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NIH resources to help families navigate pediatric palliative care

As part of its Palliative Care: Conversations Matter campaign, the National Institute of Nursing Research (NINR) has created new materials for families of children with serious illnesses. The newly released materials include a fact sheet, a resource card to help families find support, and a series of family stories. The materials are now available in English and Spanish. NINR is part of the National Institutes of Health.

The Pediatric Palliative Care At-a-Glance Fact Sheet provides a brief overview of pediatric palliative care and answers some common questions that families may have. The Finding Family Support Resource Card includes information on the types of support available to families, like sibling support, respite care, and school resources. In A Family’s Perspective, four families shared their experiences with pediatric palliative care and how the services they received impacted their children and their lives.

NINR developed these materials with feedback from parents of seriously ill children. From these families, NINR learned what types of information and resources would be most helpful to others facing the serious illness of a child.

“Palliative care is often associated with end of life, making it difficult for patients and their families – and even for healthcare providers – to start conversations around the subject. However, palliative care can be incredibly helpful for patients and their families at any stage during an illness. We hope these materials will improve patient and family understanding of pediatric palliative care and facilitate discussion with healthcare teams,” said NINR Director Dr. Patricia A. Grady.

NINR’s Palliative Care: Conversations Matter campaign aims to raise awareness of and improve communications about pediatric palliative care. This evidence-based communications campaign offers materials for health care providers and for families that have children living with serious illnesses.

These new publications complement NINR’s existing campaign materials, which include the healthcare provider materials and a brochure for families that provides an overview of pediatric palliative care.

These materials are available on NINR’s Palliative Care: Conversations Matter campaign site at https://www.ninr.nih.gov/conversationsmatter and on NINR’s new Spanish-language campaign landing page at https://ninr.nih.gov/conversacionesvaliosas.