National Institute of Nursing Research provides palliative care support materials for patients, families

The National Institute of Nursing Research released new evidence-based materials to help support and care for family members of children with serious illnesses.

The materials were released as a part of the Palliative Care: Conversations Matter campaign, intended to increase awareness of and improve communication about pediatric palliative care options.

Patricia A. Grady

The campaign previously provided resources for health care providers. The new materials — available online in English and Spanish — are intended to answer questions that family members of pediatric patients may have.

Patricia A. Grady, PhD, director of the National Institute of Nursing Research, spoke with HemOnc Today about the campaign and why palliative care is integral to care for children and their family members.

Question: What is the purpose of the campaign?

Answer: The mission is to increase the number of pediatric palliative care conversations, as well as to increase the number of referrals to pediatric palliative care earlier during the treatment process, so the use of palliative care will really help patients and their families.

Q: What is the need for this type of campaign?

A: Palliative care truly is an important part of the care process for pediatric patients. It provides important support for families. A lot of people either are not aware of palliative care or do not understand it. It is our hope to shed light on this type of care.

Q: What is the potential impact of this campaign on pediatric patients and their families?

A: This is a unique type of care that addresses the symptoms and the stresses of serious illness. Palliative care focuses on quality of life for children and their families. It adds a layer of care and support to the existing health care team and the usual care received. We developed these new materials based on feedback from providers and parents with seriously ill children. We hope the type of information we learned will help both families and children during this difficult time.

Q: What is included in the new materials?

A: The new materials include a brochure, a fact sheet, a resource card and a series of family stories. The brochure explains in easy-to-understand language what palliative care is, who it benefits and how it works. The fact sheet provides a brief overview of care and answers the most common questions family members have. The resource card includes information about the types of support available to the family, such as sibling support, respite care and school resources. The series of family perspectives includes the stories of how the services families received impacted their children and their lives. These are real stories from real families.

Q: This campaign is designed to help patients with a variety of serious illnesses. In what specific ways can it help children with cancer and their families?

A: Studies show patients who receive palliative care report that it helps them better deal with pain and other distressing symptoms. It facilitates communication between health care providers and family members, which is particularly important during this stressful time. It also provides a level of emotional support beyond the care they would normally receive.

Q: Do you have any final thoughts for clinicians?

A: Talk with your pediatric patients and their families about palliative care early after diagnosis. Palliative care is available at any time, regardless of prognosis. It can help ease symptoms and enhance the quality of life for patients and their families. The National Institute of Nursing Research continues to evaluate the need for additional materials for pediatric palliative care. Palliative care research will guide the institute in developing additional programs and materials for patients and health care providers. – by Jennifer Southall

For more information:

Patricia A. Grady, PhD, can be reached at National Institute of Nursing Research, National Institutes of Health, 31 Center Drive, Room 5B10, Bethesda, MD 20892-2178; email: info@ninr.nih.gov.

Reference:

National Institute of Nursing Research. Palliative Care: Conversations Matter. Available at:

www.ninr.nih.gov/conversationsmatter. Accessed on June 29, 2016.

Disclosure: Grady reports no relevant financial disclosures.