Children Are Listening: Communicating About Healthcare

There are so many aspects about communication that can effect how children cope with healthcare or life's challenges. This blog post will touch upon a few key aspects about communication and provide helpful suggestions as you communicate to children about medical care and challenging situations. Certified child life specialists are trained professionals who are skilled in providing psychological preparations in a way that is honest, simple, clear, and relatable. These professionals use evidenced based approaches to provide developmentally appropriate information that foster an increased understanding, control, trust, expression, self confidence and ultimately, success in getting through hard things.

Unspoken words:

These words are loud and can lead to unintended consequences which set the stage for maladaptive coping. Those words that are unspoken or spoken to others but not intended for the child's ears, are definitely heard and absorbed. Without a single spoken word, children gather information from the behaviors of those around them, the emotions that fill the room, the changes in the environment and routines, and the sensory impacts on their own body. Not "sharing information" or preparing a child for what to expect, with honesty and the tools to cope, can lead to a cycle of distrust with parents and healthcare providers. This often leads to increased fear, lack of self confidence, diminished trust, and maladaptive coping responses, like uncooperative behaviors, which is the exact opposite of what we intend as parents and professionals.

Beware of the avoidance trap!

The basis for avoiding verbal communication is often rooted in a fear of the child's reaction, a belief that a child won't understand, a belief that the child can't cope, a personal lack of confidence in how to share the information, or a personal history linked with avoidant mechanisms for coping. It's common to hear versions of the following statements, "he freaked out and last time we needed 3 people to hold him down" and for the next event, respond with "now I don't tell him anything" or "I told him we were going to get ice cream just to get him in the car." It is common for parents and professionals to avoid preparing a child altogether, use words that are misleading, or even use words that are completely false in hopes for a calm and cooperative child. This is rarely the end result and still, parents and professionals get stuck in this trap.

As a healthcare professional who has worked with hundreds of families and many healthcare teams, I empathize with you here. It is daunting and scary to support a child who you know will react by trying to flee or fight their way out of the situation. I have seen the gamut of tricks, coercion, and physical restraints. It is tough for anyone, especially a parent, to share information that is linked to possible fear, pain, and grief. As a child life specialists, we are trained to help parents, other healthcare professionals, and children turn this pattern around. Our goal is to help children develop the skills to advocate for their needs, feel confident and in control, and to be an active and collaborative team member in their own healthcare journey.

"An avoidance to prepare can lead to an avoidance to seek care." - Raye Pietruszka

Unintended consequences:

• Increased Fear & Anxiety - When painful events and circumstances are unpredictable, a child's sense of safety is threatened and fight or flight mode switches to high gear. Imaginations lock in on worse case scenarios and misconceptions form. When adequate preparation is avoided, a child is not provided with essential tools to cope with the challenging task.

• Mistrust - We all know that avoiding the truth can break trust. Catching a child off guard or by surprise is the extreme. In addition, when parents or professionals "qauntify" pain and this does not match up with the child's experience (which is often the case), trust is lost. Read on for more information on how to prepare and avoid mistrust.

  
  

• Loss of Control - Illness and healthcare is naturally marked with a loss of control where children face tests, procedures, and surgery, with all of the adults around them making the decisions. It is essential to maximize the aspects that we can control by arming children with key information and choices, choices, choices!

• Loss of Self-Confidence - Avoiding preparation strips a child of the tools they need to succeed. Feelings of failure and guilt are internalized. This is often exacerbated as parents and professionals build in rewards in a way that can set the child up for failure. For example, I have commonly heard from professionals and parents a version of, "if you're still and you don't cry, I (or your Mom) will go get you ice cream." Instead, "you're only job is to try your best to hold still and when it's time to leave we will go straight to get ice cream". Providers should never offer rewards on behalf of the parent. This can set the parent up for failure and break their trust with you as the provider.

  
  

• Behavioral Regression - Regression is a common "side effect" for children who have repeated experiences where routines are effected, loss of control and unpredictability seem to be the new norm, and a sense of physical and emotional safety is compromised.

How do we JUMP over THE AVOIDANCE TRAP?

It's crucial to provide information in an honest and simple way to build trust, clarify misconceptions, minimize unknowns, ease fears and anxiety, establish healthy coping plans, and this is key...debrief to find ways to improve next time.

Timing / Ages and Stages

The timing of when we prepare and share information is related to a child's development, their understanding of their body, and the world around them. Please consider that children between the ages of birth to 3 years have the greatest growth period and they are the most at risk for negative impacts related to healthcare. Below is a general guideline however, parents, you know your child best. Read through as information in other stages will be helpful to consider as well.

Birth - 15 months: Prepare in the moment and just before

Just as it is recommended to start reading and talking to children to set the foundations for cognitive and language development, I encourage parents to starting preparing newborns for healthcare related events at birth. This helps parents set the foundations for healthy communication about healthcare events from the start. This age group is all about making sure their basic needs are met (keep me fed, let me sleep, keep me clean, make sure I'm safe, and help me feel secure).

Tips:

• Talk and explain like you would anything else but keep it very simple. Use only a few words to explain the sensory experience as it's about to happen.

• Use swaddles, comfort positions, pacifier, and comfort items. Engage with eye contact, facial games, and singing.

• Fight the urge to give infants and toddlers a screen and instead use board books, push button sound books, rattles, and small cause and effect toys.

• If the infant is upset, not engaging, and overwhelmed, stop using toys, encourage one voice in the room and only the caregivers face to soothe the baby. Stand up and sway immediately after the procedure, if possible.

• Breast feeding or Skin-to-Skin care are interventions that can help minimize pain and stress during vaccinations, heel sticks and injections. Start at least 2 minutes before, continue throughout, and after.

Use Comfort Positions to Reduce Stress

15 months - 3 years: Prepare the day of or the day before

This age group is beginning to understand how their own actions impact the world around them and they are demanding to do things on their own. They move from putting two words together to full conversations and their understanding should not be underestimated.

Tips:

• Use a stuffed animal, a doctor play kit, a play item for alternative focus, and other relatable items to prepare your child.

• Word examples for a vaccine preparation: "Bear needs to visit the doctor. He needs a vaccine to protect him from a strong sickness. Bear's job is to hold still. Let's give Bear a hug to help him with his job." Play through each step: 1) Alcohol wipe "it feels cold and wet" 2) Vaccine "it feels like a poke or a scratch and you can blow this pinwheel to help the poke feeling go away." 3) Bandaid "a sticky cover and all done".

• After preparing, let the child control the play. Let them know, "after snack we will go to the doctor for your turn to get a vaccine like Bear." Choose a coping plan and practice with child (ie: watching or looking at something else, counting, breathing games, and comfort positions).

3 - 6 years: Prepare 1 - 3 days in advance

Children in this age group are magical thinkers and master puppeteers! They are learning about the world around them with questions of who, where, what, why, and how by setting the stage, controlling the characters and the story line. Use imaginary play to your benefit to help prepare your child, develop coping strategies, and encourage active participation in their own healthcare journeys.

Tips:

• Use analogies to help explain. For example, "A vaccine is like a cape or a shield, it protects our bodies from strong sicknesses."

• Word examples to explain vaccines: "The doctor helps us keep our body healthy and strong while our body grows and changes. We need different medicines called vaccines to protect us from big sicknesses."

• Avoid using "bad" or "good" in your language around healthcare. It is common for this age group to believe they did something wrong to cause an illness, the need for medical care, or traumatic events.

6 - 12 years: Prepare at least a few days in advance or as providers share information

Children of this age become more knowledgeable about body systems and the implications of illness, disease, and injuries. They have big concerns about how these things effect their own bodies and their abilities. They are focused on being successful and feeling a sense of accomplishment in their abilities.

Tips:

• Use similar previous successes as a base for getting through new challenges. Highlight their strengths related to skills needed to accomplish the task ahead.

• Open the discussion for questions and help find the answers. Acknowledge you might not know the answer and provide reassurance by saying, "let's write that down so we don't forget to ask the doctor." Be sure to follow up!

• Bring this age group into the discussion. Make eye contact with the child / patient, ask them direct questions and share information in a way they can understand, and encourage their input (to share their own history, to ask their own questions, to share their own worries, and to share their own ideas of what can help make things easier).

  
  

12 years and older: As providers share information

This age group is preparing to go it alone as they push for their own independence, take on greater responsibilities and gear up for living on their own. In some states in the US, children as young as 15 years old are expected to manage their own electronic health records without a parent's access. Children in this age group should be involved and included in the care team decision making process.

Tips:

• Healthcare discussions should be teen patient and provider focused with direct questions and information shared between healthcare staff and patient. Before appointments, parents can ask "What questions do you think the nurse / doctor will ask?", "What questions do you have for the nurse / doctor?", "What coping plan do you want to discuss with the nurse / doctor so they know how to help make this easier for you?"

• Protect sense of independence, privacy and control. Allow teens to make most decisions (on the schedule, who is in the room, and choices in care).

General Tips for All Ages:

• First and foremost, make sure you gather information so you know what to expect. Ask tons of questions (no question is wrong in any way).

• Take care of your own emotional needs so you can remain calm. Infants, toddlers, school age children, and even many teens want their primary caregiver present - if you can't be present, this is ok, plan ahead to bring another trusted adult.

• For vaccines, blood tests, and needle related events - avoid using the words "shot" or "it's like a bee sting". You can say "vaccine", "a poke, a scratch", "medicine under the skin" so they can begin to understand and differentiate. "Shot" and the word "medicine" alone can be confusing and lead to misconceptions. Most kids fear bee stings, have negative associations / experiences, and those with allergies definitely don't want to hear this association.

• In simple words, share what they will see, hear, taste, feel, and smell.

• Allow children to watch if they want - this gives a child a sense of control. "Watching is ok if you are showing us that your body is real still."

• Avoid using medical care as a way to discipline children. Healthcare is not a punishment. Doctors & nurses are safe people and "community helpers".

• Give praise by identifying helpful actions early on, before the event. For example, "great job sitting in my lap", "you're holding still right now, we'll need to do that again later", "great job on your presentation in school, you'll need to be the one talking mostly with the nurses and doctors today".

• "Brave" means they are doing their best to get through something hard. When the word brave is used to say "be tough", children feel shame and lack of confidence. Redirect to coping strategies and focus on strengths.

• Validate pain. Never say it won't hurt. Crying is ok. Keep the following quote in the back of your mind, always.

  
  

Pain is "whatever the experiencing person says it is, existing whenever and wherever the person says it does." - Margo McCaffery, RN, and pioneering pain specialist