Research Agenda Needed to More Fully Elucidate the Cancer Caregivers' Experience

American Cancer Society
Tuesday, 26 June 2001

Although changes in the health care system have shifted much of cancer care from the in-patient arena to the outpatient and home setting, to date, the oncology care system has not fully incorporated "family care" for patients at home. While this shift has translated into increased family involvement in day-to-day care, there are few documented, effective strategies to guide family members caring for patients with advanced cancer.

The cover article of the July/August 2001 issue of CA-A Cancer Journal for Clinicians calls for a research agenda to more fully elucidate the cancer caregiver's experience throughout the illness and treatment trajectory, and identify the means to effecting positive outcomes for people with cancer, their family caregiver, and the health care system.

"The absence of strategies persists despite the fact that burden and distress on family caregivers has been studied since the early 1980s," the authors, Barbara Given, RN, PhD, FAAN; Charles Given, PhD; and Sharon Kozachik, RN, MSN, write. "Most research reflects family caregivers' abilities to help patients through the early phases of diagnosis and initial treatment. While there is considerable literature on the demands faced by family caregivers at the end of the patients' lives, few descriptions of the actual care requirements for patients with advanced and recurrent disease exist."

The care provided by family members will have a significant effect both on costs to the health care system and to families who may withdraw from the labor force to provide care. "The health care system can facilitate positive outcomes by embracing the family caregiver as a partner in the health care team, providing instruction and guidance to the caregiver as he/she assumes this role, and evaluating the home care situation," the authors write.

"Research to date has only scratched the surface of testing interventions that meet the needs of the cancer caregiver. Helping family members learn how to prioritize and manage problems, and work collaboratively with the health care system is important."

This issue of CA also includes a comprehensive article and CME feature on another important quality of life topic-management of treatment-related nausea, vomiting, and retching (NVR). Nausea and vomiting "are the most frequently reported adverse effects of antineoplastic chemotherapy and significantly affect patients' daily functioning, quality of life, and compliance with therapy," the authors, Verna Rhodes, EdS and Roxanne McDaniel, PhD report. The prevalence of nausea and vomiting among patients receiving chemotherapy is about 80%, and is closer to 90% for some highly emetogenic chemotherapy regimens and among patients receiving abdominal radiotherapy. The article discusses the pathophysiology, assessment, and management (pharmacological and nonpharmacological) of nausea and vomiting.

CA-A Cancer Journal for Clinicians, published for the American Cancer Society by Lippincott Williams & Wilkins, is the most widely circulated cancer journal in the world. It appears six times a year and publishes articles, usually of a review nature, on all aspects of cancer detection, diagnosis, treatment, and prevention.

A copy of the July/August issue is enclosed. For an interview with any of the authors or an American Cancer Society authority on any of these or other topics, please contact Joann Schellenbach at 212-382-2169. P.S. The CA Web site can be accessed via the newly redesigned American Cancer Society Web site, www.cancer.org, where it will continue to feature free, full-text versions of all articles that have been published since 1996.

The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy, and service. Lippincott Williams & Wilkins, Inc., is a global publisher of medical, nursing, and allied health information resources in book, journal, looseleaf, and electronic media formats. The company is a unit of Wolters Kluwer International Health & Science, a group of leading publishing companies offering specialized publications and software in medicine, nursing, pharmacy, science, and related areas.

For more information, or to contact American Cancer Society, see their website at: www.cancer.org