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NIH Awards $1.7 Million Grant to Children's Center for Children with Special Needs and UW School of Nursing

December 16, 2003

Seattle, Wash.: December 16, 2003 – Children's Hospital's Center for Children with Special Needs, in collaboration with the University of Washington School of Nursing, recently received a $1.7 million grant from the National Institutes of Health (NIH) Agency for Healthcare Research and Quality. This is the largest grant ever received for a Children's Hospital and UW School of Nursing joint project.

Award Affirms Children's Focus on Family-Centered Care

Seattle, Wash.: December 16, 2003 – Children's Hospital's Center for Children with Special Needs, in collaboration with the University of Washington School of Nursing, recently received a $1.7 million grant from the National Institutes of Health (NIH) Agency for Healthcare Research and Quality. This is the largest grant ever received for a Children's Hospital and UW School of Nursing joint project.

The funds from the grant will be used to develop and trial a seven-week class for parents of children with chronic illnesses based on a successful model for adults designed by the Stanford Patient Education Research Center. The four-year project will provide information, resources and focused discussions aimed at strengthening parents' abilities to manage the complexities of childhood chronic illness. Parents were instrumental in developing and creating grant ideas and will serve in co-investigator and consultant roles on the project.

Gail Kieckhefer, associate professor at the UW School of Nursing, serves as principal investigator and Nanci Villareale, co-director of Children's Center for Children with Special Needs, and Elizabeth Bennett, Children's health education manager, serve as co-investigators for the grant. Kieckhefer and University of Washington colleague Cristine Trahms, who serves as a curriculum expert on the project, have designed a shared management model to help parents involve their child in chronic illness care that will be integrated into the class.

The award affirms the integral role family-centered care plays in Children's Hospital and Regional Medical Center policies and programs, as outlined in the American Academy of Pediatrics' (AAP) recent statement on Family Centered Care and the Pediatrician's Role.

The AAP statement asserts that family-centered care can improve patient and family outcomes, increase patient and family satisfaction, build on child and family strengths, increase professional satisfaction, decrease health care costs, and lead to more effective use of health care resources. Family-centered care is based on the understanding that the family is the child's primary source of strength and support and that their perspectives and information are important in clinical decision-making.

"The philosophy of family-centered care runs deep at Children's, and it is reflected daily in the activities of the hospital," said John M. Neff, MD, director of the Center for Children With Special Needs at Children's Hospital. "This NIH grant recognizes the central role that families play in caring for children with special needs. Children's has a leading role in creating policies and programs that wholeheartedly reflect and support the AAP's endorsement of family-centered care."

Dr. Neff served as chairperson for the AAP Committee on Hospital Care, which joined with the AAP Institute for Family-Centered Care to create the statement. As other examples of family-centered care in action at Children's, Dr. Neff cites the Parent Support Program, which offers peer support to Washington state families of children with special health care needs or chronic health conditions. Children's Families-As-Teachers training program – which gives medical residents the opportunity to meet with families outside the hospital, hear their stories, talk openly about issues and challenges, and witness families' strengths and resilience – is another example.

Children's Family Advisory Council, which provides feedback on policies and issues affecting the family experience to hospital leadership, also plays an important role in achieving family-centered care by offering guidance for topics from facility design to specific clinical practices.

According to the AAP statement, family-centered care is grounded in the following principles:
1. Respecting each child and his or her family
2. Honoring racial, ethnic, cultural, and socioeconomic diversity and its effect on the family's experience and perception of care
3. Recognizing and building on the strengths of each child and family, even in difficult and challenging situations
4. Supporting and facilitating choice for the child and family about approaches to care and support
5. Ensuring flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each child and family
6. Sharing honest and unbiased information with families on an ongoing basis and in ways they find useful and affirming
7. Providing and/or ensuring formal and informal support (e.g., family to family support) for the child and parent(s) and/or guardian(s) during pregnancy, childbirth, infancy, childhood, adolescence, and young adulthood
8. Collaborating with families at all levels of health care, in the care of the individual child and in professional education, policy making, and program development
9. Empowering each child and family to discover their own strengths, build confidence, and make choices and decisions about their health.

To read the full text of the AAP statement on Family Centered Care and the Pediatrician's Role, visit AAP online. For more information about the Center for Children with Special Needs' NIH grant, visit the Center for Children With Special Needs' online.

About Seattle Children’s

Consistently ranked as one of the best children’s hospitals in the country by U.S. News & World Report, Seattle Children’s serves as the pediatric and adolescent academic medical referral center for the largest landmass of any children’s hospital in the country (Washington, Alaska, Montana and Idaho). For more than 100 years, Seattle Children’s has been delivering superior patient care while advancing new treatments through pediatric research. Seattle Children’s serves as the primary teaching, clinical and research site for the Department of Pediatrics at the University of Washington School of Medicine. The hospital works in partnership with Seattle Children’s Research Institute and Seattle Children’s Hospital Foundation. For more information, visit www.seattlechildrens.org or follow us on Twitter or Facebook.

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