A common challenge experienced by many child life specialists (CCLS) occurs if a family does not want their child to receive information regarding their hospitalization. Whether it be a blood draw, a surgery, or any other type of medical experience, it is very common for families to want to shy away from telling their child what is coming up next. This desire to protect your child from any potentially frightening information is entirely natural and one that any CCLS will understand. However, our experience leads us to recommend that when children receive information about what they will experience ahead of time, it can allow children to process the information, ask questions and clarify any misconceptions that they may have.
Clinically, this facet of the role of a CCLS, is called procedural preparation. A procedural preparation session can take many forms, depending on your child’s age. For example, a 3 year old will benefit from opportunities for medical play while a school aged child may respond better to viewing a preparation book that contains pictures and descriptions of what they will see. Further, an adolescent may require a discussion of the information and an opportunity to speak directly to medical providers.
Procedural preparation includes two components: reviewing the sequential steps and describing the sensory experiences. This is where the liaison role of a CCLS between patients and families and the medical team is very important. A CCLS must ensure that all of the information provided to patients and families is accurate and reflective of the medical team’s plan.
Reviewing the steps of the procedure sequentially allows children to learn how many pieces there are to each procedure and to always know what happens next. A CCLS works to make sure there are “no surprises” for children during procedures. This means the child must always know what is coming next and the order of these steps is not altered by medical staff. If a change must take place, a CCLS will explain the reasoning to the child.
Knowing what the next step is opens the child up to receive information regarding the sensory experiences. If the child knows that step 1 is to use an alcohol wipe to clean their hand, a CCLS will ensure the child knows that means their hand will be wet and cold. This helps children to associate the steps to a feeling. Children have heightened senses compared to those of adults. It is important for children to know what each step will feel like. A CCLS will help to remind staff to avoid saying things like “It’s just a little wet” as to some children it may feel very wet, cold or uncomfortable.
A common question parents or even medical staff ask a CCLS is how to answer the dreaded question, “is it going to hurt?” It is not uncommon for families to interject “no it won’t hurt!” at this point in a preparation session. Telling the truth is essential to children developing trust of not only their parents, but also medical personnel. If a child is receiving a blood draw and they ask if it is going to hurt, a CCLS may respond: “some kids tell me it feels like a small poke, but you can tell me what you think it feels like.” Although children may be nervous about what the procedure may feel like, they tend to cope better when they know what to expect. It is important that medical personnel are not made the “bad guy” by surprising a child with something uncomfortable or painful.
I have met many children who are scared of medical personnel and when I ask them why, the story looks something like this: “they told me it wasn’t going to hurt and it hurt a lot!” or “They lied to me and gave me a shot when they said they weren’t going to!” I always promise children, “there will be no surprises here today” which allows them a sense of control over the experience. If a child knows there will be one, small poke they tend to cope better than surprising them with one. This may lead to problems getting them to the doctor’s office in the future.
Now, there are some children who become anxious after having learned about the procedure they will need to complete or have doubts about being able to complete the experience successfully. A CCLS will then work with that child to develop a coping plan. A coping plan is a plan that gives the child as many choices as possible, while employing coping strategies to help the child to be successful. In my clinic, many of the patients receive an IV straw. The nurses will often ask me, “What’s the plan?” when I complete my preparation session. They are referring to the patient’s individualized coping plan. An example of my response could be “Bobby is going to sit on mom’s lap, he does not want you to count 1-2-3 before the poke, he wants to count to 50 with me and take deep breaths.” This allows the nurse to know what will make Bobby comfortable, gives Bobby some control over the situation and helps Bobby to employ a coping strategy throughout the procedure.
Procedural preparation can also be difficult if the procedure/test the patient will be undergoing is something that is considered painful or invasive. Many families, and even other staff members, have concern about exposing children to potentially frightening information regarding these types of procedures. My work with patients includes preparation and medical play for a test called a Voiding Cystourethrogram (VCUG). This test involves the invasive aspect of a catheter insertion and voiding on an x-ray table. I begin my preparation with a phone call to each patient’s family to explain exactly what the exam will entail and what services I will be able to provide their child throughout the experience.
My phone calls tend to all have a similar theme when talking to parents of children over the age of 2. They tell me: “I don’t want to tell them a thing.” The great thing about a CCLS is, they will tell your child for you! When I talk to families, I provide them with useful scripting to use to provide to their child without needing to divulge too much information that they may be uncomfortable with. For example, “you will be going to the doctor tomorrow for a special test. My friend Teresa will be there to teach you all about it” This allows the child to learn 1. I am going to the doctor’s 2. It’s tomorrow 3. It is for a test so it is something new I have not experienced 4. There is someone there my mommy trusts named Teresa to explain it to me. This dialogue helps to prepare the child to meet and work with me when they arrive to their appointment.
Let’s look at a successful example of how medical play allowed a 6 year old to master the VCUG experience from start to finish:
Jane comes into my clinic, her wide eyes looking around at all of the medical equipment she sees. Quickly her eyes are drawn to the toy area, her gaze locked on an Elsa and Ana Frozen Tea Party Set. I see my “in” with Jane. I begin to talk to her about the movie Frozen, asking her favorite characters and songs. Jane excitedly tells me all about Princess Elsa and shows me her light up Frozen sneakers. When I show her my name badge with an Elsa sticker on it-instant rapport gained with patient.
I begin to segue. I ask Jane if she knows why she is here today. Jane is able to tell me she is having a test and her mommy told her it has to do with her belly. I reinforce her for providing such a smart answer and confirm that what Mommy told her was right, (reinforce trusting relationship) she is here for a test.
I explain that my job at the hospital is to teach her about her appointment today. I take out a doll and a toy doctor’s kit. Jane begins to manipulate the medical equipment, often incorrectly, but I watch her explore what I have brought with me. Slowly, I add real medical equipment to the pile. A piece of medical tape here, alcohol wipes there. Until she begins to use the real equipment.
I tell Jane that “everything I do with the dolly today, we are going to do with you at your doctor’s appointment” Being 6 years old not entirely focused Jane says “will I get a shot?” I use this opportunity to begin the session. I explain how she is here to take pictures of the inside of her belly. I ask if she can see inside of her belly and she tells me no. So we talk about special ways to see that: a big fancy camera. I continue to explain each piece of the exam to Jane, including talking about the “tubie.”
Jane picks up the catheter and feels it. I ask her if it is sharp, she tells me no. I ask her if it looks big or small, she tells me small. I show her where it goes on the baby doll. I explain, that just a little bit of the tubie, needs to go into the dolly where she goes pee pee. Instantly, the adults in the room tend to tense up. However, inquisitive toddlers often find this funny and want to learn more. I show her how to use the tubie, placing the catheter into my anatomically equipped, medical play doll. Jane watches me intently. I ask her if she wants to put it in the dolly as well. To the surprise of her parents, she places the catheter correctly, looking for praise on her great job.
I encourage mom and dad to reward her on her great work. We talk about how she needs to have a tubie in the area where she goes pee pee too so that we can fill up her belly with magic color changing water. This will help us take pictures with our big camera and see what happens inside of her belly. Jane seems to be content with that idea and returns to medical play, taping the dolly on both the catheter and all over her body.
I talk to Jane about things we could do if we thought the tubie part might hurt. We practice taking “birthday candle breaths” blowing out the air in our lungs to relax. We talk about how thinking about some of our favorite things helps us to be calm. I ask Jane if she might want to watch a Frozen video during her special test so she doesn’t have to worry about the tubie. Jane is quite enthusiastic about that idea. Coping plan development has begun.
A test of this “invasive” nature would require a lengthy session, where I would continue to play and review these ideas with Jane. I continued to work with her viewing images of the big special camera and thinking of ideas to add to her plan for the day.
The plan continues to evolve and now includes mommy and daddy standing right next to her and singing “Let it Go” with her. And if we have a hard time with the test, we could talk about silly things to make her laugh. Jane says she gets nervous because the doctors has “so many grown-ups all the time!” I advocate to the medical staff to have the medical students refrain from entering the room during her procedure.
Jane utilizes her plan beautifully. Being 6 years old, she cries during the catheter placement, saying “owie!” and needs a few minutes before she calms down. After this, she returns to watching her Frozen videos. Following the procedure she is proud of her accomplishment, saying “I did it the bravest!” And I agree with Jane, that she certainly did.