NIH Makes Palliative Care More Attainable for Pediatric Patients and Their Families


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A campaign “Palliative Care: Conversations Matter” recently launched by the National Institute of Nursing Research (NINR) aims to increase the use of palliative care 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.

Pediatric palliative care services may also increase overall satisfaction with care for patients and their families.

Palliative Care for Serious Illness

“Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting,” said Patricia A. Grady, PhD, RN, FAAN, NINR Director. “While it may not be an easy conversation, recommending palliative care to patients and families early can 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 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.

Evidence-Based Materials

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.

For more information, visit www.ninr.nih.gov and search “Palliative Care: Conversations Matter.”



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