HLHS Collaborative: January's Action Period Call

As promised, and in conjunction with HLHS heart dad, Trent Neely, the following is a summary from January's NPC-QIC Action Period Call:

January's call continued some robust conversations regarding Parent Engagement and Social Media. The discussion began with some changes in the data used to measure if centers are engaging and supporting parents - adding the key component of “Support." While it remains important to engage parents in the care of their children, the support that parents receive on their journey is vital as well. A number of centers commented on the importance of education and preparation, and how to avoid overwhelming parents with too much information.

The discussion then shifted to the use of social media and how parents and centers are using it to connect and communicate. They highlighted the connection that the NPC-QIC has made with Sisters by Heart and how they are working together to share information with both hospitals and parents. With the current divide between caregivers and parents in social media, this is a valuable bridge that is being built to provide a better online resource. Both organizations are utilizing Facebook and Twitter as social media outlets and encourage parents to join or follow them there. There was also a conversation about individual centers utilizing these resourses as well.   Click the hyperlinks if you'd like to follow NPC-QIC on Twitter or Facebook.  Sisters by Heart also has a Twitter and Facebook page if you've not located it yet.

The current project that the NPC-QIC is working on is care of HLHS patients through the interstage period. This work has been ongoing for years and will continue. They announced today that work will begin on Phase 2 and will center on Neonatal care. The focus will be on the hospitalization from birth through the Norwood surgery and recovery.

The NPC-QIC Learning Session will be held again in Cincinnati, Ohio on April 25th and 26th.  Parents interested in attending should email jcchdqi@cchmc.org.  Parents can also connect with their cardiac center's collaborative team for more information.
  
As a follow up to January's Call, feel free to comment on this blog post and share your experiences regarding how your cardiac care team engaged you, if they are active on social media outlets, and any advice you'd like to leave for the collaborative in this regard.  Many cardiologists and centers follow our blog, so share away!

As always, thank you Trent Neely, for creating a summary of the monthly action calls for all parents to see!