How to advocate for your child during hospital stays

Medically complex children are exactly that…medically complex. This is why hospitalizations can be particularly challenging and stressful for us. We know our children best. When our children are hospitalized we must find a balance between advocating for our children and allowing the medical team to treat our child’s condition.

We have been through many hospitalizations with our son, some just overnight and some as long as many weeks. Short stays are usually a breeze but longer stays tend to increase our anxiety levels. We have learned some strategies along the way that have helped create a smoother experience for us and might do the same for you:

10 Tips on Advocating for Your Child in the Hospital

1. There are many people asking the same questions when your child is admitted. While many people find this frustrating, this is an opportunity to ensure the information gathered about your child is correct. Did you know that a patient’s diagnosis is based 90% of the history (description of what has been happening and how your child describes feeling) and only 10% on the provider examining your child? You can then see why this is so important. Repeating the same story to different people increases the likelihood that your story will be told correctly. This is where your medical history sheet might also help out for the basics on your child. see our post on creating a medical history:
2. Don’t be afraid to kindly correct people if you hear your story told inaccurately. After all, you lived the story but they are hearing it for the first time so information may get lost. Sometimes information is not passed on accurately when one doctor signs out to the next doctor. It’s like the old game “telephone” in which a message is completely transformed by the time it reaches the 6th person. Many pediatric hospitals involve parents in their daily rounds, which is ideal. This is where most of the information about your child will be discussed so you can correct any discrepancies. When they ask you if you have questions, let them know which information is incorrect if you feel it was important. It can be intimidating to speak in a circle of white coats staring at you but remember that you are the expert on your child.
3. Be vocal about how your child and his/her condition looks like on a typical day, particularly if your child is delayed or non-verbal. This will help the medical team gauge your child’s progress. I often show them a video of our son so they can see how he looks at baseline.
4. Ask questions. Be informed about why tests are being done or why treatments are being changed.
5. People should introduce themselves when talking to you or your child. If you are not sure which department someone is from, ask them to clarify. Set the tone for how your child should be treated. When I am at a hospital where introductions are not happending, I ask the nurse to place a sign on the door that says “Please kindly introduce yourself”. This may seem like a petty thing, but it can get quite annoying when people repeatedly walk in and start doing things with your child without your knowing their role.
6. Ask for an interpreter. If English is your second language, the hospital should provide a translator to avoid gaps in communication.
7. If there is something important about your child’s care that you find yourself repeating, ask the nurse to post a sign. For instance, if your child is allergic to medical tape, ask the nurse to put up a sign above the bed. This will keep everyone informed and avoid mistakes.
8. If you would like the medical team to consult with your child’s regular specialist prior to making any long-term treatment changes to your child’s condition, ask for this . Provide the specialist’s contact information to make things easier. Be insistent if this is important to you. Otherwise, you will find yourself at the mercy of multiple specialists and their differing opinions from one day to the next. Remember that you can also request a meeting if you find that everyone is not on the same page. The best way to do this is to ask the nurse or nurse manager.
9. Be aware that medical teams tend to change on weekends and holidays. If you feel something is important, request the current team to pass the information along. Never assume something was done. Always ask. Do not leave important questions for Friday afternoon, either. Ask your questions early so you can have an answer before the team leaves for the weekend. The doctors seeing your child on the weekend may not necessarily be as familliar with your child’s case.
10. Provide feedback to help improve care. This will likely benefit you if you return with your child and help other families, too. I always like to let hospitals know what’s great about their hospital along with what may have been disappointing. More families providing feedback may make an impact. You can do this through the patient advocate or the nurse manager.