Monthly Archives: February 2012

Setting up child life services in India: appreciating cultural differences while embracing our similarities

Jeanine Clapsaddle is a Child Life specialist from Children’s who is in India for two months to help set up Child Life services at Manipal Hospital.

Jeanine’s trip is in partnership with the Priyanka Foundation, which was established in memory of a former Children’s patient who wanted other kids around the world to get the same Child Life services she received during her cancer treatment.  Jeanine is documenting her experiences through this blog series.

This is the second report from her trip:

 

Several days ago, I met a boy, Ballal, who was admitted to the PICU with an injury from an accident. He left his home in search of something fun to do and wandered into a factory that was in full operation. He came into contact with a machine that wrenched his right arm off at the shoulder and left him with a gash from above his eyebrow, down his nose to his chin. He is 6 years old.

A referral was made to Child Life from the attending nurse to “bring him toys and make him happy.”  I hear this request at Children’s as well and understand that it is an easy way to compartmentalize a creative and varied therapeutic practice.  In this case the statement was less about knowing the full offerings of Child Life, but more about a cultural belief that children should not be unhappy, for any reason, and playing with toys is a curative for unhappiness.

Although I may not speak the language, the gestures of pacifying and soothing are universal, as are some of the coping reactions some parents lean on when a child is in pain.  Things like shushing to the point of a parent putting their hands on a child’s mouth to get them to stop crying, giving them money or prizes to soothe them, tricking them into coming to the hospital or not properly informing children about the need for their healthcare experience so as not to upset them—these are all easy traps to fall into that can actually increase tension for a child.

In Ballal’s case, he was attempting to talk to his mother about his accident to better understand what had happened to him, to sort through emotions of guilt and shame, and to plead with her to stop the antibiotic infusions, which he found painful.

His mother was afraid of upsetting him so she shushed him and told him not to talk about it. We were able to talk with Ballal’s mother and explain the potential reasoning behind his questions. We also developed a plan for giving him some basic information to help him cope with the infusions as well as provide some diversion for him during the infusions. Although she did not come to a point where she could engage her son’s questions, Ballal’s mother was able to make room for services that could support him and she witnessed his decreased stress level through play.

When I came to India, I anticipated that the cultural rules and mores would be so different from my own that it would take me the entire duration of my stay for me to begin to see and vaguely understand these customs. What I have come to find is that the dynamic between parents and children is one that changes very little regardless of where you are at on the globe.

Ballal’s story is not so far removed from patients who come to Children’s who are involved in farming accidents, children who are too young to be left unsupervised, children who just do not want to be in the hospital, and parents who do not want their children to suffer, emotionally or physically.  How many times have I approached new families at Children’s and faced parents reluctant to educate their children because the medical information is too frightening for them as parents that it is too scary for them to know how to share with their children.

Sometimes when we meet families who come from a cultural background that is different from our own, we quickly call to light the differences between us in hopes of acknowledging and respecting those differences. Somehow, when thinking about Ballal and his mother, I am reminded of the small ways in which we are the same and how much progress can be made by acknowledging our sameness.

Jeanine Clapsaddle
Child Life Specialist
Children’s Hospitals and Clinics of Minnesota

 

The first report from her trip can be read here.

Setting up child life services in India: introduction to Manipal

Jeanine Clapsaddle is a Child Life specialist from Children’s who is in India for two months to help set up Child Life services at Manipal Hospital.

There to fulfill the dying wish of a former Children’s patient who wanted other kids around the world to get the same care she received, Jeanine is documenting her experiences through this blog series.

Here is the first report from her trip:

 

After my first days at Manipal Hospital, I feel hard pressed to capture all that I have experienced in a way that does justice to the people I’ve met and the unmistakable presence of hope that lives here.

Much like Children’s, Manipal is in a perpetual state of renovation and construction. Some areas we toured are quite archaic by our standards; multiple patient beds in the same room (children and adults together), metal beds with peeling paint, IV bags that run on gravity rather than with any sort of pump, dented metal bowls used as bedpans for children, parents sleeping on the floor next to their child’s bed, dim and sporadic lighting, etc.

I discovered that the inpatient units of the hospital are separated not by diagnosis or specialty, but rather by an individual or family’s ability to pay for the healthcare. This unit is for people who cannot afford better healthcare. The most luxurious rooms in the hospital are utilized by celebrities, dignitaries or people from other countries who can afford to pursue healthcare wherever they choose.

The more technical areas of the facility such as radiology are quite modern and similar to what one would find in the US. In some ways it is difficult to grasp the extremes between these two settings and simply chalk it up to the renovation process.

I have met many children and their families as well. Regardless of where they are, every family has nothing but praise for their healthcare experiences, and the hospital itself. Families travel by plane and train from all over India and in some cases Asia to receive care here. The bulk of their pediatric Hematology/Oncology service is made up of children with Acute Lymphocytic Leukemia (ALL) or Thalassemia. They have had some children with other cancers but they are considered uncommon.

I have been able to talk with many parents and in some cases their children about their experiences in the hospital. Their first response is consistently about how much their healthcare has improved since the introduction of the Play Therapy/Child Life services. Their commentary seems to stem from a place of true gratitude and excitement for the possibilities that come with my time here.

In one case, I talked with a father of a child with Thalassemia for over an hour about the need for more toys and how he could help with that project.  The two women who are currently providing play therapy services have enough toys, primarily puzzles and games, to fill one average double door kitchen cabinet – no play-doh, no video games or Barbies, no beads for necklaces, no toys with lights and sounds or other toys that at one time seemed commonplace to me, but now seem like a bit of an indulgence.  What a challenge to take a game that a child has played over and over again, and make it a new and different experience for them.

I have also seen the unpleasant side of life in India – the extreme poverty, homeless animals eating garbage for food, and filth beyond understanding. I’m not sure what the Indian equivalent of yin and yang is, but it is a palpable experience here.

I find myself tired at the end of the day from the simple mental dexterity that comes with being here and sorting through all the information coming my way – whether it is trying to piece together what someone is saying to me, even in English, as the accent is heavy here or trying to make sense of the cultural context in which things are happening. Despite the, at times, heart-wrenching realities of life here, I look forward to each day with hopeful anticipation.

Jeanine Clapsaddle
Child Life Specialist
Children’s Hospitals and Clinics of Minnesota

Celebrating our heroes – A Hero’s Journey workshops

What’s it like to stay in the hospital for a week? A month? What’s it like to visit the hospital once a week for a year in order to receive treatment? What would it be like to do all of this as a kid?

No matter the duration, no matter the treatment and no matter the age, a prolonged stay, or repeated visits to the hospital take a toll. At Children’s, we wanted to help the kids we serve further process their individual healing journeys, beyond simple follow up visits.

That’s why, in partnership with The Guthrie Theater, Children’s has created a program called A Hero’s Journey. We think of the kids that come to us not just as patients, but as heroes. They are young people who show great courage as they face health challenges and the challenges that come from having their “normal life” interrupted with healthcare visits.

Part of our Arts and Healing initiative, A Hero’s Journey workshops offers Children’s patients a unique opportunity to explore their health care experiences. Kids can let their creative juices flow under the guidance of Guthrie artists and teachers, who will use theatre games, music, storytelling, and movement to explore and affirm each child’s inner strengths – the hero inside each one of them!

A Hero’s Journey workshops are open to children and teens ages 8 to 14. The workshops will be held one Saturday per month starting in March, with two workshops each Saturday (one morning, one afternoon), each 2-1/2 hours long. Patients with chronic conditions, repeated hospitalizations or appointments, and those who have been hospitalized for at least three days are prime candidates. Children may be patients at any of Children’s locations, including outpatient clinics and our main hospitals.

The first A Hero’s Journey workshops will be Saturday, March 24. Families interested in participating can learn more from primary care providers at Children’s or by calling the Child Life Department at 612-813-6259. Children’s and the Guthrie are excited to help patients discover their inner hero!

Changes to Newborn Screening Program will Hurt Kids and Community Health

A recent rulilng by the Minnesota State Supreme Court requires the Minnesota Department of Health to destroy all newborn screening blood samples after 71 days. This is a troubling setback for a program that has succeeded at improving public health and saving the lives of children.

The blood samples will no longer be stored for possible analysis if a child or a sibling develops a health issue beyond those 71 days. They will also not be made available for use in important tests about health problems like immune deficiency disorders or public health dangers.

As a geneticist at Children’s Hospitals and Clinics of Minnesota, I have seen firsthand how the newborn screening program saves lives. Our ability to detect rare and life threatening genetic conditions early on allows us to treat children proactively, in many cases saving their lives and allowing them to grow into healthy kids and adults. Storage of these samples is critical so we can go back when needed to these spots and test issues that emerge later in life or conditions involving relatives.

Here are just a few examples of why the availability of previously collected samples is important:

  • Newborn screening spots may detect patients with rare inborn errors of metabolism. The registry allows physicians to use the blood spots to confirm diagnosis. This confirmation prevents delay of necessary care or repeated unnecessary testing.
  • SIDS is the unexpected, sudden death of a child under the age of one. Typically a medical evaluation does not show an explainable cause of death. The newborn dried blood spot is the only available sample left to grieving parents and physicians striving to understand the cause of SIDS. If a second child in the family is diagnosed with a rare disorder, the family may request the blood spot to understand if the baby who passed away had the same disorder. Similarly, some infants with near SIDS present to an emergency room quite ill. If they are transfused with blood, the only way to get a repeat blood specimen that is untainted with anyone else’s blood products emergently is to obtain the newborn screening card.
  • For a child who has failed the hearing test, it is important to know if they were born with an infection called cytomegalovirus (CMV). In most people, children and adults, CMV causes a cold. It is only if the mother had CMV during pregnancy that the infection may cause congenital hearing loss. When a child has recognized hearing loss within the first year of life, the only way to know definitively if there was a congenital CMV infection would be to check the newborn screening card. Otherwise, it’s impossible to know when the infection occurred, in utero vs. later after the baby was born.

I hope that Minnesota can act quickly to save this program, and retain its leadership in the area of health screening and public health research. At the very least, before we continue destroying potentially valuable blood spots, let’s have a clear discussion about the impact of this action.

Once a blood spot is destroyed, we can never recover the information contained in the sample. We owe it to our kids, their parents and our communities to pause, evaluate, and communicate a clear direction forward that will allow health professionals access to blood spots. I trust that an informed discussion will point us to the right decisions and will allow us to maintain and improve upon this extremely valuable program.

 

Nancy Mendelsohn, MD
Medical Director – Genetics Clinic
Children’s Hospitals and Clinics of Minnesota

Support Children’s and Congenital Heart Defect Awareness Week

Congenital Heart Defect Awareness Week is Feb. 7-14. The purpose of the week is to increase public awareness of childhood heart disease and congenital heart defects (CHD), the latter being one of the most common birth defects, affecting one in every one hundred children.

One of the most difficult aspects of CHD for parents is that often, their children don’t appear sick on the outside, which can be deceiving. This week brings hope to those parents, children and families that suffer from CHD.

At Children’s, we perform the most pediatric cardiac procedures in Minnesota. With more than 10,000 cardiac surgeries performed since the inception of our program, we are the largest cardiovascular program in the Upper Midwest.

Some CHD’s may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last twenty five years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHD’s to survive into adulthood.

This Valentine’s Day, do your part and have a heart. Here’s how you can help:

  • Make a gift to Children’s Hospitals and Clinics of Minnesota’s Cardiovascular Program. Give now.
  • Participate in the HeartBeat 5000 walk/run supporting cardiac care at Children’s. Register or donate now.

Rock the Cradle

At Children’s, we know how important the arts are to kids. What kid doesn’t love to finger paint, sing and make believe? We also believe that experiences like these are essential to the best possible healing journey of a child and family.

At our hospitals and clinics, we have specialists that will visit a child in their room to paint or play music at the bedside. Both our hospitals are full of commissioned art, and we’re adding more all the time. In 2011, we released MN MUSIC 4 MN KIDS, our first-ever music CD, chock full of family-friendly songs from Minnesota musicians.

All of this has a purpose. Research shows that integrating the arts into healthcare supports the physical, mental and emotional recovery of patients. This is something we take to heart. We believe that better journeys mean better outcomes.

In 2012, Children’s is bringing our arts philosophy to the Twin Cities community by sponsoring 89.3 The Current’s Rock the Cradle event on Feb. 26. This free day of music, dancing, art and family fun will be held at the Minneapolis Institute of Arts and Children’s Theatre Company.

Plus, we’ve invited COMPAS, one of our many arts partners, to lead a community art project to help kids and their parents explore the symbolism of the circle. Using colors, shapes and designs, parents and kids are invited to create unique Circle Scape tiles that will be combined to create a large community art piece that will be hung at Children’s – St. Paul. Attendees can also participate in a fun make-and-take Circle Scape activity and bring their art home with them.

We’ll also be selling MN MUSIC 4 MN KIDS for a discounted price. And there’s sure to be sightings of Children’s own Twinkle mascot and The Dude from our in-hospital Kids Clubhouse television program.

So, mark your calendar for Feb. 26 from 11 a.m. to 5 p.m. Rock the Cradle is sure to be a great event for the whole family. For more information, and to see all the activities lined up for the day, visit The Current’s event page.

Here’s to the health of all children.

Preventing infections in pediatric intensive care units

Consumer Reports, is generally known for reviewing shiny new things we all want, like cell phones, TVs and cars. But in their most recent edition, they featured a story about things we cannot see and do not want – blood stream infections in children.

The report reviewed the central line bloodstream infection data from 2010 in pediatric intensive care units (PICU’s) of 92 children’s hospitals around the country and then ranked these hospitals based on their infection rate.

In the report, the PICU at Children’s – St. Paul was one of just five PICU’s reporting zero bloodstream infections in 2010, earning them the highest possible rating. The PICU at Children’s – Minneapolis was one of 29 hospitals who earned the second highest rating because they reported less than half as many blood stream infections as the national average.

Children’s has a track record for this kind of success. From 2006 to 2010, our PICUs combined had a 91 percent reduction in hospital acquired central line bloodstream infections.

Children’s is proud of our PICU staff for being able to accomplish this significant feat. In fact, at this writing, the PICU at Children’s –St. Paul has accomplished 891 days without a central line blood stream infection – that’s over two and a half years! What is fantastic about this is not where we land in the rankings, statistics, or even the accolades that go with this report, but the fact that patients – babies, children and teens – came to us for care and got that without acquiring a devastating, even life-threatening, infection.

We are the first to admit we are not perfect.  Blood stream infections continue to be an issue that demands vigilance.  We strive to replicate the St. Paul PICU success in all of our departments because our patients deserve a safe, healing environment. We know that every statistic on a report represents a child, and a family.  It requires constant attention to provide safe care, especially when it comes to the invisible pathogens that can take a life.

So how are we doing this? Children’s has a culture of patient safety that believes even one hospital acquired infection is unacceptable. Our ultimate goal is to get to zero bloodstream infections and then to stay there. It’s a lofty goal because we live in a world of germs; ICU patients are particularly vulnerable. But, we have already shown we know how to prevent blood stream infections through leadership commitment, bedside staff expertise, constant vigilance, measuring, reporting and by transparently sharing our results.

Our staff who insert central lines go through an insertion checklist based on best practices much like an airline pilot goes through a pre-flight checklist. Our nursing staff maintain the cleanliness of the patient and the central lines 24/7 and continue to expertly manage the care of each child, so not one leaves our hospitals sicker than when they came.

Our rounding teams ask themselves daily if central lines are still needed because, as each day passes, the lines become a greater infection risk. Parents and visitors are taught to properly wash their hands when entering a patient’s room, before and after touching the child, and family members are encouraged to speak up when they have concerns.

To ensure that we continue our transparency, departments such as infection prevention and control, quality, lab, pharmacy and many others work tirelessly behind the scenes to monitor, measure and report our progress – sharing what we know, learning from it and constantly improving.

I’m proud to be part of the team effort at Children’s that allowed us to achieve this remarkable recognition. Together we will continue to work on behalf of our little ones who count on us for only the best care.

Patsy Stinchfield, MS, CPNP
Director
Infection Prevention and Control