Partnering with Healthcare Providers

Learning to communicate effectively with your child's health care providers will help you become an active partner in important care decisions and ultimately benefits your child's health. Effective communication involves much more than listening to what the doctor has to say; it also involves learning as much as you can about your child's condition, asking the doctor to explain anything you don't understand, and speaking up on behalf of your child. Your child's doctor is an expert in his/her field, but you are the expert on your child, and you can help the doctor understand your child and develop the best treatment plan for him or her.
Families want a healthcare provider who will be a partner in caring for their child. While sometimes a healthcare provider enters a family’s life suddenly in an emergency, most of the time parents are able to choose their child’s primary care clinician, within the limits of their health plans and provider availability. The primary care clinician can assist in overseeing all of the child’s care, including well care, referral to specialists, and coordination of care and services, including community-based services. This central caregiver approach to care is referred to as a “Medical Home.” To find a primary care clinician that meets the needs of your child and family:
  • Ask other families for their recommendations.
  • Contact a support group or disability organization for recommendations.
  • Ask the clinic about the provider’s knowledge and experience with your child’s specific needs.
  • Ask potential providers about their views on parents being present for treatments and taking a shared role in decision making.
  • Seek providers with whom you and your child feel comfortable and who you feel will understand your family’s customs and culture.
Research shows that when patients work collaboratively with health care providers to make decisions about their own care, health is significantly improved. This is also true in regard to a parent’s participation in their child's health care. After all, parents live with their child and care for them every single day. A parent knows all the ins and outs of a child’s daily care and special needs. A health care provider can't know that the medication prescribed to be taken three times a day requires 20 minutes to administer, unless a parent or caregiver tells her. It's up to the parent to ask if there's another type of medication that can be given more easily.

Before the Visit

Read up on your child's condition. Contrary to what many people believe, health care providers are becoming accustomed to more health-savvy patients. Many of them are even relieved when they don't have to spend too much time explaining basic facts about a health condition.
Use the library or the Internet to learn everything you can about your child's disability or medical condition, including common treatments. Remember, though, that not all websites will give you accurate information. Look for government sites or those affiliated with an educational or well-known medical institution.
Write down questions as they arise so you can ask your health care provider for clarification. It can be very difficult to remember your questions later, when there are so many things going on in the life of a family.
Keep a journal or notebook of your child’s responses to treatment, new signs and symptoms, and other concerns.
Maintain organized medical records, including dates/places of visits to specialists, emergency room visits, hospitalizations and surgeries.
Keep the contact information of all health and community providers organized and accessible (names, addresses, phone and fax numbers).
Choose your appointment time carefully. If your child's appointment is a first-time visit to a health care provider, or if you believe you need a longer visit to discuss a particular problem in greater depth, ask the scheduler to allot extra time for the appointment. Consider what time of the day works best for your child. Most kids have more trouble waiting in an exam room when they're tired or hungry, and you can avoid this challenge by scheduling the appointment right after lunch, or midmorning if possible.
Prepare materials to show the provider. Be ready to discuss your child’s condition, drawing on your expertise and from the experiences of others who are around your child often. Your health care provider has an allotted amount of time for each visit, and the reality is that he has many other patients besides your child. You may only have a short time for consultation, so it’s very helpful if you have everything ready to present in the most efficient manner. For a first-time visit, this may include a brief history of previous medical care, a list of immunizations given and the medications or treatments your child takes, a list of current symptoms or problems, and any questions you may have.
For subsequent visits, such as medication monitoring, Peggy Morgan of LaPine, Oregon, mother of a child with developmental disabilities and author of "Parenting Your Complex Child," advises a chart or spreadsheet compiled from a daily journal. "When you have a complicated child, it can be difficult to show the health care provider what you're seeing, such as out-of-control behavior, appetite changes or reaction to medications. They are much more impressed with data."
Prepare your child for the visit by telling him what to expect. Take comfort items along to the appointment and discuss appropriate ways a child can express his feelings.
Enlist help. If an unfamiliar medical office creates anxiety for your child and can trigger a meltdown, ask another adult to accompany you to the visit. You may need this person to entertain your child in the waiting area for part of the appointment, while you speak to the health care provider alone.

During the Visit

An office visit may be as short as 10-20 minutes, so you need to make the best use of this time. Following are some tips for a good visit.
Keep an open mind. Even if you believe that your child is not reacting well to a new medication or treatment, avoid drawing conclusions or telling the health care provider what you want to happen — at least initially. Remember that you're a team, and both sides should present all information before a plan is made together. "Just tell them what's happening, this is what [you are] seeing," advises Morgan.
Share information with the provider about how your child is changing.
Listen carefully. After presenting information about your child, listen to what the health care provider says. Take notes if necessary, so that you can refer to them later.
Ask questions. Don't be afraid to ask questions if you don't understand something, no matter how "dumb" you might feel it is. For example, if a diagnostic test is suggested, ask what the test involves, why it is needed, and when you will be informed of the results. If the health care provider uses language you don't understand, ask him to rephrase the statement.
This is your opportunity to ask the questions you prepared prior to the visit, too. Be sure to ask them in priority of importance, in case time runs out. Ask about resources that may help your child and family. If you have identified resources that may help other families, share those resources. Ask about how to get care after hours if needed.
Make a plan. Work with your child's health care provider to make a plan. Don't be afraid to ask for another visit to discuss things more thoroughly if you need to do so. If you need more information about a proposed plan of treatment or a test, ask the provider to recommend appropriate resources. Finally, always ask when the health care provider would like to see your child for follow-up.
Ask to meet the office staff who will be working with you and your child (nurses, referral coordinator, billing person, etc.).

After the Visit

Don't hesitate to contact your child's health care provider if you find, once home, that you don't understand his or her instructions. Many times, the office staff can have the provider return your call, or will ask for clarification and then let you know what the clinician advises. If your child is experiencing any problem with a new medication or treatment, don’t hesitate to call immediately.
Remember - A parent knows their child better than anyone and should be empowered to be part of the decisions for their child. The child's healthcare clinicians and team need the parent’s expertise to help them give the best care. Building a partnership means having the healthcare team listen to the parents about concerns and answer questions.
The primary healthcare clinician provides the child with comprehensive medical care and non-medical family support such as:
  • Answering questions
  • Sharing decision-making
  • Communicating with other professionals
  • Coordinating care for your child
  • Providing resources and finding out how well they worked
  • Building bridges among families and health, education, and social services
  • Developing comprehensive plans of care that address your individual child’s needs
  • Developing plans for emergencies
  • Monitoring, updating, and following-up on care
  • Respecting your values and culture
  • Promoting health and quality of life for your child and family
Fostering a partnership takes time and energy, but it's well worth the effort. Working together, you and your child's provider can help your child stay as healthy, safe, and happy as possible.
Change providers if you cannot work out a way to feel satisfied. Many times, differences of style or other difficulties between families and providers can be worked out over time. However, if you have not been successful in building a helpful partnership with a provider, seek out a provider who better fits your needs. Tell the provider who you are leaving why you want to change. Your input may help the provider work with other families in the future.
Practice speaking up on behalf of your child. Many parents feel uncomfortable talking with doctors, afraid of asking stupid questions, or of seeming impolite by questioning something the doctor has suggested. The following are some examples of positive ways to voice your concerns. Most parents find that speaking up gets easier with practice.
  • Your child's doctor writes a prescription for chewable antibiotics, but your child has a hard time with chewables. Tell the clinician that your child has had problems with chewables in the past, and ask if there are any alternatives. You may also ask the doctor to document in his record that chewables are not a good option. That way, anyone looking at his record in the future will also be alerted.
  • You have received a third letter from your health insurance denying payment for services you know should be covered. Take a deep breath and call the insurance company. Explain to them, "I have a bill and a denial in front of me. Can you help me figure out exactly where the problem is?" By appealing to the person on the other end of the phone, rather than getting angry, you have a better chance of getting to the root of the problem. Ask your doctor's office staff for help, too - they may even call the insurance company on your behalf. Sometimes the problem is the doctor's use of an incorrect procedure code or a diagnosis code that is not recognized by the insurance company.
  • Your child has just been scheduled to have blood drawn for the second time in one week. First, remember that the doctor may not know or be able to remember all of the details immediately, but that you are there to remind her. "Did you know he already had some tests done this week? Can we get any of the information you need from previous tests? Or can we combine them with the tests his other doctor has just requested?" Talk with your doctor's office about scheduling appointments and tests together to save travel time. Often the nurse or the administrative staff can be very helpful. And ask your doctor to try to communicate with other involved doctors. It may be possible to coordinate lab tests in order to avoid duplication and to reduce your travel time.
  • The doctor has quickly written a prescription for a medicine you know is extremely expensive. Let the clinician know that it is really expensive and ask if there is a generic brand that could be prescribed instead, or ask if they have any samples you can take home. You can also call your pharmacist for help - sometimes there isn't a less expensive option, but often there are alternatives. There are also financial assistance plans for certain situations. Don't be afraid to ask for help.
Being an active part of your child's health care team is the best way to help your child. Keeping good records and keeping the communication lines open will help everyone help your child.


Information & Support

For Parents and Patients


Families Partnering with Providers
Tips to help families build effective partnerships with their child's health care providers, Family Voices 2007.

Family/Caregiver Survey, CMHI
A survey for family/caregiver to assess the quality of pediatric health care, by the Center for Medical Home Improvement (CMHI).

How to Partner with Your Physician (AAP)
Provides information for families as well as tools and resources that are helpful for parents and caregivers of children with special health care needs; American Academy of Pediatrics.


Family-Centered Care Self-Assessment Tool
Provides an opportunity for reflection and quality improvement activities related to family-centered care, for families and for healthcare providers to assess care for all children and youth, and also has some questions that are specific to the needs of children and youth with special health care needs and their families. Developed by Family Voices

Family-Centered Care Assessment for Families (FCCA-F) (Word Document 242 KB)
A survey to measure the quality of family-centered care that a health care provider gives to a child and family; for pediatricians to give to families. Developed by Family Voices

Services for Patients & Families Nationwide (NW)

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* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Current Authors and Reviewers:
Author: Shena McAuliffe, MFA
Reviewers: Tina Persels
Gina Pola-Money