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.

“...palliative care can be incredibly helpful for patients and their families at any stage during an illness.”

—Dr. Patricia A. Grady, Director, NINR

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 athttps://www.ninr.nih.gov/conversationsmatter and on NINR’s new Spanish-language campaign landing page athttps://ninr.nih.gov/conversacionesvaliosas.

NINR supports basic and clinical research that develops the knowledge to build the scientific foundation for clinical practice, prevent disease and disability, manage and eliminate symptoms caused by illness, and enhance end-of-life and palliative care. For more information about NINR, visit the website at www.ninr.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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