The Unique Needs of Families Caring for Seriously Ill Children

  • 12 May 2020
  • 2:00 PM - 3:30 PM
  • NAGC Webinar


Registration is closed

2:00 p.m. Eastern | 11:00 a.m. Pacific (1.5 hours)

Presentation Description

While the death of a child is unimaginable, for nearly 45,000 families it is a reality every year. With the increasing number of children coping with chronic, complex and life-limiting conditions, it becomes more important we develop competencies and confidence in supporting bereaved parents and siblings. During this webinar, we will review key opportunities from time of diagnosis through the illness experience and into bereavement support that can help promote the healing and health of a family- and their community- following the death of a child. While it can be very difficult to shift “cure” to “care”, teams can develop skill sets that focus on optimizing the quality of life, evaluating the physical, emotional, social, developmental and spiritual needs of a family caring for a seriously ill child. We will highlight an interdisciplinary approach to supporting families through anticipatory grief, redefining hope, and the importance of meaning-making and legacy work.

About the Presenters

Annie Zisk is a Certified Child Life Specialist who currently works in the Pediatric Intensive Care Unit (PICU) at Children's Hospital of Philadelphia (CHOP). In this role, she provides comprehensive developmental and psychosocial support to critically ill children, their siblings, and their families. Prior to this role, she completed a psychosocial fellowship in pediatric hospice and palliative care with the Pediatric Advanced Care Team (PACT) at CHOP and her child life training at Johns Hopkins Children's Center in Baltimore, MD. She holds a specific interest in Patient-and Family-centered care, having completed an internship with the Institute for Patient-and Family-Centered Care in Bethesda, MD. Annie holds degrees in Psychology and Art & Design from the University of Michigan.


Kristin James, LCPC, currently coordinates the Greater Illinois Pediatric Palliative Care Coalition and Child Loss Coalition of Chicago.  She has specialized in working with families coping with illness, trauma and loss for over twenty five years. Kristin has provided clinical consultation and extensive training, advocacy and education to medical teams, community agencies, and school systems throughout the Chicagoland area. She is an experienced clinician and has provided individual, family, and group counseling. Kristin developed a benchmarked program for Pediatric Bereavement Care at Lurie Children's Hospital/Children's Memorial Hospital and is nationally recognized as an expert in grieving children and bereaved parents. She has also participated in and published numerous research studies.  Ms. James received her Masters in counseling from Loyola University. 



At the end of this webinar, participants will be able to:

1) Identify the unique psychological, social, developmental and spiritual needs of a seriously ill child and their family.
2) Describe how patient-and family-centered care and cultural humility honor individual values and decision-making in the care of seriously ill children and their families.
3) Identify at least three supportive techniques that promote healing and hope from the time of diagnosis through emotional journey into bereavement care for families caring for seriously ill children. 

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