“The saving grace for our child life program during COVID has been the enCourage kids grant. It gave us supplies for 5,000 ‘emergency department comfort bags’. These one time use bags contain coloring and developmentally appropriate comfort items for patients that they then take home with them. These supplies provided our child life program with enough single use activities and distractions that we could and continue to be able to safely serve our pediatric patients.”
– Alexa Kreisberg, Director of Child Life – The Brooklyn Hospital Center
Addressing Needs
Every year, enCourage Kids receives $1 million in funding requests from hospitals across the country for specialized projects not covered by their budgets through our Pediatric Hospital Support Program (PHSP).
Focused on enriching care, these projects benefit hundreds of thousands of young patients by helping them cope with illness, alleviating stress, offering distractive therapies, educating on diagnosis, encouraging self-expression, uplifting spirits, promoting physical therapy, and more.
In an ever-changing arena of merging hospital systems and shrinking hospital budgets – plus the challenges hospitals have faced during the pandemic – child life staff have come to rely on PHSP funding to support creative programs and initiatives to meet the psychosocial needs of young patients, many of which would not be funded at all if not for enCourage Kids.
Since 1996, we have funded $16 million for 859 projects.
Our partners have helped to identify four areas of concern they feel they will face in a post-pandemic environment.
Here are examples of how we have previously addressed these needs through PHSP.
Staffing Issues
During the 1990s, when a financial crisis developed, hospital restructuring and cost-containment initiatives reduced the number of child life specialist positions.
When PHSP was launched in 1996, a priority was to help fund these positions as a way to demonstrate to hospital administrators the importance of child life. Our goal was to get these positions back into their budgets.
This funding included part-time child life assistants, child life fellows for outpatient clinics and the ER, and weekend child life programming,
Overall we’ve funded $5.2 million to nearly 50 Hospitals, including our four featured healthcare hero hospitals: Brookdale University Hospital and Medical Center, The Children's Hospital at Montefiore, NYC Health + Hospitals/Elmhurst, and NewYork-Presbyterian Komansky Children's Hospital.
In three hospitals in particular, we funded pilot programs to introduce child life for the very first time: NYC Health + Hospitals/Harlem (established in 2001), Flushing Hospital Medical Center (established in 2008), and Rochester General Hospital (established in 2008).
As hospitals have come to understand the importance of child life services, more have incorporated these positions into their budgets, but they are still in need of our support. We continue to be a vocal advocate for the impact of child life in hospitals and will work hard to show the importance of maintaining and increasing their presence when serving young patients.
Creative Therapy
Music therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals.
Likewise, through integrative methods, art therapy engages the mind, body, and spirit in ways that are distinct from verbal articulation alone.
For these reasons it’s important to integrate creative therapy programs into the services that child life professionals provide their patients.
Overall we have funded nearly $5 million in programs to nearly 60 hospitals.
Some long-term music therapy programs have included therapists at Albany Medical Center, NewYork-Presbyterian/Weill Cornell Medical Center , and an Artist-in-Residence at Children’s Hospital at Montefiore.
Some unique programs have included horticultural therapy at NYC Health + Hospitals/Bellevue, St. Joseph's Children's Hospital, Stony Brook Children's Hospital, Upstate Golisano Children's Hospital, Incarnation Children's Center, and Good Samaritan Hospital Medical Center.
Space Issues
When a child or teen steps into a child-friendly, colorful and inviting room, it changes the way he or she feels about receiving treatments. Fear is replaced with optimism and the treatment experience is improved, which directly benefits the child. A welcoming space can inspire playfulness, confidence, joy, and hope.
To date we have funded over $1.7 million to renovate or transform spaces in 63 hospitals.
Often, space for patients and visitors include age-appropriate diversion activities, creating a familiar environment that supports the psychological and physiological well-being of the children.
Some of the spaces enCourage Kids has funded include enhancements in a pediatric emergency department, a family oasis lounge, renovation of a teen recreation room, creation of an outdoor serenity area for an adolescent psychiatric unit, a mobile treatment room for a PICU and epilepsy monitoring unit, and murals & decorative upgrades for a pediatric lobby.
Emotional Well-Being
Emotional well-being and safety can be addressed in a number of creative ways, and here are a few examples of how enCourage Kids has done so.
Hospital Admission & Comfort Kits are individualized activity packs given to pediatric patients upon arrival to the Emergency Department. These packs prevent boredom during wait times, provide distraction during tests, and can alleviate the anxieties accompanying an emergency trip to the hospital.
Technology programs include inpatient gaming & entertainment systems, tablets for distraction and education, advanced recording technology for music therapy, intra-hospital patient-to-patient TV programming, and mobile treatment units that can travel room to room to soothe and entertain non-mobile patients while undergoing difficult treatments.
Since 2017, enCourage Kids has been funding the monthly support group for children and families at Brookdale University Hospital Medical Center. Within the safety of the support group environment, patients and families can freely express their anger, depression, guilt, and anxiety, and have those feelings validated by others and accepted as a normal response to living with sickle cell or living with someone who has sickle cell.
And in 2018, we funded our very first facility dogs at UCSF Benioff Children's Hospital San Francisco. Facility dogs provide opportunities for happy, memorable moments during what can be a challenging time for pediatric patients and their families. Dogs are often used to lift spirits, lessen depression, provide comfort, and increase socialization for children.
During a visit from a facility dog, patients can break from their hospital routine to experience moments that allow them to disconnect from their sickness and feel secure and hopeful. They can also help motivate kids and make reaching important care goals, like getting out of bed or walking on their own, feel less daunting.
Creative Therapy: Artist in Residence
Children's Hospital at Montefiore (CHAM)
Through music and beatboxing, Duv gently finds his way in to see what will make the kids feel comfortable.
CHAM Prom:
“This kid was having the moment of his life.”
Each hospital’s patient population has different needs.
For the past decade, we have helped reach children and offer culturally-sensitive care at Children’s Hospital at Montefiore (CHAM) through funding of their Artist in Residence program.
Jonathan "Duv" Zaragoza, a beatboxer and songwriter who helps address the specific needs of CHAM’s patient population, has a unique way of connecting with the kids treated at CHAM, especially the teens. Music is his tool and his medicine. He takes an art form familiar to kids and teens served there, and uses it to help them heal.
Through music and beatboxing, he gently finds his way in to see what will make the kids feel comfortable.
“His aura arrives in the room 5 minutes before he does. He is the most gentle, kind, accepting, inclusive person you could ever meet,” shares Meghan Kelly, CHAM’s Child Life Program Director.
Duv’s kind and inclusive demeanor encourages the kids he works with to emote and feel like they have a voice at a time when they have little control in their lives. Utilizing creative tools also helps to reduce their stress and anxiety, and can even improve their pain management through distraction.
This was especially helpful for one long-term sickle cell patient who often gets teased at school because of his condition, causing him to be quiet and closed off.
Duv had been working with him for a long time and was able to help him live out his dream of rapping and beatboxing at the CHAM prom.
“It was like he was having his own concert moment. The entire prom cleared a circle for him and he was singing his song and rapping for them. And they were all like ‘yay’ screaming his name. I thought his smile was going to break his face. This kid was having the moment of his life,” recalls Meghan.
“That never ever would have happened if enCourage Kids didn’t send us a beatboxer that we had asked for.”
“When I read through the proposal and sat down with the board – the question was ‘beatboxing?’. And I knew it would work,” shared Michele Hall-Duncan, our President and CEO. “You just changed one little boy’s life and that may be the night that he remembers forever. The night that he got to fulfill a dream.”
Space Issues: Playroom NYC Health + Hospitals/Elmhurst
The 2020 pandemic is not the first time enCourage Kids came to the aid of Elmhurst Hospital by addressing a specific need. In 2014, the child life staff needed a playroom.
Child life specialists are trained to provide patients with the tools they need to cope during their hospitalization. They utilize toys and creative activities as well as distraction and pain management techniques to help patients cope with the overwhelming atmosphere of the hospital.
For Elmhurst’s one-person child life department, all child life services were limited to the patient’s bedside as there was no alternative space available for the provision of such services. But they did have a sitting/storage room in their Inpatient Pediatric Unit that families were able to utilize if they needed to step away from their room.
With funding through PHSP, this partial storage room was transformed into a beautiful, inviting and calming space where child life services that were critical to the overall emotional and physical healing process could be delivered for patients and families seeking refuge when overcome by the strain of the hospital environment.
Colorless walls were painted blue with an outdoor park scheme complete with trees and flying kites. Sensory equipment featuring a tactile wall, fiberoptic lights, sensory balls and play toys, a colorful floor mat and a fun mirror were installed. The renovation also included the purchase of arts & craft supplies, musical instruments, block sets, a children’s table/chairs set and lounge chairs, and a storage unit to keep supplies safe and accessible.
Studies have shown that providing pediatric patients with an opportunity for socialization and to remove them from the small confines of their room to engage and interact with others in a non-threatening setting can facilitate their expression of the many emotions associated with illness and hospitalization, which can lead to better medical outcomes.
Emotional Well-Being: Sickle Cell Support Group Brookdale University Hospital Medical Center
What is Sickle Cell Disease?
Sickle cell disease (SCD) is a group of inherited conditions that affect hemoglobin, a protein that allows red blood cells (RBC) to carry oxygen to all parts of the body.
Healthy RBC are round, and they move through small blood vessels to carry oxygen to all parts of the body. In SCD, the RBC become hard and sticky and look like a C-shaped farm tool called a “sickle.”
These cells can get stuck in the blood vessels and block the normal flow of oxygen throughout the body. This leads to a variety of health problems. [Source: Sickle Cell Disease in New York]
Major complications are painful crises, serious infection, stroke and damage to body organs.
It is most common among people of African descent. 1 in every 12 African Americans has the trait. 1 in every 400 has sickle cell disease.
It also affects people from Spanish speaking regions (South and Central America, Cuba). 1 in every 100 Hispanics has the trait. 1 in every 1000 Hispanics has sickle cell disease. [Source: Brookdale Comprehensive Pediatric Sickle Cell Program ]
The hope, joy, and support provided to pediatric patients and their families is palpable during every group session and carries on throughout their daily lives.
The community that Brookdale serves is predominantly African-American and the area around them has a high incidence of chronic illnesses, like sickle cell, and a significant number live below the poverty line.
Sickle cell disease is a life-long chronic illness diagnosed at birth and within two weeks patients at Brookdale are enrolled in their comprehensive care program. Comprehensive care gives an opportunity for patients and families to receive care that is patient centered and makes sure all issues that the child and family deal with in reference to the disease and its effects are addressed.
“Life is difficult. Life is stressful. We believe that by providing comprehensive care to these children and families, we want them to feel absolutely at home in this program,” shares Dr. Kusum Viswanathan, Director of Pediatric Hematology/Oncology.
This includes teaching their patients how to speak about the disease so they can become advocates for themselves and helping them when they begin transitioning from pediatric care to adult care and dealing with medical professionals at every level.
The transition process begins when the patient is around 12 years old, and at this point they become involved with the support group.
Since 2017, enCourage Kids has been funding the monthly support group for children and families at Brookdale. Within the safety of the support group environment, patients and families can freely express their anger, depression, guilt, and anxiety, and have those feelings validated by others and accepted as a normal response to living with sickle cell or living with someone who has sickle cell.
The biggest advantage of providing a support group is to help patients and their families realize that they are not alone and that there are other children who have the same chronic illness. The hope, joy, and support provided to pediatric patients and their families is palpable during every group session and carries on throughout their daily lives. They have continued to meet virtually during the pandemic.
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