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Page 6 A
PARENT'S GUIDE TO Q: What are the Parents' Responsibilities? A: Families also have medical responsibilities. You, after all, are the ones who will carry out the doctor's recommendations. You are the primary caretaker of your child and to do so, you need to be sure you understand the doctor's instructions. Take a notebook with you so you can write down any instructions, names of specialists, or suggestions and observations. If the doctor prescribes a medication, be sure you understand how it is to be given and when. Should this be taken before, after or during meals? Does this medication have to be given at school or can it wait an extra hour until your child comes home? Are there any side effects you need to watch out for? (More questions are listed at the end of this article.) If the doctor refers you to a specialist or requests tests be done, ask how this test or referral will make a difference in the treatment of your child. What information is needed to help this child and how will this referral supply that? Ask the doctor to help coordinate this referral and/or tests so they will be conducted efficiently and will cause as little trauma for your child as possible. For instance, if blood tests are necessary, can all be done at one place so blood will only need to be drawn one time? The object is to get the maximum information with the minimum discomfort to your child. For families using clinics, case management may be a difficulty. While one role of a primary care physician is that of case manager or overseer of all medical and medically related services, you and/or your family may need to become the case manager if your primary care is handled by a clinic. In some instances, case management may be available through the nursing staff of the public health clinic or arrangements may be made by them. Again, this service varies in each locality and is dependent upon certain criteria. Some clinics have social workers on staff who can work with families to help coordinate services. If your child is an infant or toddler (birth to 3 years), Public Law 102-119, Part H, The Early Intervention Program for Infants and Toddlers with Disabilities, may be helpful in this area. You may find it useful to contact the early intervention representative in your state or local area, or the Bureau of Indian Affairs if you live on a reservation. In some states, this information can be found by calling your local school, or the Special Education Director, or by calling the local Health Department, listed in your telephone book. If you would like more information about early intervention services available under Public Law 102-119, you can also contact NICHCY. Public Health Departments, IHS, and clinics are organized differently in different areas, however, all can provide medical records to you and to anyone else you ask them to send the records to. If you are involved with several specialty clinics, doctors and/or therapists, be sure one is getting reports from all the others. This is important so tests aren't unnecessarily repeated and so medications are monitored. In general, the local clinic who first saw your child and who referred you to the specialists would be the clinic to keep all the records. If the doctor at the hospital where your child was born is the one who originally referred you, you will need to ask if this doctor is now the primary care physician or if you need to visit your local clinic and establish yourself there. The important thing is to be sure someone has all records in a single location and can provide needed information to specialists and any new doctor seeing the child. This person may be you. Remember that it is often difficult for a pediatrician to say, "I don't know." You should ask all the questions you need to feel comfortable that you understand all recommendations and diagnoses, but you need to also be aware that not all of your questions can be answered. In a team effort, everyone needs to take his/her turn listening and understanding. . Q: How Do You Evaluate the Situation? A: Evaluating the situation is an ongoing process involving team effort. Families see their child most, then schools (if the child is school age), and then the therapist(s); a doctor sees the child infrequently. Therefore, families are the primary evaluators of their child s progress, with the reports of schools, therapists and others. Children frequently behave differently in school and at home. It is important for everyone to communicate openly. Teachers and therapists report regularly; if you feel you need more information from school, you can arrange to meet with your child's teacher(s) and/or therapist(s) to discuss your concerns. Information from the family/school team can then be presented to the doctor, if appropriate, and he/she can join the team for some decisions or suggestions. Since the doctor is the only team member who has no opportunity to observe your child "in action," you must report all relevant information accurately. Evaluation
of the doctor or clinic is a parent responsibility. With the list
of needs discussed earlier in this article, you can develop your
own criteria of satisfaction. Establishing a good partnership with
your child's doctor is the overall goal. This will take some time
on both parts. You and your child's doctor should have mutual understanding
of needs, schedules, perceptions of emergencies and non-emergencies,
etc. It is usually worthwhile to work on your relationship with
your child's doctor, discuss any concerns or specific needs you
may have, and to change doctors only if you feel that he/she is
unresponsive to your child.
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