When doctors give you difficult news about a diagnosis, you may hear what they say, but it can be hard to understand what they mean. And when you don’t understand, it can be hard to ask the right questions. Don’t worry if you are confused at first—most of us are. Here are some ideas that can help you get better at talking to doctors so that they explain what you need to know in a way that you can understand it. It takes practice, but it’s your right to understand, and your child is worth it.
Knowing what to ask for when you are in a stressful situation with a doctor or other health professional can be a big help. Here are some suggestions for what to say and what to ask for:
- "That term is confusing to me. Can you please write it down?”
- “Is there a brochure or something you can give me to read that will help me understand what you are talking about?”
- “Will you please repeat what you just told me?” (Then repeat the information back to make sure you heard it correctly.)
- If a doctor or healthcare professional uses an acronym (letters that stand for a phrase, like EEG, or CPR), ask, “What do those letters stand for, and what does that term mean?”
- “May I have a few minutes alone so that I can gather my thoughts to think of the questions I need to ask?” or...
- “May I have another appointment so that I can do some research and return with questions for the doctor?”
If while you are pregnant you receive information that your baby might be born with a disability there are several things you can do. Use the resources listed in this article to learn about the disability and to find another parent to talk with. Your local ECI program can provide you with more information about the disability and how it will impact your child's development. Although you won’t be enrolled in services until your baby is born they will explain to you the steps to take to make a referral once that day arrives.
You may get a lot from reading The Word That Changes Your Life (PDF) by Alyssa DiFilippo. She’s a mom who talks about how the the word “diagnosis” changed her, and she gives you advice for dealing with your child’s diagnosis.
Dell Children’s Hospital of Central Texas’ Health Encyclopedia is a searchable library of Health Sheets written to help families and patients understand diseases and conditions, diagnoses and treatments, surgeries and procedures, and wellness and safety for people of all ages.
Find a Condition from Texas Scottish Rite Hospital for Children will help you find details about the cause of different conditions, how they are diagnosed, and treatment options.
The Centers for Disease Control and Prevention provides information on the diagnosis and treatment of Autism.
National Organization for Rare Disorders (NORD) has a rare disease database of information. Their resource links can help find financial and medication assistance, information on newborn screening, genetics and laboratory testing, as well as resources for children with disabilities.
MedlinePlus from the U.S. National Library of Medicine and the National Institute of Health offers an online medical dictionary. Their online interactive tutorial, Understanding Medical Words, gives you tips to help figure out on your own what medical terms mean.
As you may have noticed, there’s no shortage of online health information resources. But how do you know which ones are worthwhile? MedlinePlus’s Guide to Healthy Web Surfing explains how to tell the good health information websites from the bad ones.