When someone has a serious illness, it can be overwhelming to know where to turn or what to do. NINR recognizes this and provides science-based palliative care information to support individuals, families, clinicians, and communities who are managing the symptoms of serious illnesses. November is a perfect time to call attention to this work as it is designated as National Family Caregivers Month and National Hospice and Palliative Care Month.
NINR’s “What is Palliative Care?” webpage discusses what palliative care is and provides answers to questions that patients and families may have such as:
- How can palliative care help you?
- Who is on a palliative care team?
- Will I have to give up my primary health care provider to receive palliative care?
Palliative care brochures and fact sheets are also available on NINR’s website and can be downloaded or ordered free of charge. NINR provides a suite of materials specifically related to pediatric palliative care, including a short video entitled, “Pediatric Palliative Care: A Personal Story.” In the video, a mother describes her family’s experience with palliative care after her daughter was diagnosed with neuroblastoma. She says that “Palliative care is the support mechanism that kept my sanity.”
NINR has also led the way in using arts-based palliative care interventions for pediatrics. As part of NIH’s Sound Health initiative, NINR funded a study of an active music engagement intervention for young children with acute lymphoblastic leukemia, as well as their parents. Sound Health is a partnership between the NIH and the John F. Kennedy Center for the Performing Arts, in association with the National Endowment for the Arts, to explore the brain’s relationship with music.
We encourage you to explore NINR’s palliative care resources and research efforts in end-of-life and palliative care science and share these with your colleagues, patients, friends and families.