July 1998

The Nathan Cummings Foundation

 

July 1998

Education Development Center
Newton, MA

 

Enhancing Family-Centered Care for Children
Living with Life-Threatening Conditions

The current wave of national interest in improving the care of the dying has not yet focused to any great extent on the unique needs of dying children and their families. Research, education, and resources devoted to pediatric palliative care lag far behind those devoted to the care of dying adults. In response, the Education Developme nt Center has created this project which has the goal of improving pediatric palliative care by promoting family-centered approaches. This project will result in the development of a modularized Action Kit. The kit will include quality indicators and outcome measures, assessment tools, care maps, teaching cases and other educational tools and resources, and strategies to foster the institutional changes needed to support and sustain a family-centered ethic of pediatric palliative care. Parents of children with terminal illness will be involved in all aspects of project decision-making. This project marries the foundation's beginning- and end-of-life interests.