NINR’s Pediatric Palliative Care Available to Patients and Families

The National Institute of Nursing Research (NINR) recently launched a new public health awareness campaign—Palliative Care: Conversations Matter—with the goal of increasing understanding of the use of palliative care (comprehensive treatment of the discomfort, symptoms, and stress of serious illness) for children with serious illness.

Support, in all forms, can have an incredibly positive impact on patients as they are dealing with their disease symptoms, but often there is hesitation in recommending palliative care for children.

“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 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.”

Through evidence-based research, NINR brought together patients, providers, and families to analyze expectations and changing needs. 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 the NINR website or call 301-496-0207.

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About Heather Swift

Heather “Swifty” Swift has been Kicking mAss since 1998. At 28 she was diagnosed with ovarian cancer as a recently single mom with two small babies on her hip. After completing treatment with the thought that cancer was in her rear view mirror she worked, locally, as a volunteer for Ithaca Breast Cancer Alliance doing community outreach to be certain that no one faced cancer alone. In 2005, she had a secondary diagnosis of breast cancer and tested positive for the BRCA2 mutation, which only amped up her commitment to creating positive change and to becoming a strong and effective advocate for the young adult cancer community. Now, at age 42, Swifty, her partner, Brian, and her two teenage children work together locally, nationally and internationally to advocate for change. Swifty regularly meets with legislators to work towards tangible change in health care, legislation that addresses the needs of cancer patients, care-partners, and families. She works directly with clinicians, medical/nursing students, youth & college students, cancer support organizations and others to educate them about the special needs of young adults living with a cancer diagnosis. Swifty is passionate about providing support by connecting people living with cancer to resources, to other cancer survivors, and to mobilizing and training individuals and groups to find their inner advocate. Swifty currently works with a number of amazing, hand-selected organizations, which provide her with opportunities to educate, to advocate, and to change the conversation about cancer and to work to bring an end to the disease. A few include: LiveSTRONG, mAss Kickers, Imerman Angels, National Breast Cancer Coalition, Cancer Resource Center of the Finger Lakes, Dusty Showers & The Second Basemen, and Stupid Cancer. Swifty is an oncology nursing student in upstate New York, loves time with her family, paddling sports, and peanut butter. She is a Virgo, but not the really anal-retentive type. Her strange fascination with superheroes makes her popular in geek circles, but it can be endearing. Swifty will be riding a llama across Oregon in July of 2012 and really does believe we can achieve and end to cancer and in world peace. Motto: Never Give Up! Favorite quote: “Our own life has to be our message.” ― Thich Nhat Hanh

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