Being a parent has challenges. Navigating the healthcare system has challenges. A parent navigating healthcare with their child, well, that’s overwhelming!!
When my first child was over a year old, they started breathing a little funny. Of course, it was after hours, so my husband and I kept a close eye on them. As the evening went on it worsened, so the after-hours service was called and at 10pm we were on our way to the emergency department. Was I nervous and scared about my child’s health? Yes. Was I confused by what I was being told and overwhelmed by being at the hospital? No. Why not? Because I knew some of the workers, I knew the language, I knew what to expect from the healthcare system, and most importantly, I knew how to advocate. That was the first moment I realized how privileged I am to be a pediatric pharmacist and started paying more attention to the barriers and complexities of the healthcare system from the parent’s viewpoint.
Through more experience and life events, I got a calling to become a pediatric patient advocate. My initial goal - teach parents, families, and caregivers how to advocate for their child’s healthcare needs. After all, we want to do what is best for our children. But what if, what is best, is taking a step back and advocating with our children and teaching them how to be self-advocates?
So, how do you support your child’s involvement in their care?Before The Appointment:
- Discuss with your child how involved they would like to be during an appointment.
- Come up with strategies to ensure they have an opportunity to communicate their needs and ask questions.
- If any procedures or tests are anticipated, discuss this openly with your child.
- Ask your child if they want time alone with the provider to talk about any topics they aren’t comfortable talking about with you present.
- If your child wants, remind them of any pertinent health history and medications so they can provide this information when asked.
- Even if you feel intimidated or overwhelmed, keep trying to hold space for your child!
- Encourage your child to ask questions and don’t dismiss or belittle them as silly or unimportant.
- When the doctor directs a question at you about your child, ask your child if they want to answer the question first. If they do, give them time to answer.
- If they are having trouble communicating something, ask your child if you can help explain before you talk over them.
- Give your child privacy (time alone with the provider) to talk about topics they aren’t yet comfortable discussing in front of you as their family member.
- If an important healthcare decision needs to be made and was unexpected, ask the provider if you can have time to talk it over and make a follow-up appointment.
- Ask your child how the appointment went and if they want to talk about their health or care further.
- Don’t assume how involved a child wants to be in their health and care decisions.
Remember that children and adolescents value adult participation in their care to help assist with understanding information and making decisions. It should not be ‘all or nothing’. It may change from day to day. If there are health decisions that are small, they may want to make the decision independently. If there are decisions that are serious, they may prefer that only adults and the providers make the decision. There are going to be times when your child will be a self-advocate rock star and times they will be disengaged. It’s ok! Keep the lines of communication open!
Even if you are uncomfortable interacting with the healthcare system, let’s make sure we teach kids to speak up for their health and care needs!
Including kids in their healthcare will build a trusting relationship and lead to better self-advocacy! I hope to teach as many families as possible how to advocate with their children. Because when it comes to your child’s health, you and your child are the best patient advocates there are!
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