By Leslie A. Whitlinger
The stories are heartbreaking: A 5-year-old’s leg had to be amputated above the knee due to bone cancer. A baby got tangled in curtain cords and nearly strangled to death. An infant suffered a stroke, followed by the discovery of a brain tumor, followed by a rare blood disorder.
The litany of childhood catastrophes experienced by members of Georgetown’s Pediatric Parent Advisory Board (PAB) is as varied as the individuals themselves, but they all share two things in common: their children were gravely ill and needed the highest-quality care available. And they all wanted to ease the ordeal of childhood hospitalization for other pediatric patients and parents.
These parents were in the right place at the right time.
Literally a “Hospital for Children” within one of the nation’s best academic medical centers, Georgetown’s Pediatric Inpatient Services boasts a team of nationally and internationally known specialists and surgeons, treating a wide range of conditions and attracting patients from around the world. Three distinct pediatric inpatient units provide care for children suffering from injuries or chronic disease like asthma or cerebral palsy; for those awaiting or recuperating from organ transplants; and for immunosuppressed cancer patients and others who may require life support. All told, Georgetown can accommodate 50 children along with an additional 44 beds in the Neonatal Intensive Care Unit.
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| The PEDIATRIC PARENT Advisory Board (Standing left to right) Erika Bugaj, MSW; Linda Jung Kim, Child Life Specialist; Lori Jones; Mira Saxena; Dana Adamson, RN; Gabriel Hauser, MD; Marilyn Eichner; Patty Lubin; Carrie Jenks; Travis Hobart, MD; Amy Weiss, MD (Seated left to right) Terri Tomoff; Alice Pengra, RN; Kyra Cheremeteff, PAB Chair; Shannon Rohrer-Phillips; Gregory Billings (Not pictured) Tom Eichner; Carlton Jones; Stefanie Sanders Levy; Rachael Grove; Kris Taylor; Aziza Shad, MD; Tamara Katy, MD; Gail Chisholm, Patient and Physician Advocacy; Bommy Hong, MD; Carrie Potoff, MSW; Sharon Graham, Chaplain. |
Yet in 2002 — despite the most advanced technologies, expertise and a compassionate staff — Gabriel J. Hauser, MD, director of the Pediatric Intensive Care Unit (PICU), felt something was missing: a more familycentered approach.
“I firmly believe that parents and other family members play a crucial role in the care of hospitalized children,” Dr. Hauser says. “To help us incorporate that philosophy, we began talking to parents who had experienced firsthand what it’s like to have a child in the hospital for weeks and even months on end.”
Thus was born the Pediatric Parent Advisory Board (PAB). Now in its seventh year, PAB is comprised of families whose seriously sick children have been hospitalized at Georgetown, and an equal number of pediatric professionals. The result is a working partnership, united in its commitment to the principles of staff-parent-patient communication, collaboration in care decisions and consideration of childand family-perspectives to support the development of policies, procedures and the patient care environment.
PAB founding member and current chair Kyra Cheremeteff, says, “Every parent on this board has been far, far removed from his or her ‘comfort zone,’ and dealt with unthinkable diagnoses and decisions that must be made for the sake of their children. We all want to use what we have learned to help enhance care and meet the unique needs of hospitalized children and their families.”
Shannon Rohrer-Phillips, a PAB member since 2003, has been on both sides of the bed. Formerly a pediatric social worker at Georgetown, she became an in-patient on the hospital’s high-risk maternal-fetal (perinatal) unit during her two pregnancies and, subsequently, the mother of two NICU “preemies.”
“From my dual points of view, the board has made a huge difference,” she says. “Having a hospitalized child, especially long term, stresses every aspect of your life: marriage, finances, work, school, your other children. Anything that can ease your day-to-day responsibilities, immerse you in your child’s care and recovery, and relieve the tedium of hospitalization for both parent and child is a blessing. PAB has done that.”
Today, evidence of the PAB is everywhere at Georgetown. One of its first recommendations was to extend visitation to 24/7 so that parents could spend the night with their kids. As a result, all the pediatric units feature cozy cots or pullout beds, along with a washer and dryer in the parents’ lounge. Another innovation was the weekly “Family Hours,” during which PAB members and friends contribute home-cooked or restaurant meals to the pediatric units, providing a respite from institutional food and a chance for parents to get together with others who are undergoing similar experiences. Most recently, the board was the driving force behind the renovation of the patient lounge, assuring that it is joyful, bright and well stocked with supplies and other helpful diversions. The PAB has advocated for the extension of child life services into all aspects of the hospital and the installation of wireless technology to allow long-term hospitalized kids stay on top of their studies.
Perhaps one of its most lasting contributions is formally sharing personal experiences with incoming residents and nurses, helping to orient them to the cornerstones of familycentered care: dignity and respect, information sharing, participation and collaboration between professional staff and parents, every step of the way. The objective, says another PAB member, is to help “great health care providers become great caregivers.” Dr. Hauser commends PAB for its dedication and achievements, a sentiment echoed by many, including Rohrer-Phillips.
“When I worked at Georgetown, I was privileged to be part of a team that saves lives every day,” she says. “Then the tables turned, and Georgetown saved my life and the lives of my children. I’d do anything for this hospital and am glad to have this opportunity to help.”
The PAB counts on community support to do its work. If you’d like to help, please visit the Website at http://www.georgetownuniversityhospital.org and use the search function to find “child life wish list” or contact Linda Kim, Child Life Specialist, at LMJ4@gunet.georgetown.edu, or 202.444.3037 for 10 more information
