Primary Intensivist & Family Partnership: Advocating for Long Stay Patients in the ICU

Jul 10, 2023

Megan & Ross Maenius, parents of a child with chronic medical complexity, share their journey in the ICU. Dr. Erin Gordon discusses the importance of a 'primary' intensivist in pediatric care, improving communication, and supporting families. Topics include parental consequences, challenges in NICU, advocating for families, emotional reflections on loss, and nurturing connections in the ICU.

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Episode notes

Introduction

00:00 • 2min

Navigating Challenges in the NICU

01:33 • 21min

Advocating for Families in Medical Settings

22:08 • 18min

Emotional Reflections on Loss and Departure from the Hospital

40:01 • 2min

Nurturing Connections and Providing Support in ICU

41:33 • 8min

Navigating Grief and Anticipating Anniversaries

49:31 • 2min

Creating Comfort and Joy in the NICU Through Personal Items and Donations

51:04 • 3min

Advocacy and Partnership in Pediatric Intensive Care

54:07 • 12min

Building Trust and Advocacy in ICU Patient Care

01:05:41 • 3min

Megan & Ross Maenius are parents to Mila and patient advocates at Children's Medical Center Dallas. They have an incredible story to tell about their child's journey that may help the next time you are caring for a patient with chronic medical complexity in the pediatric ICU.

Erin Gordon, D.O. is an Associate Professor of Pediatrics at University of Texas Southwestern and an intensivist in the pediatric cardiac intensive care unit. Dr. Gordon is the medical director of the inpatient developmental care program and directly involved in creating an environment that fosters the growth and development of the congenital heart disease population, including parental mental health and resilience. Her passion for patient and family advocacy has led to her desire to bring a louder voice to the concept of a “primary” intensivist.

Learning objectives:

After listening to this episode, learners should be able to:

Recognize the parental consequences of children with complex chronic conditions and those requiring a prolonged ICU stay.
Recognize aspects of ICU care that limit effective communication between parents/caregivers and clinicians.
Discuss strategies to improve communication between parents/caregivers and clinicians including the role of a primary intensivist program.
Discuss ways that parents/caregivers and clinicians can partner together to improve the care provided to children in the ICU.

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Thank you for listening to this episode of PedsCrit. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. Check out http://www.pedscrit.com for detailed show notes. And visit @critpeds on twitter and @pedscrit on instagram for real time show updates.