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Recommended Domains, Goals and Sample Quality
Indicators (view & print)
This draft document recommends quality domains for family-centered
pediatric palliative care along with related quality indicators.
Six domains were identified spanning 9 goals and 41 quality indicators
for determining progress toward the goals.
Families as Educators: Guidance for Implementation (view & print)
Throughout its history, the IPPC project has integrated family members in several ways, including in the education of clinicians. The innovative design for its educational retreats, through the “Families as Educators” component, consciously incorporated a significant number of family members, selected to participate as co-teachers and co-learners along with health care professionals. This document provides practical guidance to help other institutions both understand the model and adapt it to their own settings of care. The “Families as Educators” component of IPPC was generously supported by four years of funding from the Kenneth B. Schwartz Center.
IPPC's Pediatric Palliative Care Institutional
Self-Assessment Tool (ISAT)
Based on the analysis of domains, goals and quality indicators
presented in the Domains document, IPPC co-investigators and EDC
staff developed an institutional assessment tool to assist organizations
in assessing their status on issues related to family-centered palliative
care for children with life-threatening illnesses. The purpose of
this instrument is to serve as a catalyst for discussion and planning. The ISAT is divided into two components; a hospital administrative
form and a unit level form. The draft ISAT has undergone three phases of content validity refinement and is currently being field-tested in our seven participating hospital sites.
- Hospital Administrative Form (view & print)
This component is designed to be filled out by a person in an administrative position in the hospital who is able to answer questions pertinent to hospital-wide issues and policies.
- Unit Level Form (view & print)
This component is designed to be filled out by a representative of each local
unit to be surveyed within the hospital (i.e., NICU, PICU, Oncology,
IPPC Quality Improvement