Kids depend on adults for so many things—including their healthcare needs. The people that support your growing child's ever-changing needs, directly and indirectly, make up his or her team. As a parent, you and your child are center of that team.
Who is the Captain of Your Child's Healthcare Team?
According to the American Academy of Pediatrics (AAP) policy statement, Guiding Principles for Team-Based Pediatric Care, pediatricians (general pediatricians, pediatric specialists, or pediatric surgeons) have the training and expertise to oversee your child's care and lead the team. The statement also recognizes, however, that the team members and pediatrician leadership will change as the needs of your child and family change.
How team leadership can change as your child grows:
Team-based care is at the core of the patient-centered medical home. As a child gets older, his or her needs change. The medical home recognizes that the team of people caring for your child will also change. Examples are listed below.
In infancy: You may consider an expert in breastfeeding support, such as a lactation consultant, to be a critical part of your baby's (and your own) care team.
In early childhood: Your child might need services to help with his or her speech and/or reaching certain developmental milestones. Also, your family may benefit from parenting, housing or food assistance programs.
In school-age years: Children may need assistance adapting to a new school, navigating their social world of friends, or managing a medical problem—such as asthma—within their school, sports, or aftercare program.
In adolescence: Teenagers may benefit from community programs that help them with self-esteem, developing healthy relationships, avoiding risky behaviors.
Why Parents Need to Be the Coach:
Great teams are built on effective communication. And…parents are often the ones making sure to share all the information among members of their child's healthcare team.
Children with common chronic medical conditions (e.g., asthma, diabetes, obesity, attention deficit hyperactivity disorder) require a greater coordination of care. Pediatricians, for example, often include other "team players" such as caregivers, schools, dietitians/nutritionists, specialists, pharmacies, medical equipment vendors, counselors, and others to ensure that your child gets all of the necessary support.
How parents can communicate effectively with all team members and be their child's best advocate:
Plan ahead. Share information among team members with enough time so they can review it and use it to guide decisions—just as any good coach would. Find out how best to get that information to the team. Is it a fax, a portal message, dropping off a report, a phone call?
Educate, listen to, and empower your child. Over time, teach your child (if possible) to be the center of his or her own team and his or her own health advocate. There may be decisions that are necessary (such as a procedure), but your child has the right to understand what is happening and make choices when and where appropriate. For example, try to offer a younger child choices such as which arm to have blood drawn from or what reward he or she will get for cooperating. See Involving Your Child in the Decision-Making Process: AAP Report Explained for more information and tips.
Use available technology to facilitate communication. Find out what kind of technology is available to your child's team. Can they host a video chat? Can you send information via e-mail? Ask your pediatrician about any evolving technologies he or she recommends and whether it is possible for your child's electronic health records to be shared among team members.
Become an expert and an advocate. Knowledge is power. If your child has a specific medical condition, immerse yourself into learning as much as you can about the diagnosis, medication, and treatment plan. Remember to avoid "internet overload" by sticking to reputable websites like HealthyChildren.org. Don't forget to ask your child's doctors where he or she recommends going to learn more.
Talk to the school or child care provider. Often, sending a child with a medical condition to preschool or school, or even having siblings in school, can pose challenges. Educating school and child care staff about your child's condition and limitations can be difficult; ask your child's healthcare team if they can help educate so that everyone is better prepared to help. If your child misses a lot of school due to illness, talk with his or her teachers about ways to keep up with the work.
Make an emergency plan. Ask your pediatrician to help you write down exactly what the school or child care provider should do if your child has specific health needs. School staff should know how to reach you or your pediatrician in case there is an emergency. Remember to call the school right away when contact information has changed.
Don't go it alone. You are the center of the team, but remember there is no 'I' in teamwork. Everyone has unique strengths and knowledge. For example, if you are experiencing difficulty with insurance coverage, turn to your pediatrician. He or she can gather the right information and advocate on your child's behalf—a good thing to keep in mind!
Healthcare is a team sport that functions best when everyone on the team participates fully. Children and families as essential partners. But, as a parent, you should be at the center of it all. You know your child best and are in the best position to be his or her biggest advocate.
Parents, your involvement on your child's healthcare team sends a strong message that you are willing to stand up for him or her and seek appropriate services and support. Game on!
Additional Information & Resources: