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IPPC has developed several tools and resources that are available—free of charge—through this website. (Please read IPPC Curriculum Terms of Use). We encourage you to review and/or download these tools and to use them in your organization.

Continuity of care tools and resources
IPPC offers a range of tools and resources for use by regional community-based coalitions and networks working on improving continuity of care for children with life-threatening conditions and their families. These materials were developed in collaboration with the Gems of Care project in 2006-2008.

  • Continuity of care: definitions (view & print)
  • Components of comprehensive, coordinated pediatric palliative care (view & print)
  • Key elements and stages of development in pediatric palliative care (view & print)
  • Continuity assessment tool (view & print)
  • Key questions to guide your planning (view & print)

  • 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, HemOnc).

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