As part of its Palliative Care: Conversations Matter® campaign, NINR has created additional materials for families of children with serious illnesses. The materials include a resource on finding support, a series of family stories, and an at-a-glance fact sheet.
NINR designed the materials based on feedback the Institute collected from families of seriously ill children on what they needed related to pediatric palliative care information. The “Pediatric Palliative Care at a Glance” fact sheet provides a brief overview of pediatric palliative care. The “Finding Family Support” resource card outlines different types of support that families may want to access – things like sibling support, respite care and school resources. Families also want to hear about the experience of others. In “A Family’s Perspective,” four families share their experiences with pediatric palliative care and how the care they receive impacts their children and their lives.
“When families have a child with a serious illness, pediatric palliative care can be a key part of the care plan to improve quality of life for the child and the family,” said NINR Director Dr. Patricia A. Grady. “It is NINR’s hope that offering evidence-based resources for families will help them access pediatric palliative care services earlier in the course of their child’s illness.”
The Palliative Care: Conversations Matter® campaign aims to increase the use of palliative care for children with serious illness. The previous phase of the campaign offered materials for health care providers. The campaign’s current phase focuses on resources for patients and families which also includes a pediatric palliative care brochure in English and Spanish.
To download free copies of the materials and learn more about the Palliative Care: Conversations Matter® campaign, visit www.ninr.nih.gov/conversationsmatter or call 301-496-0207.