Pediatric Palliative Care: A Personal StoryThis video shares the story of a pediatric neuroblastoma patient and her family. Video length: 3 min, 58 sec.

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For Immediate Release: Wednesday, January 8, 2014

NIH makes palliative care more attainable for pediatric patients and their families

New Palliative Care: Conversations Matter campaign helps ensure children with serious illnesses and their families get supportive care

A campaign just launched by the National Institute of Nursing Research (NINR) aims to increase the use of palliative care — comprehensive treatment of the discomfort, symptoms, and stress of serious illness — for children with serious illness.

Palliative care 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.

Research has shown that pediatric palliative care services may also increase overall satisfaction with care for patients and their families. Yet, many health care providers hesitate to recommend palliative care for their youngest patients, and parents and caregivers are often unaware of its benefits.

“Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting,” said Dr. Patricia A. Grady, NINR director. “While it may not be an easy conversation, recommending palliative care to patients and families earlycan improve patient experiences with care. We hope this campaign and its resources will help ensure that palliative care is considered for every child and family navigating a serious illness.”

To develop the Palliative Care: Conversations Matter campaign NINR, a component of the National Institutes of Health, brought together parents and palliative care clinicians, scientists, and professionals to give their input and expertise on what they felt was needed in the field.

The campaign emphasizes that palliative care works along with other treatments to enhance quality of life for children of any age living with a broad range of serious illnesses. In particular, the campaign strives to break the common association between palliative care and hospice care, stressing that palliative care is appropriate throughout illness — not only at the end of life.

The campaign’s evidence-based materials are designed to help providers initiate palliative care conversations with pediatric patients and their families as soon as possible following diagnosis and to continue these discussions throughout the illness to meet changing needs of the patient and family.

The Palliative Care: Conversations Matter campaign resources include:

  • Informational video vignettes, which offer advice to providers about how to start palliative care discussions with patients and family members and features a mother’s perspective on palliative care after her daughter’s difficult diagnosis.
  • Customizable tear-off pads of patient education sheets, in English and Spanish, which encourage providers to have discussions with patients and their families by providing answers to common questions about palliative care and resources to support conversations.

To learn more about the Palliative Care: Conversations Matter campaign or to download or order campaign materials, visit http://www.ninr.nih.gov/conversationsmatter or call 301-496-0207.

About NINR: 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 http://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.

News Source : Pediatric Palliative Care: A Personal StoryThis video shares the story of a pediatric neuroblastoma patient and her family. Video length: 3 min, 58 sec.

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