Most parents of children and adults with WAGR syndrome interact with many doctors. The best parent/physician relationship is a partnership, with both parties contributing to the goal of good care.
Here are some tips for creating and building a good parent/physician partnership:
- Be Prepared
- Write down your questions before the appointment. Take the list with you, and write down the answers as they are given.
- Take someone else with you, if you can. If your infant is fussy or your child needs attention, this other person can care for him/her while you are talking with the doctor.
- Prepare the Doctor
- When the doctor comes into the room, tell him you’ve been looking forward to this visit and you have some questions. Ask him whether he’d like to address these questions now or after the exam?
- Start your list of questions with an introduction. Explain that you are aware that your child has a rare condition and that caring for her will require a partnership between yourself and her physicians.
- Be Assertive
- Remember that a positive attitude will get you a lot further than a negative or aggressive one.
- Try not to be intimidated. Doctors put their pants on one leg at a time, just like the rest of us. They also appreciate patience and understanding as much as the rest of us, and these can go a long way toward building a good relationship.
- If the doctor says that his time is limited, it may well be. Spending an extra 30 minutes answering all of your questions right now could result in a waiting room full of angry patients for the rest of the day. An assertive response would be to suggest another appointment just for the purpose of addressing your questions.
- If the doctor seems reluctant to discuss something with you, say so. “Dr Smith, I would really appreciate more detail on this, if that is possible. I sense that you are reluctant to say more.” That puts the ball in his court and gives him a chance to explain.
- Remember that good relationships take time to develop and that you are in this for the long haul.
- Think about the things that are truly important to you in a physician: knowledge, skill, and experience, for example. Then there are things that are nice to have, but not vital to good care, such as a sense of humor, or a warm and friendly personality. It’s great when a doctor has all of these qualities, but when they don’t – consider your priorities when deciding whether to continue the relationship.
- Educate yourself about your child’s condition. Being a good advocate for your child means learning about the conditions associated with WAGR syndrome. But be careful about how you present information to the doctor. For example, sharing a copy of “Health Supervision for Patients with WAGR Syndrome” will be helpful, but reams of emails or stacks of journal articles will not. When you do offer information, do it in a positive way. For example, you can say, “I have read that children with Aniridia should be examined for glaucoma every 6 months. Could we discuss the pros and cons of doing an exam under anesthesia?” If he wants to know “where you read that” then you can certainly present documentation.
- Cultivate a good relationship with the doctor’s staff too. A smile or a kind word of appreciation can go a long way toward making the nurses, technicians and office staff your allies in getting the best possible care for your child.
This page updated: February, 2015
Kelly Trout, BSN, RN
International WAGR Syndrome Association
- For Families
- Coping with the Diagnosis
- Coping with Wilms Tumor
- Coping with challenging behavoirs
- Medical Care for Your WAGR Child: Checklist for Parents
- Successful Parent-Physician Partnerships
- Family Stories
- Siblings Perspective
- Early Intervention and Special Education
- How to create a medical History Form
- In Memoriam
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