Washington, DC - A new Spanish language publication, from the National Institute of Nursing Research (NINR), a component of the National Institutes of Health, aims to increase awareness of the benefits of pediatric palliative care among Hispanic families and caregivers. The brochure is part of NINR’s Palliative Care: Conversations Matter campaign.
Dealing with the symptoms of a serious illness is difficult. For the Hispanic population, which comprises 17 percent of the United States’ population, language and cultural barriers can add to the burden, making it even harder to find relief.
“Palliative care aims to improve quality of life for both patients and their families. It is important for health care providers to offer information on what palliative care is and the options surrounding their child’s care, so the family is properly equipped with the knowledge to make the best decisions for their child and entire family,” noted NINR Director Patricia A. Grady, Ph.D.
The new NINR publication, Cuidados paliativos para niños: Apoyo para toda la familia cuando su hijo vive con una enfermedad grave, is intended to help reduce a child’s pain, help manage other distressing symptoms, and provide important emotional support to the child and family throughout the course of an illness.
Cuidados paliativos para niños provides an overview of pediatric palliative care in Spanish and answers questions that parents and families may have, such as:
- How do I know if my child or family needs palliative care?
- Does accepting palliative care mean our family is giving up on other treatments?
- How can my child’s pain be managed?
- How can our family get palliative care?
In addition to the many benefits palliative care can provide, research has shown that palliative care can provide improvements in patient-provider communication, emotional support, and satisfaction with overall care.
To develop the Palliative Care: Conversations Matter campaign, NINR brought together families and pediatric palliative care clinicians, scientists, and professionals to identify what they felt was needed in the field.
The campaign, which offers materials for both health care providers and for patients and families, 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. In particular, 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.
To order or download a free copy of the brochure, visit www.ninr.nih.gov/conversationsmatter or call 301-496-0207. This publication is also available in English.