Focus On Pediatrics-Navigating health care takes more than a compass
Teach parents communication, roles of disciplines
Without education, parents don't know how to navigate the health care system. Yet when their child becomes ill, which is a critical time in their life, they must communicate with the health care team, figure out the roles of all the disciplines caring for their child, and interpret insurance paperwork.
To help parents partner in their child's care, Children's Hospital of Philadelphia created a workbook and class titled Partners for Excellence. "The course is taught by parents for parents. It provides an opportunity for parents to share strategies," explains Juliette Schlucter, family programming consultant at the hospital and mother of two children with cystic fibrosis.
The workbook that provides the outline for the class is divided into several informational sections that include:
• Partnerships in pediatric health care.
In a pediatric care setting the partnership is not just between the patient and physician, but includes the entire family and medical team. This section discusses the spirit of partnerships and how all family members count, including siblings and grandparents.
• Communication strategies.
This section teaches parents how to give negative feedback as well as positive feedback to the health care team. Parents learn how to provide constructive criticism that preserves the trust of the relationship.
• Who's who on the health care team.
The roles of the health care team can be confusing. This part of the workbook explains the difference between a nurse practitioner and a clinical nurse specialist and defines all the disciplines and their roles. It also defines "medical speak," such as what PRN means.
• A family's need for information.
This section addresses the value of information and teaches parents how to be discerning about the facts they pick up. For example, it discusses the importance of determining whether information comes from a good scientific study or is unproven.
• Insurance and managed care.
Parents with chronically ill children end up having file cabinets of insurance forms and must learn how to partner with their insurance company and case manager, says Schlucter. This section covers managed care jargon and discusses where to go with questions. It also provides tips on working with insurance companies, such as documenting conversations in case there is a dispute at a later date.
• Log for tracking medical information.
At the back of the workbook are pages for parents to keep their child's health diary. There is a place for the child's medical history, contact information for the health care team, general health information such as allergies, a medication summary, significant diagnoses, medical procedures, and history of hospitalizations.
Partners for Excellence was launched in September 1996 and taught in the cafeteria or in the family lounge. When the family resource center was completed at the hospital, the classes were moved to that facility. Now the information is given to parents on an as-needed basis. Social workers and nurses contact Schlucter to teach parents one-on-one at the bedside, and support groups invite her to come and speak.
For more information about Partners for Excellence, contact:
• Juliette Schlucter, Family Programming Consultant, Children's Hospital of Philadelphia. Home office: 1319 Summerhill Dr., Malvern, PA 19355. Telephone: (610) 695-4660. Fax: (610) 695-0856. E-mail: JulietteSc@ aol.com.
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