October 2000 Education Development Center
Newton, MA
Enhancing Family-centered Care for Children Living with
Life-threatening Conditions
The goal of this project is to enable hospitals to provide children living
with life-threatening illness and their families the quality of care necessary
to support their physical, emotional and spiritual well-being. The Education
Development Center (EDC) will develop educational resources that focus on improving
the care provided to children and families by changing the delivery of healthcare
services so that they are family-centered. To ensure the efficacy of the materials,
six of the nations leading childrens hospitals will pilot-test them
and measure progress toward realizing new quality indicators for family-centered
pediatric palliative care. EDC will work collaboratively with the National Association
of Childrens Hospitals and Related Institutions, the Society of Pediatric
Nurses, and the New York Academy of Medicine, each of which has agreed to cosponsor
the project. These cosponsors will keep their members informed of the projects
progress as a means of generating interest in the project materials and in the
National Showcase Conference that will be the culmination of this phase of the
quality improvement effort. At the conference, the six pilot projects will present
their work to colleagues in other healthcare facilities as a means of encouraging
those colleagues to replicate the pilot sites efforts.