Advocating for your Child in a Hospital Setting

This weekend a Down Syndrome family member had complications with his new medication. He was taken to the hospital, and hopefully will be doing better soon. I believe my family’s quick response and advocacy made a huge difference. This led me to do another advocacy post. I hope this helps with others who need to advocate for their children in a hospital setting.

When advocating for your child, you should:

1.)  Do your research. Knowledge is power! Know:

a.     Medications- know all of the medications and dosages your child is being given. Research the medication. Know the side effects and warnings. Contact the doctor if you are noticing the side effects harming your child, or if you think the dosage might be off.

b.     Diagnosis- learn everything you can about the diagnosis. See if you can find other parents who have gone through similar things that can help you through this journey. Also, read studies that have been done on children with this diagnosis. The studies might help during treatment.

c.      Tests- be aware of the tests they want to do on your child. The length of some tests can make a big difference. If the tests are not finding results, maybe they need to test for a longer amount of time.

 

2.)  Document everything: Your observations of your child could make a big difference in the doctor’s treatment.  Write down times of medication and results. This will help your doctor know if the dosage was correct. Also track how your child is eating, sleeping, going to the bathroom, and behaving.

 

3.)  Ask questions and be involved: It is important to be a partner in your child’s treatment. Ask questions if you do not understand what the doctor is taking about. Also, ask for resources to help you learn everything there is to know to help your child. You have the right to know everything going on with your child, so you can make the best decisions about their care.

 

4.)   Be firm and persistent, but courteous: If you are not seeing desired results or have concerns, do not let the doctors blow you off. Be firm and persistent, but courteous. Being rude could damage your relationship with the doctor and staff. You really need everyone working together as a team to get your desired results for your child.

 

5.)  Love on and support your child: Let your child know that you are there for them and comfort them when they are scared or nervous. Spend time with them watching their favorite show, doing puzzles, reading books, and playing games. This will ease their nerves and make them feel more comfortable during this time.

 

Doctors see your child for a fraction of the time. You are with your child daily. Who better to advocate for them than you? You have been observing them around the clock and know their needs. It is so important to speak up on behalf of your child, so they will have the best care possible.