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January 29, 2016
Campaign Offers Palliative Care Resources for Families

What types of resources do families of children with serious illnesses need? How can palliative care, comprehensive treatment of the discomfort, symptoms and stress of serious illness help them? What is most important to these families? These are questions that drove NINR to create evidence-based materials for parents and families who have a child living with a serious illness.

“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 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.”

Pediatric palliative care can take place in various settings including the hospital, at home or in outpatient clinics.
Pediatric palliative care can take place in various settings including the hospital, at home or in outpatient clinics.

NINR designed the materials—part of the Palliative Care: Conversations Matter campaign—based on feedback the institute collected from families of seriously ill children. The materials include a resource on finding support, a series of family stories and a fact sheet.

The “Pediatric Palliative Care at a Glance” fact sheet provides a brief overview of information on how such care works, who provides it and next steps families can take to get this type of care. The “Finding Family Support” resource card outlines different types of support that families may want to access—sibling support, respite care and school resources. Families also told NINR that they 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 affects their children and their lives. One parent noted that they “had no idea that the main goal of palliative care is assuring quality of life with a focus on living.” The materials can be used as stand-alone pieces or together to form a family information kit.

First launched in January 2014, the Palliative Care: Conversations Matter campaign aims to increase the use of such 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 includes a care brochure in English and Spanish and outreach items such as web banners, web badges, newsletter articles, an infographic and social media postings.

To download free copies of the materials and learn more about the campaign, visit www.ninr.nih.gov/conversationsmatter or call (301) 496-0207.

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