Designated as both National Family Caregivers Month and National Hospice and Palliative Care Month, November is a time to reflect on the importance of these issues and their impact on our nation’s health and wellbeing.
NINR provides support for research and initiatives focused on family caregivers, hospice, and palliative care. Nursing science is unique in that our research extends beyond patients to include family members and caregivers as well. Nursing science also addresses pain, symptom management, and quality of life—all of which reinforce the goals of hospice and palliative care.
Individuals are living longer with serious illnesses. Some diseases and disorders that were once thought of as life-threatening are now seen as chronic conditions. With this shift in disease management, as well as a growing senior population, it is more crucial than ever to promote research on caregiving, palliative care, and end-of-life care.
A recent survey found that approximately 43.5 million caregivers provided unpaid care to an adult or child in the last 12 months. Recognizing the vital role that these caregivers play in our healthcare system, NINR recently hosted “The Science of Caregiving: Bringing Voices Together.” At the summit, experts from across NIH and throughout the country explored the issues and challenges facing caregivers and the related science. You can watch videos of the summit to hear stories of the extraordinary strength of caregivers and the growing body of research that is supporting them.
In 2015, NINR and the National Center for Advancing Translational Sciences held the workshop, “The Spectrum of Caregiving and Palliative Care.” A paper I co-authored with NINR colleagues summarizes this workshop and discusses the importance of considering the needs of caregivers when treating patients with serious diseases, as well as the value of communicating the benefits of end-of-life and palliative care to patients and their families.
NINR helps address these needs with our palliative care resources – the brochure Palliative Care: The Relief You Need When You're Experiencing the Symptoms of Serious Illness, available in English and Spanish, as well as a pediatric palliative care campaign, Palliative Care: Conversations Matter®.
This evidence-based communications campaign offers resources for health care providers, patients, and their families. The materials are available in both English and Spanish and include a pediatric palliative care brochure, a resource on finding support, a series of family stories, a customizable patient tear-off pad, a series of videos, and an at-a-glance fact sheet.
As we mark National Family Caregivers Month and National Hospice and Palliative Care Month, it is a perfect time to not only reflect on the work that has been done, but more importantly, to look ahead to determine how we can further support patients and those who care for them. I applaud the dedication of family caregivers and the remarkable work by nurse scientists to broaden palliative and end-of-life care research and research on caregiving.
National Institute of Nursing Research
National Institutes of Health