Chances are you can remember a time when the health care system did not seem to take your concerns seriously or provided care in a way that hardly seemed “caring”. After all, the “system” is huge, so it is not always easy for one patient or parent to be heard. If this situation arises, what do you do? The answer has to do with your unique style of dealing with conflict, your trust in the health care system, and the degree of inadequate treatment. Remember: you are your child’s voice. Any child, and especially an ill child, depends on his or her parent(s) or caregiver to be proactive advocates for their needs. Does this mean being pushy? Hopefully not, but sometimes it does.
A good place to start when considering how to advocate for your child is to talk with your hospital’s child life or social work staff about your concerns. They are there to help and have a wealth of resources at their fingertips. They can offer helpful advice on how to navigate the system as well as support the developmental, social, and emotional needs of your child.
According to DirectionService.org, a special needs advocacy organization, you can improve your advocacy skills in seven ways. I’ve added my own suggestions and explanations to their tips below, and hope these will help you in your role as advocate for your child.
1. Taking care of yourself
Prepare to be an advocate by building up your own personal reserves. Do whatever possible to take care of yourself, even when this seems next to impossible. Get enough rest, exercise and make healthy choices when it comes to diet, even if it’s hospital cafeteria food. Make sure you have enough help and support for yourself, and have people you can talk to when the going gets rough.
2. Learning about your child’s special needs
Luckily, the Internet gives you some control in understanding your child’s medical issues, possible treatments or therapies, so do your homework. Being informed helps you understand what you don’t know and allows you to ask your child’s doctor the right questions. It will give you confidence in the decisions you are making for your child.
3. Learning about systems and laws that support families
Children with medical challenges are entitled to many educational rights. Become informed of the available options by asking your hospital if it has a returning to school program. If so, this program can help you advocate for the services your child needs at school. If not, make an appointment at your child’s school and do some research before you go so that you can ask the proper questions.
4. Preparing, organizing and planning for meetings
We have a blog article on just this topic, “Getting the Most Out of Your Doctor’s Appointment”. We encourage you to take a look.
5. Building your communication skills
It can sometimes be difficult to ask your child’s health care providers questions, and especially challenging to speak up when you disagree with one of them. Since you know your child best, you are his or her best advocate. If you feel you are having trouble communicating with your child’s health care team or really anyone in your life, why not pick up a book on communication and read it while you are spending long hours bedside or in the waiting room? We also have some helpful ideas on our blog.
6. Understanding yourself and others by getting perspective
Sometimes when we are so deep in the trenches we can’t even think straight. Stepping back from a situation long enough can help you be more objective. Try reaching out to someone you trust for their opinion or advice—they may show you a side of the situation you would not have otherwise seen.
7. Contributing to creative problem solving
Thinking outside the box is often required in a challenging situation. Nothing seems “normal” anymore for a family adjusting to a major health issue. Consider choices you might not have made otherwise and try things a new way. You might just find a solution you weren’t aware of at first. Families can be set in their routines, but if there was ever a time to change it up, this is it!
Sheri Sobrato Brisson is a brain tumor survivor who discovered the importance of self-reflection during her recovery. From her personal illness experience and a dozen years supporting families and children with serious illness, her life’s philanthropic mission is to empower families and children facing serious illness. She has started and facilitated support groups for children with illness and their families for over twenty years with organizations such as the American Cancer Society, National Brain Tumor Foundation, Ronald McDonald House, and Packard Children’s Hospital. She has served as Board Member for many children’s health nonprofit organizations including American Cancer Society San Jose, UCSF/Mt. Zion Auxiliary, Creighton Health Institute, and Okizu Foundation. Brisson received her master’s degree in counseling from Santa Clara University and her undergraduate degree in human biology from Stanford University.
Read more about Sheri at https://diggingdeep.org
Thank you for your great posts! I really enjoy how much thought you put into your content. I’m a bit surprised that Child Life Specialists were not included in “How to advocate for your child’s health care”. As a Child Life Specialist, this is our role within a healthcare setting. It’s crucial that parents are aware we are available and have the expertise skill set to advocate and meet each child developmental, social and emotional needs.
Please consider adding Child Life to your resources.
Thank you,
Sarah Morrison, CCLS
Hi Sarah, Thanks for your kind comments. For some reason I just got a link that you posts something years ago!! Just wanted to say we did mention to reach out to child life specialists in the second paragraph. We love child life specialists!! Sher
Thank you for mentioning how doing research online can help you come up with questions to ask your child’s doctor about their specific needs. My wife and I have noticed that our son’s lack of stamina prevents him from walking for long periods of time without losing his balance, and we’d like to make sure that he has the strength needed to attend kindergarten next year. Maybe we should find a professional that can assess his physical condition.
I’m sorry I did not see this comment earlier and just today got an email you had written! I hope you were able to get the help you needed from your professional. Parents know more about their child than anyone else and can help the professionals find the answers to their questions.
I’m glad that you mentioned how doing research on the internet can help you determine what you do and do not know so that you will be able to address a medical professional with any questions that you may have. My newborn son has been frequently coughing ever since my wife and I took him to a local park last weekend, and we’re worried that he may be experiencing breathing issues due to the dry weather. Maybe we should find a professional that can make sure that our child is okay.
I’m sorry I did not see this comment earlier and just today got an email you had written! I hope you were able to get the help you needed from your professional. Parents know more about their child than anyone else and can help the professionals find the answers to their questions.