Franciscan Helps Families Connect Parent Project

All parents who are currently serving as the primary caregiver for a child with a complex medical condition (including grandparents, foster parents, or legal guardians) are encouraged to enroll.

1. Enroll using the ENROLL HERE button at the bottom of the page.

2. Every three months, complete an online survey about the issues you encounter in providing medical care for your child. There will be five surveys over 15 months; each will take approximately 10-15 minutes to complete.

All information that you provide at enrollment or in any survey is anonymous. You can withdraw from the project at any time – but we hope that you don’t!

Enrolling in the project will give you:

• The opportunity to anonymously share your experiences about the most common barriers you face in providing medical care for your child.
• A platform to share ideas, knowledge and strategies with other parents.
• The chance to partner with healthcare providers to find solutions to the parent-identified issues, either through research or advocacy.
• A chance to make a difference in the lives of children with medical conditions and their families.
• The opportunity to give honest feedback without fear of jeopardizing relationships with healthcare providers.
• The chance to win a $100 Amazon gift card when you enroll and each time you complete a survey!

Coordinating care for children with complex medical conditions is an ongoing challenge for families, and requires coordination of care between many different providers.  Care is often fragmented, parents often feel isolated from one another, and parents’ experiences are seldom considered in solutions designed by the healthcare industry.  As a result, children with medical complexity are at risk for suboptimal outcomes, parents report poor satisfaction with the care their children receive, and the cost of care may increase.

Parents of children with complex medical conditions have a unique perspective on healthcare delivery and the systems of care available to their children. The responsibility for integrating care to ensure appropriate inpatient/outpatient, homecare, school, and primary and specialty care services is a tremendous challenge, which defaults to parents. However, parents have few recognized platforms to share their insights or concerns with other parents, and a limited voice with healthcare providers.