NHPCO’s Caring Connections offers some suggestions to parents and other family caregivers talking with health care professionals about a child coping with an illness.
Before an appointment, write down your child’s symptoms and your observations, such as:
- Has he or she had a fever?
- Does he or she have new symptoms?
Make a list of your own questions and concerns before the visit. Help your child prepare a list of questions for the healthcare team before visits and practice going through the questions to help your child become confident about speaking up when something is not understood.
Take a pad and pencil with you to your appointment so that you can write down what your doctor says and review it later when you have more time to digest the information. A tape recorder is also helpful. Better yet, have a friend or family member go with you to take notes.
Make sure you understand the illness or symptom and the treatment options. Ask your doctor questions, such as:
- Does my child need any new testing—x rays, cultures, blood work?
- How do you know he or she has [diagnosis]__________?
- Are there other names for my child’s condition?
- How will this condition affect my child’s body?
- What treatment do you recommend and why?
- What are the side effects of treatment?
- Are there other alternatives?
Keep communication open during healthcare visits. How much and when to share information regarding your child’s condition is an important topic. Ask your doctor and the team caring for your child for guidance as they begin to know and understand your child. Discuss ways to help your child feel in control at a time when so much seems beyond control.
Don’t be afraid to give the healthcare team feedback if they are not getting through or are confusing or frightening your child. “Medical talk” confuses most adults, let alone children who may be scared by their doctor and other healthcare workers.
Remember, you don’t have to “get it all” in one visit. Most illnesses, especially serious ones, evolve with time and so does the doctor’s understanding both of the illness and of your child. Ask—if the doctor doesn’t offer—when you call or visit with more questions.
If you need things repeated, ask again. Don’t be afraid to ask to have information repeated as many times as needed. Your child’s doctor will want you to have a good understanding of the diagnosis and recommended treatment.