When your child receives a cancer diagnosis, you may feel just as lost and terrified as they do. But ultimately, children – especially young children – depend on their parents and guardians to advocate and protect them throughout the treatment process. Sometimes, only you can be your child’s voice.
Medical advocacy actively supports, guides, and safeguards a patient’s health and rights within the healthcare system. It includes a range of actions that help patients navigate complex medical situations, access necessary care, and make informed decisions. Depending on the circumstances, medical advocates can be family members (such as parents), friends, trained professionals, or the patients themselves.
Because pediatric cancer patients can range from infants to young adults, their ability to advocate for themselves can be limited. They may not have the confidence to speak up, the understanding of their experiences to accurately explain, or the knowledge to know all their options.
That’s where you come in.
Educate yourself about your child’s condition, symptoms, and treatment options. Ensure you consult only reliable sources, including reputable health websites and resources from your child’s healthcare provider. There’s a lot of misinformation out there, and you don’t want to go down the wrong path.
Bring a list of questions to appointments and consultations. Write down the answers and any instructions. Ask for clarification if you have any doubts, no matter how small. It may be helpful to repeat what you’ve understood to ensure clarity.
Keep a folder (digital or physical) of your child’s medical history. It should include medications (plus dosages), test results, diagnoses, and treatment plans. This can be invaluable, especially if you’re seeing multiple providers or specialists. That paper trail is critical, as it can prevent a back-and-forth between providers or having to overexplain or retest with new doctors.
Share observations about your child’s symptoms, reactions to treatments, and changes in behavior. You’re with your child more than anyone else. You know better, then, if something seems off! Pay close attention, ask your child how they feel, and work to convey this information thoroughly. Detailed, accurate information helps the doctor make informed care decisions.
Parents often have a sixth sense when something isn’t right. If your concerns aren’t being taken seriously, be persistent. Trust your intuition and ask for second opinions. Unfortunately, many people go undiagnosed or untreated because they aren’t taken seriously. Be the squeaky wheel on your child’s behalf.
If a recommended treatment doesn’t feel right or has significant risks, ask about alternatives and seek second opinions. Certain conditions have complex treatment choices; navigating them isn’t always cut-and-dry. You are well within your rights to explore other options. Ultimately, listen to the wisdom of trusted medical professionals – just don’t be afraid to ask questions and search for additional input.
Foster open communication and respect with your child’s healthcare providers. They’re more likely to value your input when they see you as collaborative versus combative. As you advocate for your child, assume the care team has their best interests at heart. This is all stressful and scary – but resist the urge to take it out on the medical professionals.
Encourage your child to ask questions and express how they’re feeling as soon as you can. Show that you value their opinions and take what they say seriously. If you, as a parent, are dismissive, children learn that they won’t be listened to. This can put up barriers to future self-advocacy.
Show interest in how your child feels physically and emotionally. Pay attention. Ask your own questions. Teach them how to talk about these things. And, most importantly, teach them that they are worthy of being taken seriously!
Finally, parents, seek your own support. It’s so hard to do this alone. Don’t hesitate to contact patient advocates, support groups, or even legal advocates for more complex medical or insurance issues. They can provide guidance and resources to help you navigate challenging situations. People are ready and willing to help you throughout this journey.
No matter what happens, you don’t have to do it alone. As you advocate for your child, remember to advocate for yourself, too!