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More About the Parent Advisory Council

Here is some general, and specific, information about our Parent Advisory Council. We are a 14 member committee who are parents of long term, chronically ill children, specifically selected by the medical community to work as the liaison between hospital and medical staff and the families and children.

We have been in existence since 1995. Our membership is not diagnosis specific and our children represent numerous specialties ie. Hematology, oncology, cardiology, nephrology, neurology, spina bifida, cystic fibrosis, etc. The full council meets monthly (the board of directors, more frequently). Unlike some other parent councils, we do not work for child life or social services. We work directly under and report directly to the chairman of pediatrics and the pediatric administrator with whom we meet monthly to keep updated.

We have been rather active in our few years. We started by writing and creating a series of handbooks which are distributed to all inpatient families by us:

• A Handbook for Families
• Creating a Medical History and Journal for Your Child
• Evaluating Health Information on the Internet
• Transitioning Your Chronic Child from Pediatric to Adult Care

The 5th and 6th in the series are due out in 2004...they will be:

• A Parents Guide to Intensive Care—Your Child in the NICU, PICU or Stepdown
• What About Me?...Siblings of the Chronically Ill Child

Although our brochures are peds specific, we have been contacted by adult and geriatric agencies for the Medical History and Journal Issue as they have found it useful in their services as well. We have, also, had articles published in Contemporary Pediatrics and Physicians Practice Digest.

Our parent advisory council is represented on all hospital committees regarding pediatrics such as: quality assurance, patient education, visitation policy, er restructuring, spiritual task force, children"s hospital steering committee, children"s hospital speakers bureau, and many others.

We, also, initiated or actively participated in committees which brought about our one-room schoolhouse, breast feeding room, pet therapy program and more. In addition, PAC created a resource library for inpatient families and a "light reading" library in the pediatric family lounge. We were, also, represented on the search and selection committees for the new chairman of Pediatrics (1999) and child life specialists. We provide advocacy for all families and sponsor a "family coffee hour" on the floor on a regular basis.

Our "family faculty", a sub-committee of PAC, offers presentations at numerous venues on the tenets of family centered care. Some of these venues are Syracuse university and other schools in the area, the college of nursing, strong memorial hospital, and regional child life conferences. We, also, regularly present at pediatric grand rounds at university hospital.

Some of the topics have been:

• "The Problem Parent: Perception vs. Misconception"
• "A Day in the Life...beyond the hospital walls for the chronically ill child and his family"
• "Discharge Planning Should Start—the Day of Admission"
• "The Role of the Primary Care Physician in the Care of the Chronic Child"

I"m sure you can tell we are very proud of our little group (all of whom are volunteers, by the way) and of University Hospital for their unwavering support and encouragement.—Susan Navagh

The parent advisory council can be contacted anytime at:

Phone: 315 432-0765
pac@twcny.rr.com

Parent Advisory Council
Upstate Medical University
Dept. of Pediatrics
5th floor
750 East Adams Street
Syracuse, NY 13210

Thank you for your time and interest...we look forward to hearing from you!