Given, Barbara A. PhD, RN, FAAN
Author Affiliation: College of Nursing, Michigan State University, East Lansing.
The author has no funding or conflicts of interest to disclose.
Correspondence: Barbara A. Given, PhD, RN, FAAN, College of Nursing, Michigan State University, 383 Bott Bldg, 1355 Bogue St, East Lansing, MI 48823 (firstname.lastname@example.org).
The role of family caregivers has been a concern to oncology nurses providing cancer care for several decades and for nurse researchers as well. Researchers have added to our knowledge about needs of family caregivers by examining caregiver coping, burden, and depression; caregiver roles and tasks of care; and hours of caregiving. Much of the existing research, including systematic reviews, focuses on patients younger than 65 years and their caregivers who are also younger than 65 years.1,2 Despite these research efforts, we have much to learn about what is supportive of caregivers of older cancer patients. We need to continue our advocacy and research efforts.
I am unable to find national strategic research priorities related to caregivers of the older cancer patient, or cancer patients in general. The Institute of Medicine (IOM) text “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs” only briefly mentions family caregivers.3 The National Cancer Policy Summit of 2011 recommended more standards for support of caregivers of cancer patients in only 1 brief statement.4 The recent IOM report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,5 presents a conceptual framework for quality cancer care, but this framework does not include the family. In the recommendations for elements of quality care, “the family” is not mentioned. There is a single reference to families in the section on “quality of care at the end of life.” There is a charge to the Committee on Improving the Quality of Cancer Care within this same document to address the challenges of an aging population. In this charge, there is a mention of “consider the growing need for informal caregiving.” Having so little attention to family caregivers in the IOM documents is a travesty. We have made little progress in getting this topic on the national research agendas, but we need to persevere.
By 2030, individuals 65 years or older will account for 70% of all cancer patients in the United States. Many of the older patients have a second cancer and multiple other chronic diseases and require ongoing and long-term care. These patients have disproportionately more emergency room, urgent care, physician, and hospital visits (many point-of-care transitions) than do younger cancer patients. Caregivers if available become the coordinators of care and are heavily involved in decisions and direct care—they need information and guidance. Incentives within the Affordable Care Act are linked to care outcomes that increasingly depend on supportive care at home. We need family care for this.
We need additional knowledge about caregivers in general and caregivers of older cancer patients specifically. We know little about what interventions are most effective on patient outcomes. We know little about the quality of the care provided by family caregivers. What do caregivers contribute to patient outcomes? Measures for “quality of care” provided by caregivers are needed. We need to study new models of cancer care that include family caregivers and focus on care coordination and quality improvement. How do family caregivers coordinate and communicate with the expanded network of providers needed for the older patients?
Communication effectiveness about patient response to treatment and the disease relies on the ability of the family caregiver to assess symptoms discerning between mild and severe responses in the patient’s conditions. Caregivers have no formal training, yet they are providing care that until recently was reserved for hospital care. Is it difficult for them to discern between what they can manage and what requires immediate attention? Research is needed to determine what interventions support caregivers’ efforts to make these judgments. How can electronic medical records and other electronic technologies support caregivers and prevent unnecessary health system use? Does the preparation of caregivers make a difference in treatment dose delays and dose reductions for the patients? This could affect treatment response and disease progression. These are a few areas of research where findings could support the caregivers.
Nurse researchers need to continue efforts and advocate for more research to provide the support for quality patient outcomes and to sustain the family caregivers to continue their care efforts.6 Reinhard et al7 said it well when they indicated that a healthcare system that relies on untrained and unpaid family members for care tasks but does not train them has lost sight of our mission of providing care to patients and their families. We need a clear call to action for more caregiver research to support those who care for our cancer patients. Nurse researchers need to continue to advocate and lead the way!
1. Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? an updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012; 26( 1): 7–22.
2. Northouse L, Katapodi MC, Song L, Zhang L, Mood MW. Interventions with caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010; 60( 5): 317–339.
3. National Research Council. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: The National Academies Press; 2008.
4. Patlak M, Nass SJ, Balogh E. The National Cancer Policy Summit: Opportunities and Challenges in Cancer Research and Care. Washington, DC: The National Academies Press; 2011.
5. Institute of Medicine, Levit L, Balogh E, Nass S, Ganz P. Delivering High-Quality Cancer Care Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press; 2013.
6. van Ryn M, Sanders S, Kahn K, et al. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?. Psychooncology. 2011; 20( 1): 44–52.
7. Reinhard SC, Levine C, Samis S. Home Alone: Family Caregivers Providing Complex Chronic Care, Washington, DC: AARP Public Policy Institute, 2012.