Supporting Health Care Self-Advocacy in Children, and Advocating on Their Behalf
Author: Rachel Westlake, BCPA
Editors: Lauren Wheeler, MD, BCPA, Surabhi Dangi-Garimella, Ph.D.
Purpose of this guidance: This resource aims to empower young patients and their supportive parents, caregivers, and advocates. It encourages them to take active roles in the health care decision-making process and include children. How to include children varies based on the situation, diagnosis, and their age. This is a simple guide that should be adapted for the developmental stage of the child.
A child-centric approach encourages children to understand and contribute to their health care. Nurturing a child's sense of agency and health literacy, encouraging them to ask questions, express their feelings, and understand their medications and treatment plans will help children learn and feel more comfortable in health care situations. This resource supports the development of self-advocacy skills and self-efficacy, enhancing a child’s ability to cope with, understand, and build skills from health care experiences.
Negative health care experiences can be traumatic for a child (and for adults). However, knowledge and understanding of what’s happening in their health care allows them to feel emotionally safe in medical settings, and they are less likely to have traumatic experiences.
Self-advocacy is a skill that requires practice and cultivation. For you and the children you support, success may not be immediate—but practicing to make care patient- and child-centered is worth the dedication!
Preparing for appointments
- Write down your and the child’s goals and questions ahead of time.
- Bring pertinent information to appointments, like health history, current medications, and information about other care team members.
- Prepare the child for their appointment: let them know they will have time to ask questions and tell them what to expect and what you don’t know. Help them practice speaking with the health care professional.
Preparing for elective surgery
- At the appointment before the child’s surgery, ask questions about potential complications and the options for responding to them.
- On the day of the surgery, make sure those responsible for the child’s care in pre-op (the time before your surgery, it may also be a specific place) know exactly what part of the body is getting surgery, and that it is marked while you are there.
Consider the style of the pediatric medical professionals
- Seek doctors and teams who encourage communication, those professionals who ask open-ended questions, and who care if the child understands.
- Ask about the availability of child life specialists. They can help children understand what’s happening with their health and care.
- Remember, things are often moving more quickly than necessary. You usually have the time (and the right) to get a second opinion or ask more questions.
- Build relationships — once you’ve chosen to work with someone, remember that health care professionals want to have a good appointment and a good day, too. Communicate kindly with the supportive team working to help the child.
- Medical professionals may be busy, but everyone has time to be kind and thorough in a medical setting. If you or the child aren’t treated with the kindness, sensitivity, dignity, or trauma-informed care you need, advocate for yourself and your loved one.
- If a team member isn’t a good fit for you or a child, make a change if possible.
Know the medications and treatment plan well
- To the degree they are interested, help kids understand their medications. Knowing about medicines can support good medication behavior and better health. Pediatric pharmacists are a great resource. See our pages on pediatric medication.
- When kids are in the hospital, help them understand the medications being given, as appropriate, and allow them to ask questions to their medical team about those medicines when they are administered (given). This helps those that give these medicines an opportunity to double-check. If you can’t be there, the child asking about medicines can be a great safety protocol.
- Let them identify and label the treatment and medicine as it makes sense to them. Let them label their stomach medication with hearts and stomach stickers, for example.
Model and encourage self-advocacy
- Encourage questions about their health and health care at home or in medical settings.
- Encourage self-advocacy in non medical settings. Asking for help at a store or at school will help them build their self-advocacy skills and feelings of agency, which will be helpful in health care.
- Make sure the child knows that they are a very important part of their health care team. Reinforce the idea that their input matters and that doctors, nurses, and parents are all working together for their health.
- Teach the child correct terminology for their body parts, symptoms, and medications. This helps them accurately express what they're feeling and discuss their needs.
- If the child has a chronic illness or serious health issue, take time to explain what it means in an age-appropriate manner. Understanding their condition will enable them to engage in meaningful discussions with health care professionals.
- Help them learn how to make decisions about their health. Start simple, like talking about how to consider if they are feeling tired and making the decision to rest. Supporters can assist with more significant decisions as they grow older.
- Ask their opinion about how an appointment went to encourage reflection and assessment.
- Help them practice scenarios at appointments or ahead of time. They can practice checking themselves in at a desk or telling their doctor how they are feeling.
- Share stories of when you or other children have effectively advocated for themselves. This will encourage them to be advocates, too.
- Remind the child that it's okay to express when something doesn't feel right and to ask for help when needed.
As we navigate health care with children, nurturing their self-advocacy skills has many benefits. This process, geared to the child's level of development, empowers them, improves their health literacy, and can positively affect health outcomes. The tools we've discussed — active participation, encouraging questions, understanding medications, and more — are all pieces of a puzzle that create health care where children have more opportunity to feel acknowledged, respected, confident, and capable. We support better current health care experiences and lay the groundwork for their future health resilience. We can support children to not just be patients but active, informed participants in their health care and life.
Pediatric Health Care Advocates with free resources or services:
Understanding medications for parents and caregivers: https://kidshealth.org/en/parents/medication-safety.html
Talking to kids about medication: https://childmind.org/article/talking-to-kids-about-medication/
Preparing kids for medical appointments: https://kidshealth.org/en/parents/dr-visits.html
- Appointment prep with some tools for kids: https://fit.sanfordhealth.org/blog/everything-you-need-to-prepare-your-child-for-their-doctor-visit
Age-appropriate appointment support: https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/helping-children-cope
Preparing for a medical procedure: https://www.childrensmn.org/educationmaterials/childrensmn/article/16065/helping-children-cope-with-medical-procedures/
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License (CC-BY-SA-4.0), available at https://creativecommons.org/licenses/by-sa/4.0/. SPDX-License-Identifier: CC-BY-SA-4.0
Signed-off-by: Rachel Westlake