Parent and Family Resources

NEW! Parent's Guide to Transparency

NPC-QIC continues to strive for transparency. A step in this journey includes Centers sharing seven measures during the October 2018 Learning Session.  The goal is for 80% of Centers to grant permission for their data to be identified for this session.  Ideally, October will serve as an opportunity to discuss how sharing transparently will drive quality improvement and how the network can move toward public transparency.

While these seven measures will not be reported externally/publicly, parents can still be involved:

  • Read-up on how the Network will report data transparently by using Funnel Plots.  Here is a tip sheet created by the Transparency Learning Lab for Clinicians and Families to understand how to use this data report.
  • Advocate.  Ask and promote your respective Center participating in October by agreeing to share transparently during the Learning Session.

Parent's Guides to HLHS

Our Family Cares (formerly Patient and Family Support) Learning Lab sponsors a network of parents, clinicians, and researchers who aim to improve HLHS patient and family support.  One of their projects was to develop Parent's Guides to HLHS.  The purpose of these guides is to offer support, information and resources to families during their first year with HLHS.  They have been co-developed by parents and clinicians and are in the format of a bulletin: Prenatal Bulletin pdfPostnatal Bulletin pdfInterstage Bulletin pdfPost Glenn Bulletin pdf.  We also have spanish versions of each availalable: Prenatal Bulletin (Spanish), Postnatal Bulletin (Spanish), Interstage Bulletin (Spanish), Post Glen Bulletin (Spanish)

NEW! Tube Feeding and Raising a Toddler

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NPC-QIC is proud to partner with Sisters By Heart (SBH) whose mission is to provide support, education, and empowerment to families affected by Hypoplastic Left Heart Syndrome.  This partnership has been vital for NPC-QIC and has catalyzed our efforts to co-produce health the HLHS community.  In addition to the resources below, please do peruse the resources page on the SBH website.