|NINR director Dr. Patricia Grady speaks about palliative care in campaign videos.
Dealing with the diagnosis of a serious illness in someone of any age is difficult. When that diagnosis is for a child, it is especially hard to handle for the patient and for the entire family. Palliative care—comprehensive treatment of the discomfort, symptoms and stress of serious illness—can reduce a child’s pain and help manage other distressing symptoms such as breathing difficulties, nausea and fatigue. It can also provide emotional support to both the child and family throughout the course of an illness.
Palliative care provides comfort during many illnesses in children, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. Palliative care is important for children at any age or stage of illness and can enhance a child’s quality of life.
Research has shown that pediatric palliative care services may also increase overall satisfaction with care for patients and their families. Yet, many health care providers hesitate to recommend palliative care for their youngest patients and parents and caregivers are often unaware of its benefits.
To address this need, the National Institute of Nursing Research launched Palliative Care: Conversations Matter, a campaign to raise awareness of and improve communications about pediatric palliative care. The campaign aims to increase the use of palliative care for children living with a serious illness.
“Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting,” said Dr. Patricia Grady, NINR director. “While it may not be an easy conversation, recommending palliative care to patients and families early can improve patient outcomes. We hope this campaign and its resources will help ensure that palliative care is considered for every child and family navigating a serious illness.”
To develop the campaign, NINR brought together parents and palliative care clinicians, scientists and professionals to give their input and expertise on what they felt was needed in the field.
The campaign emphasizes that palliative care works along with other treatments to enhance quality of life for children of any age living with a broad range of serious illnesses. Additionally, the campaign strives to break the common association between palliative care and hospice care, stressing that palliative care is appropriate throughout illness—not only at the end of life.
The campaign’s evidence-based materials are designed to help providers initiate palliative care conversations with pediatric patients and their families as soon as possible following diagnosis and to continue these discussions throughout the illness to meet changing needs of the patient and family.
Campaign resources include a series of informational video vignettes and customizable tear-off pads. The videos offer advice to providers about how to start palliative care discussions with patients and family members and feature a mother’s personal experience with palliative care after her daughter’s neuroblastoma diagnosis. The tear-off pads, available in both in English and Spanish, encourage providers to have discussions with patients and their families by providing answers to common questions about palliative care and customizable patient education sheets. The campaign will be evaluated over the next year at selected health systems across the country.
To learn more about the Palliative Care: Conversations Matter campaign or to get campaign materials, visit www.ninr.nih.gov/conversationsmatter.