Your child needs to be taken to the hospital. As a parent or caregiver, this is one of the scariest moments of your life. The environment itself is overwhelming; bright fluorescent lights shine down into the room and your thoughts are constantly interrupted by the beeping of machines and monitors. Doctors, nurses, and other professionals you haven’t been able to identify yet have been coming in and out of the room, asking questions and using words you don’t understand. Suddenly, remembering simple things, your child’s date of birth or the medications they have been taking seems challenging, even impossible. The doctors tell you that your child needs a procedure; you don’t quite understand what the procedure is and now they’ve asked you to sign an authorization form. A pen is thrust in your hand and you’ve barely read a word on the page. Your child looks to you for reassurance; an explanation. You reach for your child’s hand to give comfort knowing you are the person they trust most, but inside you feel vulnerable (Thompson, R.H. & Stanford, G. 1981). You want to let your child know everything will be O.K., but you don’t have a clear understanding of what is happening. If only there was someone there to help your family to navigate this difficult hospital environment. Just then, there is a knock on the door. Enter the Certified Child Life Specialist (CCLS).
A CCLS is a trained professional with a background in Child Development and expertise in helping children and families overcome the stressors associated with hospitalization and chronic illness. A CCLS provides a range of services to patients and their families to promote effective coping and provide emotional support. The hospital environment can overwhelm children’s natural ability to cope and heal because they are away from family, friends, and their beloved pets and thrust into an unfamiliar environment (Child Life Council 2007). Children in this environment can exhibit feelings of isolation, fear, confusion and loss of control. These emotions can inhibit children’s natural development or negatively impact their physical and emotional health.
A CCLS will assess the stressors that are present in the patient and family, the coping processes they have to handle these stressors, and identify what resources are available that moderate this coping response. The CCLS then presents this information to the medical team to allow them to best treat the patient and family. The way all of these factors work together is depicted as the Stress and Coping Paradigm, a model originally presented by Lazaus that continues to shape the way we explore the human coping process (Weiner & Freedheim, 2003; See Figure 1.1). The concept of this Stress and Coping Paradigm can sound complicated. So we need to break it down. What do all of those words mean? What does that process look like? Let’s take a look.
I am called to the room of an 8 year old patient in the Emergency Department who the medical team has decided needs to be admitted for further testing. As I walk up to the door, there is a group of doctors standing outside of the patient’s room. They are throwing around words like clotting, hematologist, and factor 8. I note those in the back of my mind as I briskly rub hand sanitizer onto my hands. I quickly close the door to avoid the patient’s family hearing a mixture of words that may cause misinformation. I introduce myself to a young girl Molly* who is 8 years old, but her wide eyes and firm clutch on her teddy bear make her appear closer to 6. Molly looks nervous, almost tearful. Her mother sits next to her with an uncomfortable smile plastered on her face. I can tell she is overwhelmed but doing her best to put on a strong front for her daughter. I explain my job as a child life specialist, likening it to a teacher in the hospital. I ask Molly what the name of her teddy bear is. This is the first time I see her grip loosen and muscles relax. “Teddy” is her best friend and she explains she has had him “forever,” since she was 5. I ask Molly if she has any siblings. She quickly tells me all about how she is a “super big sister” to her 4 year old brother Max. I file the phrase ‘Max, 4 year old, sibling book’ into my mental to do list for later. I then explain to Molly that sometimes, the doctors need kids to sleep over in the hospital so they can do some tests and see what is going on inside their bodies. Molly’s eyes grew wide. I explain that we would need her to sleepover in the hospital tonight. She starts to cry and says, “I’m scared!” I validate her emotions and tell her that it is okay to be scared, because this is all new to her, but that we would help to make her and Teddy feel comfy in their room. Molly sat quietly for a moment and then began to ask a lot of questions about the tests the doctors needed to run: why they were doing them and if the tests would make her get better. She said she heard the doctor talk about her blood. I file, “information seeking” and “problem-solving focus” into my mind for my chart note later. I address each of these questions with Molly, explaining that we were going to test her blood and that would help us know what her body needs to get better. Mom seems to have started to process the information and pulls me aside. She explains to me that she is a single mom, but has a sister that lives nearby. She could ask her sister to get Max from preschool, but she hasn’t stocked up on groceries. Mom mentions things have been tough on them financially and she just wasn’t prepared for this trip today. She feels overwhelmed and doesn’t know what to say to Molly; she knows Molly must be so scared. I provide Mom with emotional support and explain the importance of focusing on Molly right now. Her sister can care of Max, in the short term, and I would see what I could do to help her with parking costs while she is here. This helped to calm Mom a bit. I asked if there were other family members close enough to come to be with her. Mom said she would reach out to her parents.
Molly’s nurse pokes her head in the door; I saw an IV tray in her right hand. I ask her to wait for a few minutes so I can provide Molly with a preparation session. With a smile and a soft tone, I look to Molly and say “I am going to teach you about an IV straw. Have you ever heard of one before? Do you think we could practice giving Teddy an IV straw?” Molly said, “I love playing doctor, I want to help!” I can tell Molly will actively engage with me in the preparation session and I pull out the medical equipment we will need. Mom appears a little nervous as she sees I have a real IV and needle with me. Mom starts to try to explain to Molly that sometimes she gets her blood taken at the doctor, but I can see she is struggling to find the right words and begins to tear up. In a gentle manner I remind Mom, “I am Molly’s teacher while she is here. A Child Life Specialist makes sure there are no surprises for Molly and gives Molly a chance to learn about everything in a way that she can understand. I can find the words to teach her, and your job will be providing her additional comfort with your hand to hold or your lap to sit on.” Mom nodded and sat back to watch Molly participate in the first of many medical play sessions she would have with me in the months to come.
This brief patient interaction provided me with enough information to assess the stress and coping that are present in Molly’s family (Weiner & Freedheim, 2003; See Figure 1.2). The major life event currently causing the family stress is Molly needing to be admitted to the hospital. This is going to have a direct impact on all of the members of the family. Additionally, Mom may be concerned about what the blood tests are going to find, clinically put, Molly’s “unknown diagnosis.” The coping processes in the family are easy to observe once Molly begins to ask her questions. As an 8 year old, she wants to know why the doctors are doing the tests and if they are going to help her. Molly has a problem-solving focus. She wants to gather all of the information she can to help solve the problem. Her mother, however, is caught up in her emotional response to the situation. She has an emotion- management focus as she tries to adapt her response to Molly’s admission to best support her family. Then, I assess what coping resources/moderators exist in this family system. Mom is a single mother, which greatly impacts the family dynamic. She references financial difficulties, which speak to her family’s socioeconomic status. She can call upon her sister, who I identify as the family’s most immediate source of social support. These factors and characteristics of this specific family all contribute to how Molly’s admission will go. In addition, the family’s stressors and supports will all contribute to the family’s “outcome.” The outcome can include Molly’s health, the family’s quality of life and reaction to the hospital stay, or it can be an adaptation that needs to be made. After working with Molly’s family, I approach the medical team. I explain that Molly is a bright 8 year old, who responds well to concrete information and preparation. I have assessed that Mom is feeling a bit overwhelmed and any diagnostic information that needs to be presented should wait until Molly’s grandparents arrive to provide some support. As the family’s CCLS, I will continue to provide support to them through each step of their hospital journey. My job description will change with each new experience as Molly may be in the hospital for some time so I will tailor the services I provide to her family accordingly.
Over the next 6 months, this article will break down the role of a CCLS and the resources available to you- patients and families navigating the hospital environment. This article will utilize case studies from work completed with patients and families, as well as explore a child’s development (Thompson, R.H. & Stanford, G., 1981) to provide an in depth exploration of the hospital environment. Through this article, parents and caregivers will learn to identify the reactions to hospitalization that can be expected from a child at each developmental age, the importance of language, procedural preparation and education, and types of medical and expressive play provided by a CCLS, among other topics.