for the IV (the non dominant hand is preferable), and whether to watch the procedure or use a toy or book for distraction.

  • Electing one person to be the voice in the room,
  • encouraging the child to breathe deeply and slowly,
  • narrating each step of what the child will feel,
  • explaining how a tiny plastic catheter, not the IV needle, remains in the child’s hand to deliver medicine,
  • staying away from comparative or shaming statements,
  • and showing empathy

are all ways to provide psychosocial support, making the experience less traumatizing and painful for the child.  Accumulated painful and traumatic medical experiences can make children phobic and avoidant of medical care.

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We also spoke about non-pharmacological pain prevention and reduction. The interactive component of our lecture surely made our important information memorable. The action and laughter surely made more of an impression than a power point! We all reflected together about  how even adult patients can benefit from choices, information and empathy.

Back to the topic of play, we explored ways for the nurses to instill playful interactions into their communication with pediatric patients. Rapport building and distraction through the use of hand games is one way that they can put a child at ease. I demonstrated several hand games, and asked them to show me some of theirs as well.

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Our time with these wonderful students ended all too soon. We posed outside of the school for a photo with some of the Klicek Foundation hospital play specialists before heading to the historic square down the street. Around every corner of this country is a beautiful scene, no matter where you are!

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Bilingual Book for Pediatric Cancer Patients

My thanks to Marifer Busqueta for connecting me to this wonderful bilingual children’s book for children and families facing cancer:

 

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The information below is copied directly from the book’s website benito books. Marifer herself has written a children’s book in Spanish to address children’s questions about loss and death, “I want to know what is death?”. It is wonderful to have access to books for Spanish speaking and bilingual children facing illness and loss.

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Home About the book News/Events Buy your copy

Overview

Benito, You Can Do It! Volume 1 is the first in a series of bilingual picture books for children diagnosed with cancer. This 80-page (40 in English and 40 in Spanish) picture book depicts a Latino family facing childhood cancer and uses a soccer analogy to explain the roles of the medical team.

Pages from the book

Written and illustrated by Alan Quinonez, this book helps parents find strength and hope when one of their little ones has been diagnosed with cancer.

Our Goals

The picture book series Benito, You Can Do It! has been inspired by the testimonials from the families in the Latinas Contra Cancer Parent Support Group as well as the expert knowledge and input of the medical team at Stanford’s Lucille Packard Children’s Hospital.

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Our goals in developing this first-of-its-kind book series reflecting the Latino experience are:

  • To the affected families to share the resources, advice, and best practices learned from the cancer journey with their child.
  • To show the cancer survivors that this is an opportunity for them to step into the limelight and reach out to those who might lose faith.

The book series

Our first volume The News, helps children and their families cope with a recent diagnosis by providing a better understanding of the disease, and the medical team that will be helping them.

Upcoming volumes in the series are:

  • Vol.2 The Awareness (working title) Will explain how the immediate family of a child with cancer faces twice the risk of developing the disease, and what steps the family can take to reduce the risk.
  • Vol. 3 The Treatment will explain the different types of treatment and life at the hospital.
  • Vol. 4 The Siblings will help brothers and sisters process their own feelings of being set aside and neglected.
  • Vol. 5 The Return to School will explore the anxiety that children face when they go back to school before their hair has regrown.

Our fundraising on Kickstarer

From Sep 6th to Oct 6th 2013, we ran a kickstarter fundraising campaign.

Thanks to the generous donations from 171 backers, we were able to raise over $12,000, which allowed us to cover the costs of print, as well as set aside 110 books and make them available for free to families in need!

At our campaign page you can:

About the author/illustrator
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Alan Quiñonez is a writer and illustrator working on his dream of telling stories that cross language barriers and foster a message of hope and strength in children and families around the world. He lives with his partner in North Hollywood. His personal website is alanrq.com

About Latinas Contra Cancer

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Latinas Contra Cancer is a decade old nonprofit based in San Jose, California. Founded by Ysabel Duron, a cancer survivor, this agency, one of the few of its kind in the country, works to improve outcomes for Latino families affected by cancer by increasing awareness and knowledge, access to care, and psychosocial support.
Learn more at latinascontracancer.org

Building Bridges Instead of Walls – Teaching & Learning in Mexico City

 

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One week post-election, I found myself bound for Mexico City, ready to teach and learn alongside my adventure colleague, Maria Busqueta. Marifer, (as I call her) hosted me in her home town, where she is a child life specialist, psychologist and educator. It was a whirlwind couple of days, as we visited the General de la Raza Hospital, learned about the Ayudarme a Sonreir ante el Cancer Foundation, The Vuela Foundation, taught a class on play techniques for adolescents, and attended a two-day conference on palliative care. Phew!

My first impressions of Mexico City and Marifer’s neighborhood: Unexpectedly cold and wet. Lovely hills rising up from the urban center. Cypress trees in plenty and Bougainvillea in bright, fuscea explosions amongst the trees and spilling down high stone retaining walls. Hilly, winding roads with speed bumps everywhere instead of stop signs. Heavy and erratic traffic. Cold mornings and nights. Marifer’s house has many levels to it, all encased in gingerbread auburn ceramic tiles. Like my home, the kitchen and living room are on the upper level, with bedrooms below. Marifer’s jaunty beagle, Duncan, lords over the front yard and threatens escape with each coming and going of a human being through the iron gate. Marifer’s mother cooks for us several times a day, filling me with homestyle Mexican fare. It is mere moments before I feel like family.

We are up bright and early my first full day there, ready to pay a visit to the Hospital Raza. Lisette Garcia Urenda, the founder of the Ayudarme a Sonreir ante el Cancer Foundation (which translates as “We help you smile after cancer”), is hosting us, and we meet her outside of the largest and oldest public hospital in all of Mexico. The sidewalks surrounding the building team with merchants hawking their wares, everything from pork roasting in a cauldron to magazines and fruit. We weave past the stalls and in through the back emergency entrance to the hospital. As we enter the foyer, several pediatric cancer patients and their families are exiting the hospital, bundled up for discharge and eager to be home. But they stop to hug, kiss and chat with Lisette. They shake our hands and offer “mucho gusto” as Lisette introduces us.

It is clear that the children and their caregivers adore Lisette. And it is easy to see why – she is all brightness, high energy and love. One teenage boy jokes for me to take him back to the United States with him. The younger children glance at us shyly.

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There are three events planned for the day, two presentations to patients and a therapeutic art activity to be conducted on the inpatient ward. The foundation grants wishes for pediatric cancer patients, and families have gathered to witness Lisette’s presentation of a wish to a young girl. They sit in tiny, child-sized plastic chairs around the parameter of an open roofed waiting area. The children sport face masks, bald heads, hats, and winter coats with good reason. It is cold.

The child is brought to the center of the room, and Lisette introduces her to everyone. I am regretting in the moment that I don’t understood more Spanish, but it seems that she is telling them how well the girl is doing post bone marrow transplant. With great flourish, Lisette hands the girl a large present. The child opens it with excitement and beams at its contents, an “alien” doll that  is apparently quite the rage. It’s hard not to note what a child with cancer might have in common with the toy. Both are bald; both might need to be isolated because of threatening germs in a hostile environment; both may need to be fed through a tube in the stomach. And, any child who has such a diagnosis may often feel like a misunderstood species hovering over the more typical lives of healthy peers.

The child hugs Lisette. The onlookers clap, and I wonder if they are envious of her.  Lisette explains to me that most of them will have a wish granted at some point, so that no child feels left out. Later, the child’s mother is crying in the hallway, sharing bad news with her social worker. Her daughter has relapsed. The bone marrow transplant didn’t take.

Lisette says that many of these children die, and that in order to do her work, she must get lots of therapy and continually study and obtain higher degrees. This is why she is a current student of Marifer’s. She does the work because when her father-in-law died, he told her that she must work for the forgotten children. She says that many of these children don’t have electricity in their homes.

The next planned event is the presentation of a natural hair wig made from five individual donations of hair. The recipient is a six-year-old girl. She is very shy and quiet. We are in a hall outside of the infusion clinic. The floors are buckled and seams of cement overflow the protruding tile. I wonder if this is from an earthquake. Nurses wear white and institutional green uniforms, donning plastic nursing caps in the same colors. I feel like I have stepped back into the 1950’s, except for the fact that they are all taking photos on their cell phones as Lisette presents the wig to the child.

Lisette speaks with the girl for quite some time. She reassures her that she needn’t speak if she doesn’t wish to, that they can communicate with their eyes. Lisette tells the child about the beauty of her heart, that the wig is just an accessory, that her beauty is not dependent on whether or not she has hair.

You must say to yourself every day in the mirror: “I am beautiful!”

The child tries on the wig and looks in a mirror provided by Lisette. Everyone poses for photos with her. In the end, her mother repacks the wig carefully in the box, and they are on their way.

Lisette leads us through a chaotic and crowded hallway to a packed elevator that carries us to the inpatient  pediatric oncology unit. In the hallway between two separate wings (one designated for solid tumors, the other for liquid), is a small but well equipped playroom. Siblings and patients mingle at child-sized tables. There are floor to ceiling shelves laden with cause and effect toys, a toy hospital, dollhouse, action figures (“for boys” says the playroom coordinator), blocks, puzzles, games and art materials. There is a large dollhouse in a corner, a kitchen play set, and several large bookcases overflowing with books. Lisette’s foundation supplies the  DVD lending library. One child sits with an adult working on a puzzle. Another plays with the dollhouse. A mothers group meets in the waiting room next door. The only thing I feel is missing is a medical play corner and sensory play materials. A flatscreen tv plays a Disney movie overhead.

Lisette has plans for an expressive arts activity. She brings us to the liquid tumor wing, into a room with six beds. Five children between the ages of two and fourteen seem excited to see Lissette and very open to our visit. The six-year-old boy is talkative and funny. After some quipping back and forth, Lisette hands out crayons and art paper to the children with a body outline on it.  But before she can begin to explain the instructions, the two year-old’s mother leaves the room, and the toddler begins to cry loudly and  inconsolably . She sits in her cage-like crib, crying desperately, reaching both arms up as if asking her absent mother to pick her up. Either that, or she is imploring the Gods to bring her mother back!

Lisette approaches with kind words, but the toddler is having none of it. She screams louder. Lisette offers her crayons and a “Frozen” coloring book. The child cries “No!” and turns away. Lisette is unperturbed. Using the surroundings, she jumps quickly into a bit of improv. The room has been newly decorated with a brightly colored mural on all four walls, ceiling to floor. It is a nature and farm scene. Near the girl’s bed, close to the floor, a mother duck swims with her three ducklings on a bright blue pond. Lisette launches into a conversation with the ducklings, turning her back on the toddler, lessening the child’s stranger anxiety by ceasing direct eye contact. She engages everyone in the room in asking the names of the ducks. She suggests the proffered names, and the little girl shakes her head in protest at each one. But she has stopped wailing and is watching Lissette intently. Lisette blocks the child’s view of the mother duck and tells a tale of the ducklings searching for their mother. She reassures the girl that her mommy will always return. We all sing the song “Five Little Ducks”. Lisette offers the coloring book again, asking, “May I put it on your bed?” The child accepts and begins to color.

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Lisette conducts the art activity with success. She speaks to the children about the variety of emotions we all have. She says they will play a coloring game based on a game called “Basta!” (enough). She takes turns calling out emotions, and each time they must grab a crayon and color within the body outline to represent where and how much of that emotion they have until Lisette yells, “Basta!” Lisette is very lively and whips the kids up into a coloring frenzy. She begins with the emotions of fear, anger, and sadness, and ends with love and joy. I am sitting with the toddler, who is methodically drawing many tiny, blue circles on each page of her coloring book, while she listens and glances at the other children. She watches closely as a nurse enters the room and approaches the six-year-old. The boy grins and says, “It’s good that you are here. My IV is backing up.” The nurse adjusts his IV, then moves over to the toddler, preparing medicine in a syringe without a needle. The toddler opens her mouth complacently to receive it without complaint.

The fourteen-year-old has gone for a walk. I had noticed when I entered the room that she didn’t appear physically ill. She has all of her hair, and is not connected to an IV. She wore a contented, cheerful expression while she chatted on her cell phone. Soon, it is time for us to move on. The teen has returned to her bed. We all pose for photos. All the children except the toddler smile. She still appears a bit somber.  I am the first to leave the room, and the teen’s caregiver follows me and grabs my arm in the hallway. She asks if I understand Spanish and begins to pour out a story to me that even with my broken Spanish, I can piece together. She is not the teen’s mother, but her aunt.

Two weeks prior, she, her two sisters and family members were traveling by car in a caravan. There was a horrible crash. The teen’s mother and father were killed. Her brother lies in critical condition in the ICU. Although the teen was unharmed, the tests she underwent at the hospital revealed that she has cancer. She had only just learned of her parents’ deaths the day before. I struggle to match that news with the image of the calm, smiling teen I’d met. Was she in shock? Denial? Is it her Faith in action?

The aunt shows me photos on her phone of her family, as well as a video about a teen whose mother dies. She says she is a Jehovah’s Witness and believes that we will all see our loved ones again after death. I tell her that I will carry her family in my heart.  I think about how much good healthcare in hospitals involves helping patients and families to tell their stories. This seems true in every country I visit. And in every country thus far, families don’t hesitate to share their stories with a stranger. Perhaps it is easier to tell a stranger. But it is more than that. This woman, and others I have met, seem compelled to share their narratives, as if we couldn’t stop them if we tried.

Leaving the hospital, I am sad, exhausted and hopeful in equal measures. Lisette’s work makes a mark. Listening makes a difference. The children won’t be forgotten by us. Shared stories tear down cultural walls.

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Play the Japanese Way

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Trepidation was the word of the day as I prepared to teach play techniques in Japan. How would I  cope with teaching in eight hour increments to students and professionals whose primary language was Japanese?  How would the participants respond to me? I barely ever lecture at Bank Street College, but here it would be the expected modality of teaching. I worried for my students who would have to listen to my English first before Chika Matsudaira, my hosting professor,  translated everything I said.

But I should know by now that everything works out in the end. Here are some highlights from the four groups we taught, some new to the profession, others in it for years. They included students, hospital play specialists, nurses, nursing administrators, nursery nurses (early education professionals working in hospitals), occupational and physical therapists and one child life specialist. In the span of 5 days, we taught a total of 91 people. The photos and video footage below include scenes from all 4 classes.

The first group in Shizuoka were new hospital play specialist (HPS) students who had travelled from all over the country, and the day began with a ceremony welcoming them to Shizuoka University. The university president and administrators attended, as did a local reporter. The students first appeared very serious and somber. Here is the before shot taken during the ceremony:

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But we all warmed up to each other pretty quickly. Here we are at the end of the second day.

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Thanks to the reporter, an article featuring our class appeared in the next day’s Shizuoka paper.

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We began with my theory of a “Play Needs Continuum”. It describes 9 ways to deepen play opportunities for children in hospitals. Chika had translated my power point into Japanese.  When we spoke of raising awareness about the value of play, students paired off to share play memories from childhood.

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When we addressed the use of self as a distraction tool to use during medical procedures, we all shared songs  and hand games from our cultures (click on bold green to see videos). Maria Busquetta from Mexico got everyone singing “Twinkle Twinkle Little Star” in Japanese, which impressed everyone very much. I taught them the invisible needle and thread trick.

When we needed to move our bodies to keep alert, Chika demonstrated “laughter therapy”. On most days, I started the day with the game “whoosh”, where the group passes an imaginary ball around a circle making sound effects as they go along. I had never tried this with more than 15 students, but it worked well even with the large group of 40 from Tokyo. Their improv skills with action and sound effects were great.

The students enjoyed making volcanoes (Kaduson, 1997), throwing wet toilet paper at a drawing of things which angered and frightened them (Kaduson, 1997), making oobleck and playing with shaving cream. Rolling up their sleeves to play helped them understand first hand the value of these techniques for hospitalized children.

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The students traced one another on paper and dry erase board for the “Wonders of the World”  activity (Carman, 2004). This activity helps traumatized kids and teens find hope and connect with a vision of the future as they draw what they would like to see with their eyes, smell, hear, taste, do/make with their hands, and where their feet will take them.

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And last, but not least, we  demonstrated and practiced child-centered play techniques (Landreth 2012).

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The students were so willing and playful that the eight hours flew by each day. I have no doubt that children will be playing their hearts out throughout hospitals in Japan where these folks are training and working. Playing the Japanese way is a wonderful way to go.