Helping Children Follow Their Medical Treatment Program:  Guidelines for Parents of Children with Rheumatic Diseases

Adapted and published with permission from Michael A. Rapoff, PhD of the University of Kansas Medical Center, author of "Helping Children Follow their Medical Treatment Program: Guidelines for Parents of Children with Rheumatic Diseases"

Understanding What's to Be Done and Why

It’s important that you and your child understand what your child is being asked to do and why. Many patients and their families simply don’t know what they should do or else they don’t understand the purpose of the treatment prescribed. At each doctor visit it is important that you know specifically what your child is to do. Some parents do take notes and ask questions. Sometimes this does not happen. One way to keep track of changes in your child’s treatment regimen is to use a regimen checklist form. On this form you can record changes made in your child’s treatment program and when the change was made. This way, you and your child can remember what you are supposed to do.

It’s important that you understand the regimen prescribed for your child. Ask questions if you are not sure. For complex regimens, such as range-of-motion exercises, try to rehearse these with the therapist before leaving the clinic. This way, you and your child will be sure about what you need to do.

The reasons why your child needs to do what is prescribed can best be explained by the doctor, nurse, or therapist. Generally speaking there are several reasons why it’s important that your child follows a prescribed treatment.  It will control disease symptoms. Medications for rheumatic diseases, for example, control symptoms such as joint stiffness and swelling.

If your child is consistent in following her treatment regimen, the doctor or therapist can fairly evaluate the effectiveness of the treatment. If your child is inconsistent, it’s hard to tell whether the treatment is working or not.  If your child is consistent in following her treatment program, you may minimize further diagnostic tests and some treatment services. This not only spares your child the need for some services, but also saves you money that would have been paid out for these services.

Consistency in following the treatment program is more likely to lead to your child being off the regimen. For example, your child is more likely to get off all medications if she is consistent in taking the medications and has no symptoms over a period of several months.

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