The National Cancer Institute (NCI) defines cancer survivors as “people who have been diagnosed with cancer and the people in their lives who are affected by their diagnosis including family members, friends, and caregivers.”
New research is reinforcing the fact that healthcare providers should strive to make families of cancer patients central to all communication with and care surrounding the ill individuals. Unfortunately, however, family caregivers are still largely a peripheral consideration in the management of patients with cancer, and it may take years to reorient the healthcare system accordingly. With the aging of the North American population, this time lag may turn into a crisis, some experts say.
“Who’s going to be left holding the bag when the number of people with cancer doubles in the next 15 years and the stripped-down healthcare system can’t cope? Family, friends, and neighbors,” noted Michelle M. Lobchuk, RN, PhD, an associate professor of nursing at the University of Manitoba in Winnipeg. “I used to be an acute medicine and palliative care nurse, and from that experience I know that families want to be involved [in their loved ones’ care]. You can see it in their eyes; mostly they’re pleading for information on the disease and how to help the patient cope and survive.”
Positive effects of family-based cancer care
Another expert in this field, Barbara Given, PhD, RN, associate dean for research at Michigan State University College of Nursing in East Lansing, and her collaborators have been studying the importance of family involvement in oncology care for almost three decades. This information—along with that from other researchers active in the field—is gradually percolating throughout oncology.
Some of their most recent research demonstrates that caregivers are sensitive to patient symptoms but suggests that they can use help in improving their accuracy in gauging symptom severity (Chronic Illn. 2010;6:46-56). Her team has also demonstrated that nurse-delivered, over-the-telephone coping and communication support for aging patients with advanced cancer and their family members can significantly impact cancer outcomes (Cancer Nurs. 2009;32:193-202).
Their research indicates that a good, attentive family member responding to a treatment-related adverse event can affect the clinical outcomes for the patient. For example, if an infection isn’t noticed for 3 to 4 days, it can be life-threatening rather than something that could have been managed simply by administering antibiotics. “I think physicians are beginning to recognize that, and to understand that it’s good for their [performance based on] clinical outcome indicators used to measure quality of care,” Given said. “It’s also good for the patients because it improves their survival and reduces their burden of illness, and it’s good for the family because it means they do not [have to cope with the pa tient’s] unnecessary symptoms and problems.”
She points to the NCI’s new web page on family caregivers in cancer—which calls them “the foundation of the health care system in the United States”—as evidence that her research and that undertaken by others is making an impact (www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/healthprofessional).
At an invited presentation at this year’s American Society of Clinical Oncology annual meeting, Given summarized the knowledge she has accumulated in the field. She noted that families play a central role in taking care of people with cancer, encompassing such things as symptom management, provision of emotional support, coordination of care, acquisition and administration of medication, advocacy, and record keeping. Yet the role is often taken on abruptly with little or no guidance from the cancer care system.
“Caregivers need information and skills not only at the diagnosis or hospitalization but at all times,” Given stressed. “Health professionals, therefore, need to assess the care demands on the caregivers and provide them with the information they need to meet those de mands, taking into account such things as the expected duration and level of care and the caregivers’ availability and capability.”
Significant remaining gaps in recognizing importance of family
Lobchuk is conducting survey research that reveals just how deeply ingrained the attitude is, particularly among physicians, that families are peripheral to patient care.
As one physician told her, “I don’t go out of my way to contact or call in the family to include them in a discussion of colon cancer screening. If the loved one happens to be present at the time of a periodic health exam in the examining room, then they will be part of the discussion...It’s never something that I’m proactively doing.”
Lobchuk notes that making family central to all aspects of cancer management and survivorship will require a major mental shift in thinking and practice. “Not only will healthcare providers need to relinquish power and control to patients and families, but we’ll also need to reorient healthcare systems in how they support decision-making that is based on a merging of scientific evidence and what people uniquely expect of health and healthcare for themselves,” she said. “This will require skill and comfort in embracing the notion of partnerships that involve ambiguity, trade-offs, and negotiation.”
Other conclusions based on her research include:
- Value is added when family is included in the development of survivorship plans. “Shared goals foster following recommendations for care,” Lobchuk said.
- Physicians, nurses, and other healthcare practitioners are in positions to create awareness of the concept of partnership between family members, the patient, and the healthcare providers.
- Nurses in particular are committed to such relationship-centered care and are empathetic, which includes helping patients and families tell the stories of their suffering and emotions, and acknowledging the validity of those experiences.
She believes more research is needed to clearly determine how best family can be included in acute- and long-term cancer care, including survivorship.
FOCUSing on family involvement
Laurel L. Northouse, RN, PhD, of the University of Michigan School of Nursing, Ann Arbor, developed a family intervention nearly 10 years ago that integrates primary caregivers and other family members into a framework for optimal care of the cancer patient. The intervention is called FOCUS, which stands for family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. It addresses many of the needs identified by Lobchuk and Given.
The first component involves promoting open communication between the family members and the person affected by cancer, encouraging mutual support and teamwork, identifying family strengths, and helping the children in the family. The second component comprises practicing optimistic thinking, sharing fears and negative thoughts, and maintaining hope even in the face of death. Coping effectiveness includes encouraging healthy coping and lifestyle behaviors, whereas uncertainty reduction involves obtaining information about the disease process and treatments, learning to be assertive in dealing with healthcare professionals, and learning to live with uncertainty with respect to the course of the illness. Symptom management comprises assessing the symptoms experienced by patients and family members and teaching them self-care strategies.
Northouse and her colleagues originally created FOCUS for women with recurrent breast cancer and their family members (Oncol Nurs Forum. 2002;29: 1411-1419). Patients and family members in this initial study—which was funded by the American Cancer Society and involved three home-visit sessions and two phone sessions delivered by master’s-level nurses—reported high satisfaction with the FOCUS program.
They then adapted the FOCUS program for men with newly diagnosed, posttreatment, or advanced prostate cancer and their partners. They found in an NCI-supported randomized, clinical trial that at 4-month follow-up, intervention-targeted patients had less uncertainty and better communication with their partners than did control patients (Cancer. 2007;110:2809-2818). Their spouses reported higher quality of life, greater self-efficacy, better communication, and fewer negative feelings toward caregiving and toward their spouse’s emotional and physical state. Some of these effects were maintained at 8 and 12 months.
The materials Northouse and her team developed for the prostate cancer study can be downloaded free of charge (rtips.cancer.gov/rtips/programDetails.do?programId=102766).
Most recently, Northouse and her team have completed a randomized, controlled trial of the FOCUS intervention delivered in either three or six sessions to patients with advanced breast, prostate, colorectal, and lung cancers and their family caregivers.
“We were looking at the intervention dose—three versus six sessions—because we’re always trying to see if we can reduce the dose and hence make the program more cost-effective,” Northouse explained. “Our hypothesis is that people who report higher distress or who are at higher risk for distress would probably benefit more from the six- versus the three-session intervention, and that people receiving either dose would do better than controls.”
She said her team will present or publish the results sometime next year.
They are also moving FOCUS onto the web. “Our hope is that by putting it onto the Internet we can deliver it to more people and that we can do so at much lower cost. There will be a master’s-level, advanced practice nurse available to an swer users’ questions, but other than that nurse and the personnel needed to adapt FOCUS for the Net, there will be very few costs.”
Her team is conducting a pre- and postintervention study, with this pilot leading to a randomized, controlled trial.
Together, the different areas of research on family involvement in cancer care can doubtlessly bolster the quality of life of both cancer patients and their family members in the decades to come.