Roadmap College Webinar Series Continues
The Roadmap Project's six-month series designed to address patient and family emotional health continued with Webinar #2 on June 9.
Roadmap College brings together 16 clinical teams from the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) and the Fontan Outcomes Network (FON). In the second webinar, teams discussed how to identify resources and make them available.
Guest speaker Stacey Lihn is a parent of a child with Hypoplastic Left Heart Syndrome, Founder and President of Sisters by Heart, and NPC-QIC and FON Executive Leadership Team member. Stacey shared about the importance of making peer-to-peer connections, which is a key part of Sisters by Heart's work.
Stacey said, "people gravitate toward peer support because of its humanizing effect on our challenging health care system. And we love that it provides that personal connection to better understand physical and emotional impacts of chronic illness and it is 100% patient-centered . . . peer-to-peer supports looks different for everyone, but that feeling of validation and understanding by someone who has walked in your shoes -- we learn from each other and gain tools to live healthier lives as parents, patients, and siblings."
Dr. Jill Plevinsky is a Pediatric Psychologist at Children's Hospital of Philadelphia and Founder of the Improve Care Now Patient Advisory Committee. Developing a guide for finding resources for patients, families, and clinical teams, Jill highlighted five steps to take to get started:
- Ask around for existing resources - you may not need to reinvent the wheel!
- Organize your resource guide by audience
- Include patient/parent partners in developing materials
- Consider how you can keep your list updated
- Test it out! And ask patients/and families if they were successful in using the resource
Learn more about how Roadmap can help you build a resource list below. Roadmap College continues with Webinar #3 later this month.
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