Single Ventricle Journey: A Guide for Parents and Families
Co-developed by parents and clinicians, the purpose of the Guide is to offer support, information, and resources to families from birth to Fontan and beyond with HLHS.
Please feel free to print off (internally with an inkjet or laser printer) and use/distribute the Single Ventricle Guide. If you or your care center would like to have the guide professionally printed and bound, please contact email@example.com and we will provide the proper high-resolution, press-ready pdf files with crop marks and bleeds for you to give to your print vendor.
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, Postnatal Bulletin, Interstage Bulletin, Post Glenn Bulletin, Tube Feeding Bulletin, Raising a Toddler Bulletin.
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 firstname.lastname@example.org.
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.