NIH Releases Resources to Help Families Navigate Pediatric Palliative
May 5, 2016 03:12 PM
The National Institute of Nursing Research (NINR), part of the National Institutes of Health (NIH), has released new materials to help support families of seriously ill children. The materials include a fact sheet, a resource card for families, and a series of family stories. The materials are part of NINR’s Palliative Care: Conversations Matter campaign.
"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.
The materials include the following:
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, according to a press release, developed the materials based on feedback from parents of seriously ill children regarding “what types of information and resources would be most helpful to others facing the serious illness of a child.”
These materials are available on NINR's Palliative Care: Conversations Matter campaign site. They are also available on NINR's new Spanish-language campaign site.