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It's "Child's Play"

Monica Horn, RN, CCRN, CCTC

Sally Baker, M. Ed, CCLS
Children's Hospital Los Angeles
Los Angeles, CA, USA

links imageChildren express themselves through play. Pediatric healthcare professionals know that, but how do we help decrease fear and ease the pain of the technologically advanced therapies (mechanical assist devices/VADs and heart transplantation) we currently have available to treat all ages of children dying of advanced heart failure?

Although the concept of Child Life (CL) has existed for decades, healthcare facilities' perceptions may have been that they were not able to budget yet another service. Presently, this service is considered a vital part of the multidisciplinary care model. In the midst of a potentially devastating part of a child and family's life, in steps the CL specialist, not only to promote emotional stability and healthy growth and development for this child, but also to teach their valuable techniques to the family and staff.

A (CCLS) Certified Child Life Specialist's aim is to decrease the stresses and anxieties related to hospitalizations for both the patients and their families. In order to do this, the top priorities are building rapport in a non-threatening manner and familiarizing them with the environment and equipment. In practice, playing with the various types of medical equipment that the patients will be exposed to, achieves these goals best.

links imageFor this patient population, dolls equipped with their own VAD devices allow patients and families to explore the new equipment on their own terms. Once the device is implanted, the role shifts to supporting the patient and family through the daily dressing changes and the emotions involved with this new life style. This new way of living can be especially challenging due to pain, fear of the unknown, anxiety for a variety of reasons and the loss of independence that was previously gained.

For the young/infant population, the CCLS works with the parents/caregivers to model and guide them on how best to support their child through frequent procedures (i.e. dressing changes) including how to handle the stresses of dependence on a machine. One goal for the mechanical device patient is to get them to a point of not needing sedation medications for the frequent dressing changes. This has been an achievable goal for all patients at our institution thus far. Patients have been able to be distracted and supported using developmentally appropriate toys, iPads, music, positive touch, and various other coping tools, as well as providing thorough preparation prior to the initial dressing change. Each child copes in his/her own way and their lead is followed by the CCLS in order to use their preferred coping method, while advocating for this with the medical team and family.

Another tough goal to accomplish during this time is continuing to meet developmental milestones. Child Life works to achieve these goals by providing developmentally appropriate toys that would be found in their normal environments, providing individual play sessions, etc. An example of this is collaboration with the transplant team, infection control, and nursing teams to allow a patient with cumbersome equipment to go to the hospital playroom. This can be a time of fun, developmental growth, and exploring - all age and developmentally appropriate activities for a two year old. For adolescent patients, the developmental milestones are more social and can be difficult to accomplish due to precautions for infectious disease exposure for the waitlisted patient who could get an organ donor offer any moment.

Again, through advocating and collaborating with the teams and the modern marvels of technology and social media, we are usually able to help promote socialization and normalization as much as possible from the confines of the hospital setting using technology. With adolescents especially, the emotional component to coping can be the hardest for staff and family to understand and be able to help because it's the thing one can't easily see. Providing outlets and opportunities for self-expression can be the key to supporting this population through the long hospitalization and the entire process of transplantation. There are many various aspects of the waiting process for patients on the mechanical devices that go far beyond the actual medical equipment. We may find ourselves in this grey area that can sometimes easily get overlooked. The CCLS must strive to find how to best allow patients and families to cope, in order to prevent regression and provide an avenue to have their thoughts, emotions, wants, and needs advocated for and conveyed to the medical team. Facilitating this communication is so integral to them.

links imageEach multidisciplinary team member has a share of responsibility to ensure each patient the intent of improved quality of life. From the talented surgeon who performs delicate anatomical repairs on tiny hearts, to the nursing staff and others who must not only understand the science, but also facilitate the application and humanize the care delivery, the CLS guides a transformation from emotionally traumatized infants or children to healthier well-adjusted kids. An enormous task, even for such competent professionals, this role is a vital component of successful pediatric heart failure support and transplantation.

In the past, some transplant coordinators may have enviously joked that if they had been aware of the Child Life discipline before entering the nursing field, they would have taken that career pathway instead…so they could "play with kids all day." In all sincerity, however, creating a child-friendly environment is a priority for pediatric healthcare facilities. Child Life Specialists decrease the fear and pain of a child during a lengthy hospitalization while educating the family and staff how to do this, as well.

GOAL: Let's ALL go home and PLAY! ■

Disclosure Statement: The author has no conflicts of interest to disclose.

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