Integrating Palliative Aware Care for Caregivers of Children Living with Serious Medical Conditions

Children and families affected by serious medical conditions face considerable challenges in navigating the medical and psychosocial aspects of complex chronic illness management. They experience anticipatory grief, isolation, a loss of agency and control, a fear of being misunderstood by their child’s medical team, the burden of decision-making and a fear of decisional regret, all while seeking to be a ‘good parent’ to their child. Palliative medicine principles including an emphasis on serious illness communication and clarification of family values have significant positive impacts on families as they find their way through each step of their journey. While specialty pediatric palliative medicine is available at many institutions, there is also a need to improve palliative-aware skills of all clinicians and expand parent support resources. Freely available digital tools from Courageous Parents Network (CPN; CourageousParentsNetwork.Org) are well-suited to fill this gap, serving as concrete clinical resources for clinicians to help provide anticipatory guidance, as well as a source of perspective for families who care for children with serious medical conditions. These resources are collaboratively developed by clinicians -- who root the content in evidence and clinical expertise -- and parents who add human dimension and illuminate the content with their lived experience as caregivers to their child.

Co-led by two parent caregivers and a pediatric psychologist, Chrissy Salley, Ph.D., CPN’s Director of Clinician Engagement & Outreach, this session will begin with a brief overview of the invisible psychosocial impact of pediatric illness on parent caregivers and the vital role of primary palliative care to fortify them. It will transition to a demonstration of CourageousParentsNework.org, including the Clinician/Educator Portal. Participants will then be divided into 3 breakout rooms (or more if needed), each focusing on a different case. In each group, participants will consider the needs of the child and parents, how best to clinically meet those needs, and how to incorporate the Courageous Parents Network resources into communications and care. These resources will be utilized to help answer 3 key questions about the case. The session will conclude with the participants reconvening to share their primary takeaways and ask questions.

This session addresses the summit theme by demonstrating how parent engagement and collaboration for resource and program design engages both caregivers and clinicians as true collaborators in the shared enterprise to provide loving care to children with medical complexity.

Learning objectives:
- As a result of this session, participants will be able to:
o Improve awareness of the patient and family experience of caring for a child with a serious medical condition
o Provide meaningful and patient-centered anticipatory guidance to families navigating both medical and psychosocial challenges related to disease
o Navigate novel tools to support serious illness communication