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, publically launched Palliative Care: Conversations Matter®, an evidence-based communications campaign to increase awareness of and improve communications around pediatric palliative care. The first phase of the campaign included materials designed to assist health care providers with starting and continuing conversations about pediatric palliative care with their patients and patients’ families. Three hospital systems completed an evaluation of the materials.
To develop the Palliative Care: Conversations Matter® 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, the Institute pilot tested the health care provider campaign materials for nine months in two health care systems to gather feedback from an interdisciplinary group of health care providers.
NINR is currently implementing a second phase of the campaign which focuses on patients, and their parents and families to raise awareness and empower families to begin a dialogue with health care providers.
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