“Continue on! Help families be heard by medical professionals, specialists, therapists, and those in influential political positions for advocacy for families... and outreach to universities to teach medical students about appropriate palliative care and family perspectives.”
From the CPN 2019-2020 Family Survey
We understand that this continues to be a stressful time. Please know that myself and the team at CPN think about you often and hope that you and your loved ones are feeling secure and well.
As we begin to transition to warmer weather and hopefully better days, I want to say a heartfelt THANK YOU to all of the CPN families that responded to our 2019-2020 Family Survey. As always, we learned a great deal from your input and your generous feedback. (We especially liked reading your comments. Thank you for taking time to write them. They stick!)
Here are some of the insights we gleaned from this Survey:
· ADVOCATING for your child remains families’ #1 priority. This is not a surprise, and is in fact the inspiration for everything that we do.
· Tied to this priority are two areas where CPN focuses much of our service and content
o Making decisions that work with your family’s values
o Effectively communicating goals and questions to your child’s medical team
· Finding ways to cope with fear and anxiety is also a top priority.
· And, tied to this priority are these areas where we offer you resources
o Connecting families to the perspectives of parents—and providers—who care for very sick children
o Tending to the relationship/marriage
o Support for siblings and extended family
· More than half of your families are receiving palliative care services. Educating and advocating for palliative care is key to our mission, and we are so happy that so many of you are benefiting from these services.
You also told us that you:
· Like to read CPN content. Thank you—we continue to develop and will soon publish more guides and Guided Pathways on topics that you and/or providers have suggested.
· Would like us to add content, some specific to diseases or issues and some more universal, all of which we are reviewing.
· Follow CPN on social media. We invite you to give us more feedback, and certainly to share our content so that others can learn about CPN.
· Want more videos! We’re definitely on that.
Through formal and informal conversations, we understand that you would value the ability not just to search CPN, but also to be able to reach out for a direct answer to a question, or suggestion of resources to pursue. So we want to offer that option to you.
Please: if you don’t have time to search, or you can’t remember where you found your favorite CPN resource, or can’t find something else you need or hope exists, reach out to us directly at firstname.lastname@example.org.
We pride ourselves on being responsive and someone on the team will get back to you as quickly as possible.
Thank you for reading and participating and being in touch.
With love and appreciation and my wishes that you and your loved ones remain safe and well,
Blyth & the team at Courageous Parents Network