Get Well Maps: Road to Recovery

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Please welcome our guest blogger, Christina Connors, who I interviewed after she connected with me on Linked In and sent me samples of her incredible Get Well Maps.

What inspired you to create these maps? My son’s medical experience in 2014, and my desire to help other children and families facing medical challenges, inspired me to create Get Well Maps. Andrew was 5 years old when he was hospitalized with bilateral pneumonia and H1N1 flu, and his condition quickly became life threatening. He was air lifted to our closest pediatric hospital (~2 hours away) and was transferred to the PICU secondary to respiratory failure. I felt completely helpless to care for him. There were so many uncertainties. My “Mama Bear” impulses were raging, and yet my background as an Occupational Therapist was underpinning every effort I made to advocate for my child.

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I felt compelled to have a visual that would depict his “Road Home”, because despite the uncertainty of prognosis, timeline or discharge plan, we needed to SEE our goal of getting home in the midst of adversity. I asked my childhood friend to make a map that had a road, photo of our home and matchbox car to move along as his condition progressed (My son has always loved anything with wheels). She was eager to do anything to help, but found it strange that my request of her was a “craft project” (Child Life Specialists & OTs get it). She graciously obliged, anyways. What began as a desperate mother’s attempt to provide a tool to help her child, began to draw interest from his medical team, and sparked communication that connected us throughout his care (“Is that your house?”, “Do you like to play outside?”, “Buddy, you’ve already rounded that bend”…). It was months after our experience, and after becoming involved in our pediatric hospital’s Family Advisory Committee, that another parent encouraged me to develop this idea in a way that would help other children and families throughout their medical experiences.

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What was the process like from your idea to creating the product and your company? I would be lying if I said I wasn’t scared! I was exposing a time in our family’s life that held much vulnerability. But I was also excited about the possibility of having a creative outlet that helped me process our experience in a way that helped others. My faith was strengthened by our experience, and I felt like I was being called into this work. I felt that this was a unique opportunity to combine my experience as a parent and healthcare professional (& my husband is an educator) to make a positive impact in the healthcare experiences of other children and families. I began slowly. Brainstorming, then drafting prototypes, researching materials, production options, searching for the right illustrator, and learning the basics of establishing a business. I use the analogy of a foggy road when I think about the process of transforming an idea into a company, and even now as I continue to navigate and evolve. I can’t always see where I am headed because the road is foggy, but when I have faith enough to move forward, the fog lifts briefly and becomes a little clearer just in front of me, which in turn gives me the confidence to keep going. (Just can’t seem to get away from the road/car analogies!)

Can you tell us a bit about your work as an OT and your experience as a mom? I graduated from the Occupational Therapy program at Towson University in 2002, and have been practicing as an Occupational Therapist for 15 years. I became interested in Occupational Therapy after my Aunt was in a car accident and sustained a C4-C5 spinal cord injury. It was the 1st time my family was truly impacted by disability and I was inspired to learn more about the professionals that were helping her. Since beginning my career as an OT, I have always had an equal love of pediatric and adult rehabilitation. I have experience in hospital, inpatient rehabilitation, home healthcare and school settings. I have always found my work as an OT very rewarding, and am very passionate about working with individuals with neurological disorders and sensory needs. My greatest loves… my hubbie, Mike, and my 2 children are at the center of my world. There was a lot we experienced emotionally as a family during and following my son’s hospitalization that changed my perspective as a mom. I don’t worry as much about small decisions and details, don’t take as much for granted, and really value the importance of finding moments of “calm” in our hectic day-to-day routines. Their love, support, and boundless energy are driving forces behind Child Inspired.

What do you want parents and medical staff to know about children in hospitals? I think many already know, but I think ALL medical professionals need to know that (many, if not most) children and families are not processing auditory information effectively during stressful medical events. Children and families want (and need) medical teams to disclose accurate and honest medical information, but it needs to be delivered with a compassionate, child-centered approach. Don’t be scared of informing children and parents of setbacks or regressions in progress. They know setbacks occur. They just need consistent, jargon-free language that helps them understand what is happening and supports them through the disappointment. Families and medical professionals also need to know that emotional healing will often take much longer than physical healing, and need to be educated on resources that the family can access if emotional or behavioral concerns arise after discharge.

 

What are your hopes for your company? My hope for Child Inspired is that our Get Well Maps will become a model for child-centered discharge planning, and that our tools will also help children and families visualize their progress as they re-integrate back into school and community activities after medical events. In this fast-paced, digital age where much of what our children encounter is instant gratification, many children need support and encouragement as they work towards goals that require time and perseverance. It is my hope that our Maps facilitate positive, encouraging language and communication between children and the adults providing their care.

 

Do you have any tips for how parents and child life specialists might use these maps? I love your profession and the amazing work that you do with children, siblings and families, as well as the work you do to model and advocate for child-centered care among your other medical colleagues. I think that Child Life Specialists can play a pivotal role in daily medical rounding and discharge planning, and that Get Well Maps provide a method for facilitating child-centered communication and visually tracking medical progress. A Get Well Map is fun, and individualized to the child’s interests and goal, therefore, it reduces anxiety by helping you relay and reinforce information discussed in medical rounding (often laden with medical jargon) in a way that is developmentally appropriate and child-centered. Contact us to learn more about how a CCLS is using Get Well Maps with children after bone marrow transplants, and how her unit now has a physician order and pathway to initiate Child Life assessment and intervention (including Get Well Maps) from diagnosis to discharge.
Anything else you want us to know? Thank you for all that you do! As always, I would love to collaborate with you and your teams to develop solutions for your patient populations and healthcare organizations.

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Why Aren’t We Preparing Kids for Disaster

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Beal_Photo_sm Guest Blogger Heather Beal is a military veteran with 23 years of crisis management and operational planning experience that she draws upon daily in her battle to raise two well-prepared, happy, curious, and intelligent children. As a trained emergency manager and parent, she saw the need to provide age-appropriate disaster preparedness information to young children in a way that empowered rather than frightened them. She is currently writing additional books to cover a greater spectrum of potential disasters children may face.

“Generally speaking, we do not prepare our children for disaster. We make them hold our hand in the parking lot and talk about the dangers of getting burned by the stove, but we stop short of this really big “disaster” word. When I think about it, I can come up with a few excuses we call reasons as to why we don’t give this topic the attention that we should.

First, like our children, (but usually without donning the superhero capes and masks), we believe that we are invincible. It (the disaster) can’t happen to ‘us,’ it only happens to ‘others.’ Folks – look at Hurricane Harvey, Superstorm Sandy, Hurricane Katrina, the Indian Ocean Tsunami, and any other number of disasters. With that many people affected – the ‘us’ and the ‘others’ are the same people. We need to look at disaster as a probability, not a possibility.

Second, we think talking about disaster will be too scary. I get it. No one wants to tell children anything bad could happen. We all know our children could get terribly hurt running if hit by a car in the parking lot, but we don’t get into explicit details about injury and death. We do however, talk to them about being safe, making good choices, and not doing things that could more likely result in their getting hurt.

We should approach talking about disaster in the same way we approach other learning topics or the consequences of actions or inaction. We don’t need to focus on the destruction a tornado can cause, how their lives could be uprooted, or what other things could dramatically change. We can however, talk about what children need to do to stay as safe as possible.

There are no guarantees in life for anything. We can’t guarantee that a car in the parking lot won’t do something stupid, just as we can’t guarantee the tornado will miss a child’s house, school, or childcare. But we, as parents, as childcare providers, as educators, as caregivers, as emergency managers, and as community members, can arm our children with the tools to succeed. We owe them that.

Sounds good – but how would I know, right? Fair question. A few years ago I tried to explain to my then 4-year old daughter that she and her brother might be woken up in the middle of the night to go into the basement if there was a tornado warning. Of course, it was already dark and stormy (thunder and lightning and everything). Needless to say, I did a very poor job, ultimately scaring her and beating myself up about my failed attempt to mitigate later fear through a botched explanation. Never again I vowed.

That was when I discovered that almost no one was having the conversation with young kids (toddler, preschool, or kindergarten) about disaster. At the same time, I realized that disaster was not going to sit by patiently and wait until my children could calmly and rationally discuss everything at a grown up level. I decided I could develop a way to talk with them in a way that didn’t scare them, but instead empowered them by teaching them what to do and giving them back a little control in a typically uncontrollable situation. They might not be able to stop the disaster, but they could do something to increase their safety within it.

I started Train 4 Safety Press to develop picture books that would teach children what to do “if.” As I conducted research, I discovered a few books out there on the science of disaster, but almost none that taught young children what to do when the disaster was happening. Our first book Elephant Wind tackles what to do during a tornado. Tummy Rumble Quake teaches children about the Great ShakeOut™ and earthquake safety.

Children have a great capacity for building their own resilience. Teaching them how to protect themselves can have an exponential effect. Children could not only help themselves, they could help their classmates, their teachers, their family and their community. Isn’t anything that increases the odds we bring our children home after a disaster worth it? Can we afford not to talk about it?”

And here is a great resource: National Child Traumatic Stress Network

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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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Caring in Cameroon

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When we observe anything in this world, our perspective is tightly interconnected with our cultural context. As we grow from the egocentrism of childhood to a more expansive view as adults, we may see that not everyone comes from our circumstances, shares our belief system or our way of doing things. At the age of 52, I was a late bloomer in my foray into other cultures. But travel to New Zealand and the Palestinian Territories in 2014, and speaking at the first International Summit on Pediatric Psychosocial Services began a process that continues today. I have learned that “Child Life” has many names and forms across the globe.

As I cast a wide net with my blog, trying to see how I can do the most good, it occurred to me that I could use it as a platform for getting out the good word about what people are doing in other countries to make life better for children in and out of hospitals. So every so often, I will choose a country and share the story of a colleague who is holding the torch of kindness to dispel the darkness of fear and pain for sick children.

My first spotlight is on Macdonald Doh, my honorary son and a head nurse in the Emergency Department of the Yaounde Gynaeco-Obstetrics and Pediatric Hospital in Cameroon, Africa. I met him at the CLC Summit where he represented his country along with 45 delegates from all over the world.  In Cameroon, there is one doctor to every 10,000 people, as compared with 2.4 doctors per 1,000 in the USA. Continue reading