It can be hard for health care professionals to talk about palliative care with their patients—particularly with children. Many patients and their families have never heard of palliative care, and they are not aware that it can give them extra support in dealing with a serious illness. This is especially true when talking about palliative care for children and teens.
In January 2014, the National Institute of Nursing Research (NINR), part of the National Institutes of Health, launched Palliative Care: Conversations MatterTM, an evidence-based communications campaign to increase awareness of and improve communications around pediatric palliative care. The campaign includes materials such as videos, tear-off pads, resource cards, fact sheets, a provider toolkit, and brochures for health care providers and for families with seriously ill children.
The materials are designed to assist health care providers with starting and continuing conversations about pediatric palliative care with their patients and patients’ families. The materials for parents and families help raise awareness and empower families to begin a dialogue with health care providers.
To develop the Palliative Care: Conversations MatterTM 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. In addition to extensive formative research, we pilot tested the health care provider campaign materials for nine months in two health care systems, evaluated the provider materials in three hospital systems and did a national survey of parents of seriously ill children to measure campaign awareness.
We invite you to share with your colleagues, your patients, and your friends and families, the palliative care resources we have. We hope to improve the quality of life for those with serious illnesses, as well as their families and caregivers.