PALO ALTO, Calif-- Lucile Packard Children's Hospital has expanded its well-developed family-centered care model to neonatology and kidney transplants as part of a hospital-wide effort to make such services available for every child with a chronic illness.

Called Partnerships Empowering Parents and Professionals (PEPP), this education, mentoring and research model has already seen success within the pediatric liver transplant service area for the past five years. Funded through the Lucile Packard Foundation for Children's Health, PEPP encourages parent-professional training to improve the health care experience for families with chronically ill children. The goal of the program is to make parents true partners in the health delivery process, rather than just recipients.

In PEPP training sessions, parents learn about their child's disease and treatment, and how it will affect their families. The training also answers questions such as how to prepare for the hospital; how to deal with house staff versus attending physicians; whom to talk to when you have a question; how to handle unexpected problems; and what issues may arise when you take your child home.

A 1998 pilot study at Packard of 25 families of children with liver disease awaiting transplant found that parents who had undergone PEPP training experienced significantly less stress, were less depressed, felt more confident in managing their child's health, felt more positive about the health care experience and were more knowledgeable about the skills needed to care for their child.

In the liver transplant area, where the PEPP program is well established, families with a newly diagnosed child are assigned a parent mentor and offered 10 hours of training. Parent mentors who have already been through the experience are trained to help new parents understand their child's diagnosis and treatment. They also help families cope with the stress of having a chronically ill child. "Parent mentors are a cultural guide between families and doctors," said Karen Wayman, director of Packard's Family Centered Care Program.

PEPP is a natural next step for Packard's pediatric kidney transplant program, which shares many similarities with the liver transplant program. In neonatology, the PEPP model will expand an already established family-centered care program, which currently includes informal parent support such as bedside visits and weekly parent get-togethers. "What we've done in liver transplants serves well for all chronic diseases," said Kenneth Cox, MD, chief of pediatric gastroenterology and medical director of the pediatric liver transplant program.

The PEPP parent-mentoring program focuses on parent-to-parent support, training paid parent mentors and providing them with ongoing supervision by a social worker. "Parent mentoring will be the backbone of an expanded program for us. It is a statement to our families on how invested we are in helping them in their time of crisis," said Joan Forte, patient care manager of the intermediate intensive care nursery.

Packard employs two parent mentors for pediatric liver transplants who work at the hospital every Monday and Thursday, as well as 14 others who work out of 16 outreach clinics in Sacramento; Fresno, Calif.; Portland, Ore.; Seattle; Oakland, Calif; and Honolulu. Prior to PEPP, families felt overwhelmed and isolated upon taking their child home after a liver transplant, explained Wayman. Now, she said, parents are part of a large network of families who have undergone a similar experience.


Lucile Salter Packard Children's Hospital at Stanford is a 240-bed hospital devoted entirely to the care of children and expectant mothers that is celebrating its tenth anniversary in 2001. Providing pediatric medical and surgical services associated with Stanford University Medical Center, Packard offers patients locally, regionally and nationally with the full range of health care programs and services - from preventive and routine care to the diagnosis and treatment of serious illness and injury. To learn more about Lucile Packard Children's Hospital, please visit our Web site at www.lpch.org.

###