Key takeaways

  • Parents and caregivers play a crucial role in advocating for their child’s healthcare needs, acting as their voice and actively participating in medical decisions, especially when the child is young or unable to express their choices.
  • Effective advocacy involves clear communication with healthcare professionals, understanding the child’s medical history, building relationships with the healthcare team, and empowering children to participate in their healthcare choices.
  • In challenging situations, parents can escalate concerns through patient advocates or mediation teams, and seeking a second opinion is a valuable tool for ensuring medical accuracy and addressing any doubts about the child’s care.

Advocating for your child’s healthcare is one of the most significant jobs you’ll have as a parent or caregiver. If your child has a complex medical history or a chronic condition, your advocacy is all the more important.

Being an advocate for your child’s health means you act as their voice with doctors and other healthcare professionals, and you are an active participant in healthcare decision making. This is especially important when they are younger or if they are unable to express their choices.

As they age, you remain a crucial ally, supporting their medical decisions and acting as a source of comfort and strength, ensuring that their needs are recognized and met when it comes to their healthcare.

Once they are adults and have full responsibility for their healthcare decisions, your advocacy can serve as an example for them to follow, ensuring they receive the best care possible.

The medical system is not always well-suited to recognize and value a parent’s expertise and input, and this can sometimes make being your child’s advocate stressful. You may have to be more assertive than you are comfortable being. But, like many parenting tasks, advocacy is a skill you can learn.

Read on for more information about how to be an advocate for your child and where to find additional support.

Advocating for your child is an integral part of a collaborative healthcare model, family-and patient-centered care, where parents work closely with healthcare professionals to ensure their child receives the best possible care.

The American Academy of Pediatrics (AAP) explains this model of care as healthcare that is based on mutually beneficial partnerships among patients, families, and healthcare professionals.

One of the lynchpins of this style of care is parent participation – advocacy – that creates a shared decision making process between the family and healthcare professionals. Research suggests this approach to healthcare may lead to better outcomes for the children involved.

For some people, being an assertive advocate for their child comes naturally, but for many, it is an intimidating prospect. Much like riding a bike or baking bread, advocacy is a skill you can learn.

Here are a few key ways to advocate for your child in healthcare settings:

Communicate clearly and assertively

Here are a few tips for effective communication with healthcare professionals:

  • Prepare before medical appointments: Write down observations you have about your child’s health and questions you have, so you don’t forget during the appointment.
  • Share specifics about your child’s health: Tell the doctor things like improvements, new or changing symptoms, response to treatment – what’s working and what isn’t, and any other concerns you have.
  • Ask for clarification: If you don’t understand something, ask questions. If age-appropriate, ask for explanations in terms your child can understand as well.
  • If your child is in the hospital, ask to be included in daily care decisions and rounds: Rounds are meetings of your child’s healthcare team. They are important ways the team stays on the same page, implements treatment plans, and revises the care plan when necessary.
  • Respectfully escalate the situation if you feel that your concerns aren’t being addressed:This can be an awkward or stressful encounter, or it can be an opportunity to build relationships. You can escalate by asking to speak with a patient advocate, speaking with nursing staff, or reaching out to the directors of care for the department or area that is providing care for your child and expressing your concerns with respect and honesty.

Keep good records

Keep your own copies of your child’s medical records. Here are some additional things to do so you always have access to your child’s complete medical history.

  • Take notes: In addition to keeping copies of medical records and test results, it’s a good idea to keep notes of what happens during medical appointments and other communications you have with your child’s healthcare team, especially if your child has a chronic condition or serious illness.
  • Stay up-to-date with all patient portals: Ensure you have access to the patient portals and other electronic medical record systems that manage your child’s records and keep your access up to date.
  • Keep your record copies organized:That way, you can easily access information, such as filing by date and medical specialty, or save them in a searchable digital format. Any system that helps you easily find what you need. (This is especially important if your child sees several doctors or healthcare professionals. If your child has a complex medical history, it can be difficult to keep up with specific diagnoses and treatment plans from multiple doctors.)
  • Bring records with you to appointments: Bring a file or binder, or be able to access them from your phone or another device. You may need to know dates, diagnoses, test results, medications, and other health information when asking questions and making treatment plans.

Know and understand your child’s medical history

Try to memorize the medical terms describing or frequently used to describe your child’s conditions. This can help doctors understand what you are saying and help you understand when a doctor or healthcare professional discusses your child’s condition.

Be aware of the tests and diagnostic procedures your child has undergone, as well as their results. If your child has a chronic condition or complex medical conditions, it may be helpful to have these tests listed in your phone or a notebook for easy access.

Empower your child to speak in medical settings

Part of being an advocate for your child is showing them how to advocate for themselves. Even younger children can express how they feel, if they hurt, or if something has made them feel better.

Older children can express specific details about their experiences and preferences in treatment options.

Explain things to your child in the moment. Ask the doctor or healthcare professional to use words your child will understand and to speak to your child if they aren’t. Most doctors who work with children are accustomed to speaking directly to them and will typically address both you and your child.

Build relationships with your child’s healthcare professionals

Spend time connecting with other healthcare professionals and support staff in your doctor’s office. You may interact with them more frequently than with the doctors.

Having respectful conversations can help foster the collaboration that leads to better health outcomes for your child and makes resolving potential misunderstandings easier. These professionals are your allies and will be involved in many stages of your child’s care.

Find support and participate in a peer community

Advocating is hard work, and you need to take care of yourself and the entire family. If your child has a complex medical history, chronic condition, or serious health event, finding support groups or advocacy groups related to your child’s condition can be life changing.

Meeting other families who have similar experiences to yours can be a valuable resource for information and advice, as well as a chance to have fun and be a family with other people who understand.

Finding support

If you’re looking for peer groups or family support groups, start by consulting your child’s doctor or healthcare team. They may have lists of groups and organizations that serve children with your child’s health condition and their families.

These organizations may also help you find organizations and support groups for parents and families in your area:

Even in collaborative healthcare relationships, there may be times when you need to express a difficult opinion regarding your child’s care. Perhaps you want to refuse a recommended treatment or are unhappy with a care event.

Advocating in these potentially awkward or emotionally charged situations can be challenging, but these are the times your child needs an advocate the most.

Here are suggestions for ways to handle difficult situations related to your child’s health.

When you need to escalate a situation or appeal to a higher authority

If your child is in the hospital, you have resources if you feel that concerns about your child’s care are not being addressed. You can reach out to your patient advocate. This individual works for the hospital, facilitating communication between patients or their representatives and hospital administrators, healthcare professionals, and other staff.

Some hospitals call their patient advocates patient experience representatives, patient liaisons, medical or health advocates, or case managers. In some hospitals, social workers and nurses provide this service.

Working within “hospital culture” and healthcare systems

Understanding and learning how to navigate the hierarchy of a hospital – who makes decisions and who answers to whom – is essential to effective advocacy. It’s also important to be aware of the systems in place designed to address patient (and parental) concerns.

If you are unclear about the various roles in the department from which your child receives services, ask your doctor or the nursing staff. The facility website should also include this information, as well as details about department chairs and other management roles.

Participating in mediation in medical settings

If you have disagreements with staff about your child’s care, treatment plan, or other healthcare options, you may need to work with a mediation team within that facility.

Mediation is a voluntary process designed to resolve disputes related to healthcare choices in a mutually beneficial manner. These teams may be referred to as ethics or mediation committees, or by other names. They include a non-biased, impartial mediator, healthcare professionals, and patient representatives.

Rather than assigning blame, the goal of this type of mediation is to resolve conflicts surrounding healthcare decisions in a way that preserves relationships, promotes collaboration, and ultimately benefits the patient. Mediation can help restore trust and create mutually acceptable treatment options.

This process is typically confidential, and your patient advocate may be involved. You may have representatives to help you, and you can also represent yourself and your child.

Getting a second opinion is a common practice. Multiple studies have found that obtaining a second opinion is a valuable tool for ensuring medical accuracy.

A 2020 study of a second reading of X-rays in children found that 92% of second readings agreed with the initial reading. Another study of children with cancer found that around 11% of parents sought a second opinion, and many of those parents approached the second oncologist via email.

If you have concerns about a diagnosis or treatment plan, it’s OK to ask your child’s healthcare team or doctor for a list of other doctors you might consult. You can also request a second opinion on the results of diagnostic screening tests, such as X-rays, CT scans, and MRIs.

If you have private insurance, they may have a list of healthcare professionals who provide second opinions.

Many people find it uncomfortable to be assertive with doctors. However, it may be helpful to know that research shows doctors often rely on families for important context and appreciate straightforward, assertive, and direct communication.

You may need to escalate your concerns, essentially advocate harder. If your child is in the hospital and you are worried about your child’s safety, feel like their needs are not being met, or have concerns about treatment, you have options.

You can respectfully ask to see or speak to a patient advocate, talk with the nurses caring for your child, or speak directly to the doctor. Many surgeons have staff members, typically nurses, who are assigned as the primary point of contact for parents.

You can ask to be included in rounds for your child – a time when the healthcare team meets to discuss your child’s care and treatment. For concerns about treatment outside a hospital setting, please call the doctor’s office and ask to speak with the doctor, the practice manager, or a member of the office staff.

You may have to leave a message at first. If your doctor has an online patient portal, you may get a faster response by using that tool to communicate with the doctor.

As much as you can. Most pediatric hospitals allow parents to stay in the room with their child, unless the child is in the intensive care unit. Many encourage parents to stay to help care for their children.

Attending rounds meetings, being present in the room when your child is examined, and taking notes and asking questions about your child’s condition and treatment are good ways to understand and advocate for their care.

You may want to ask for a second opinion if your child has a rare, chronic, or complex medical condition or if you have persistent concerns about their treatment plan and why other options are not being considered.

Being your child’s health advocate is one of the most effective ways to ensure they have the healthcare they need. Being a proactive participant in your child’s healthcare can have long-lasting positive benefits for them. Although it can be challenging at first, being an advocate is a skill that can be learned.

A few steps to help you effectively advocate include:

  • being informed and prepared for medical appointments
  • asking specific questions – more than one if necessary
  • building relationships with your child’s healthcare team, including support staff
  • being persistent even if it feels uncomfortable
  • being willing to respectfully escalate if your concerns aren’t addressed
  • finding support from other parents and your community

As with many situations that affect your child, when it comes to their health, you can be the best champion they have. Your involvement can help ensure that they get the care they deserve. In fact, simply by being an active participant in your child’s medical and health decisions, you improve the chances they will be healthier overall and have better outcomes if they face health challenges in the future.