Parent and Family Resources

New!  Parent's Guides to HLHS

Our Patient and Family Support Learning Lab sponsors a network of parents, clinicians, and researchers who aim to improve HLHS patient and family support from diagnosis through the first year of life.  One of our first 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

A survey of Network Ceners conducted in January 2018 assessed the bulletins' use as an intervention to educate and support families.  The survey indicated a large number of Centers are either using or plan to use these bulletins.  For example, 14 centers (or 34%) plan to test using the Prenatal Bulletin in the next 1-2 months and 16 Centers are in some stage of actively using it in the form of testing, implementing or reliably using it to educate famlies.

Furthermore, Centers shared some feedback about these tools:

  • We really love these bulletins and think they will be a great help to families.  Thank you!
  • We have a new inpatient cardiology nurse.  We will be establishing a new routine of her providing bulletins to postnatal dx, interstage, and Glenn.
  • Hoping to incorporate this into our prenatal and postnatal care plans. 

Overall, it looks like Centers are finding these helpful, and we hope you find these helpful too.  Please let us know if you have any feedback via info@npcqic.org.

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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.