Bright lights, lots of people, big and unfamiliar words – add the poking and prodding and kids can quickly become overwhelmed in the hospital or doctor’s office. Encouraging children to speak up for what they need to feel safe in a stressful situation can give them a sense of control and confidence when they need it most.

Our child life specialists empower kids to do this every day. It’s a large part of how they support their patients and families in preparing for and coping with medical experiences.

Certified Child Life Specialist Siri Garrett answers 5 questions about encouraging self-advocacy and why it’s so important for kids in the health care setting

Why is self-advocacy important for kids when it comes to their medical care?

Specifically in a health care setting, encouraging self-advocacy ensures that children feel heard, gives them a sense of agency and control, and helps them feel involved in their treatment. When kids are encouraged to ask questions, share how they’re feeling and take an active part in their care, they can develop more trust that their health care team truly has their best interests at heart. Self-advocacy also empowers kids to have a stronger sense of confidence in their own ability to impact their care and well-being.

Understanding that every child is different, at what age would you recommend starting to work on self-advocacy?

You can start giving little ones choices as early as infancy. Hold up two books and ask, "Which book should we read first?" Follow the infant's gaze/reaction and respond positively about their "choice."

By toddlerhood children certainly can be given simple, age-appropriate choices in the health care setting, such as:

• Would you like me to put the blood pressure cuff on your arm or your leg?
• Do you want me to give you your medicine, or do you want your nurse to give it to you?

The process of offering children practical choices, providing clear and honest explanations of their options, following through on what they choose and providing positive feedback when they do participate in their care begins building a strong foundation of self-awareness and self-confidence.

By 7 or 8 years of age, most children are willing and able to practice self-advocacy, such as answering some of the provider's questions, sharing what worked well for them during their last lab draw, etc. 

Are there certain health procedures, settings or situations where you find self-advocacy to be especially important?

Any situation in which your child may experience fear, pain or discomfort to their body would be worth encouraging self-advocacy. I often remind kids when I’m preparing them for a part of their hospitalization that they’re in charge of their body and emotions. Whatever they need to have done is being done FOR them to help them, but I acknowledge that it's happening to THEIR body. They know their body the best so we want to hear what they need. 

• During medical procedures, encourage your child to express what specifically they’re nervous about and what they can think of that would help them feel braver, calmer or safer.
• Let them know it’s okay to take a small break during an appointment or treatment if they’re feeling overwhelmed.
• During development of treatment plans, involve them in discussions around how they feel their treatment plan is/isn't working or how the side effects may be affecting their daily life.
• If they have a chronic condition, encourage them to learn about their diagnosis, symptoms and treatment so they’re able to best advocate for themselves in medical, school and social situations.

How can parents and caregivers help develop self-advocacy skills in their kids?

• Encourage questions, allowing them space and time to speak up. If they ask a question you don’t know the answer to, be open about not knowing and offer to find the answer together.
• Role play scenarios where they can have a chance to practice what they might say or how they may share their thoughts. Stuffed animals or toys can be used to act out common situations where your child may have an opportunity to speak up for themselves. They can be used to model how they’re feeling and what could help them. For example, a toy could tell another toy, “I feel scared that going to the doctor is going to hurt. I’d like to hold someone’s hand to feel brave.”
• Provide choices as much as possible. Their situation may be out of their control, but there are many aspects to their hospital experience where they can be empowered to make decisions.
• Help them recognize and identify their own emotions so they have the vocabulary and understanding they need for success. Again, this is an opportunity where role playing, reading books or watching videos about emotions can help children develop their knowledge and vocabulary to identify how they’re feeling in situations. With younger children, it may be helpful to work with them on describing how, or where, they’re feeling their emotion. Are they feeling like they have butterflies in their stomach? They may be feeling nervous or uncertain. Are they feeling a tightness in their chest or head? It may be anger or frustration.
• Gradually let them increase responsibility and agency while remaining a source of trust and comfort.
• Model self-advocacy, either in person or through discussions about ways you’ve successfully advocated for yourself, how it impacted your experience and how it made you feel. 
• Teach them the power of assertive communication by practicing with them how to speak clearly, respectfully and confidently. Encourage “I” statements such as, “I don’t understand, can you explain it again,” or “I need a break.”
• Help your child develop comfort plans (ask your child life specialist if you want some ideas or assistance!) for when they feel anxious or are going to experience something they know is stressful, such as getting an IV or having their port accessed. Encourage your child to share this plan with their medical team. Remind them that sometimes plans can change. For example, your child identified that they want to listen to their favorite song on an iPad during their IV but the iPad isn’t working. Practice some basic coping exercises that they can use. (Can you sing the song together? Tell silly family stories?)
• Remember to follow your child’s lead. There may be times they will need you to advocate for them, especially if they’re just not feeling well enough. Or they may feel shy speaking to new team members, but still know what they want. This could be where they tell you what they need, and have you share with the team. The more opportunities your child has to recognize the power of their own voice, the more their team will collaborate with you and your child and the more confidence your child will have in themselves.

Is there anything you’d suggest NOT doing when it comes to supporting children advocating for themselves?

It’s human nature to want to make situations seem less difficult or scary, especially for kids! At the same time, we want to be honest with them when they have concerns. Rather than saying, “There’s nothing to be scared of,” let them know it’s normal to feel worried and ask if there’s something specific that’s making them nervous.

While you likely know your child’s needs and desires, allowing them to share their thoughts before stepping up to speak for them – especially as they get older – can help them in the moment, while also building skills for the future.

Meet our child life team and see all the support they provide for kids and families at CHoR.