New NIH brochure highlights the value of palliative care for children living with serious illnesses

The National Institute of Nursing Research releases the publication as part of their Palliative Care: Conversations Matter campaign

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A new brochure from the National Institute of Nursing Research (NINR), a component of the National Institutes of Health, provides information about pediatric palliative care — a type of care that can reduce a child’s pain, help manage other distressing symptoms, and provide important emotional support to the child and family throughout the course of an illness.

A mother and son with a healthcare worker

The brochure answers questions that parents and families may have about pediatric palliative care.

Many patients and their families have never heard of palliative care or do not understand what it is. This is especially true when talking about palliative care for children and teens.

NINR’s brochure, Palliative Care for Children: Support for the Whole Family When Your Child Is Living with a Serious Illness, explains in easy-to-understand language what palliative care is, who it benefits, and how it works. Dealing with the diagnosis of a serious illness in a child is extremely difficult for the entire family. It is important that children and their families get the support and care that they need.

The brochure provides an overview of pediatric palliative care and answers questions that parents and families may have, such as:

How do I know if my child or family needs palliative care?
Does accepting palliative care mean our family is giving up on other treatments?
How can my child’s pain be managed?
How can our family get palliative care?

"Research has shown that palliative care offers many benefits, including enhancing quality of life for children, improvements in patient-provider communication, and satisfaction with overall care," noted Dr. Patricia A. Grady, NINR director.

The brochure is part of the Palliative Care: Conversations Mattercampaign. This NINR campaign aims to increase the use of palliative care for children with serious illness and is designed to roll out in phases. The previous phase of the campaign focused on health care providers and offered evidence-based materials to help them discuss palliative care with their pediatric patients and their families. The campaign’s current phase focuses on providing resources for patients and families to increase awareness of palliative care and empower them to have an open dialogue with health care providers.

"By providing this information in an easily accessible format, we hope this brochure will have a positive impact on the care of seriously ill pediatric patients and their families," said Dr. Grady.

To order or download a free copy of the brochure and learn more about the Palliative Care: Conversations Mattercampaign, visit www.ninr.nih.gov/conversationsmatter or call 301-496-0207. NINR is currently working to translate the brochure into Spanish.

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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