Cancer caregivers still have many unmet needs


  • Carrie Printz

Emotional distress of patients, caregivers are common concerns

When Cynthia Siegfried's husband was diagnosed with lung cancer 8 years ago, she found little available support for caregivers of cancer patients, so she wrote her own book about the topic.

What began as a “catharsis” evolved into a local and online support community coupled with speaking engagements. Cancer Journey—A Caregiver's View from the Passenger Seat talks about Siegfried's own experiences and offers insights into how she copes. As she continues to care for her husband, Jim, whose condition is terminal, she has discovered more resources.

“I think there is more focus on care giving in general because baby boomers are beginning to deal with Alzheimer's disease among their parents and themselves,” she says. “But the major difference with cancer is that while you almost always have time to prepare mentally and financially to care for an aging parent, cancer caregivers are often thrown into it when they've given no thought as to what they'd do if they had to care for a spouse or a loved one,” she says.

And many cancer caregivers still find little in the way of an organized support system, notes Barbara Given, PhD, associate dean for research for the College of Nursing at Michigan State University in East Lansing and an expert on caregiving issues. She was the lead author of a study entitled “Family Support in Advanced Cancer,” published in 2001 in CA:A Cancer Journal for Clinicians, which made a number of recommendations on how to improve support for caregivers.1

The article noted that although the oncology care system has shifted to include increased family involvement in day-to-day care, there are few documented strategies to guide families “despite the fact that burden and distress on family caregivers has been studied since the early 1980s.”

In the 10 years since the study was published, not much has changed, Dr. Given notes. “It's still not a part of a patient's plan of care because no one pays for it,” she says. “The only place caregiving is even mentioned in the Affordable Care Act is regarding dementia patients.”

Further confirming what she and many others have known for a long time, the American Cancer Society (ACS) Quality of Life Survey for Caregivers found that caregivers have many unmet needs.

The survey was designed to determine the quality of life of family members and close friends who are caring for cancer survivors. They were nominated to participate by survivors who were part of a longitudinal quality-of-life study, Cancer Survivors-I, which began in 2001. That study looked at the needs of survivors at 1 year,2 years, and 8 years after diagnosis. The patient samples were derived from 11 different cancer registries across the United States.

Key Points

  • Information for cancer caregivers is increasing, but they still have many unmet needs.

  • Among the highest unmet caregiver needs are assistance in helping their loved ones deal with the emotional distress of having cancer as an illness and assistance in helping caregivers themselves deal with their own emotional distress.

  • Caregiver education should be bundled as part of a cancer patient's care plan at discharge.

  • Researchers are developing Web-based interventions to support caregivers in dealing with the cancer patient's needs as well as their own.

  • Some caregivers want more acknowledgment by the medical community for the caregiver's role in the cancer treatment process.

Approximately 1600 caregivers—ranging in age from18 to 89 years—completed the survey at the same time intervals as the survivors. About 60% were women, the majority of whom were married. Between 20% and 25% were adult offspring of the cancer survivors, according to Rachel Spillers Cannady, a research analyst with the ACS who managed and designed the surveys.

Two years after diagnosis, surveyed caregivers reported unmet needs in the following top 5 areas:

  • 38% needed assistance to help their loved one deal with emotional distress (eg, anger, depression, fear);

  • 31% needed help to deal with their own emotional stress;

  • 27% needed help to deal with lifestyle changes;

  • 27%needed assistance to get information about the cancer with which their loved one was diagnosed; and

  • 26% needed help to talk to their loved one about their own concerns.

Five years after diagnosis, the top unmet need still was assistance in helping their loved one deal with emotional stress (21%). Additionally:

  • 12% needed help to understand medical and/or insurance coverage;

  • 12% needed help to deal with their own emotional distress;

  • 12% were concerned about having enough insurance coverage for their loved one; and

  • 12% were concerned about being satisfied with their relationship with their loved one.

Based on their study findings, researchers have published 16 reports (with others pending publication).2,3

In one report, “Gender Differences in Caregiving Stress Among Caregivers of Cancer Survivors,” researchers announced that male caregivers felt better about themselves as caregivers and also felt less stress than their female counterparts. Cannady attributes these findings to the concept that women often “take on the burden 10-fold,placing a lot of responsibility on themselves.”

Illustration 1.

While you almost always have time to prepare mentally and financially to care for an aging parent, cancer caregivers are often thrown into it when they've given no thought as to what they'd do if they had to care for a spouse or a loved one.—Cynthia Siegfried

Although the surveyed caregivers' socioeconomic status was higher than that of the average American in terms of education and affluence, they still experienced significant caregiver burdens, notes the study's principal investigator, Youngmee Kim, PhD, formerly with ACS and now associate professor of psychology at the University of Miami in Miami, Florida.

Dr. Kim says she would like to continue to follow the caregivers after 10 years because many of the signs of stress on their physical health may not actually appear until many years after their loved one's diagnosis.

She and colleagues are developing telephone or Web based behavioral interventions to help both survivors and caregivers to engage in healthy lifestyle choices. At the 8- year follow-up, for example, researchers found that only 1 in 3 caregivers met the recommended physical activity levels of 30 minutes of moderate to vigorous activity 5 or more days each week. Further, only 3 in 8 met recommended levels of 5 or more servings of fruit and vegetables each day.

“Many of the survivors and family members aren't always treating the cancer as a teachable moment,” Dr. Kim says. “We want to develop strategies to help them not only begin but to maintain healthy behaviors such as increasing fruit and vegetable consumption and physical activity, maintaining a healthy weight, and undergoing regular cancer screenings.”

The ACS has information for caregivers on its website and is currently piloting a program in Georgia and Maryland that provides a printed kit with detailed information for caregivers who contact the ACS National Call Center in those states.

ACS can put caregivers in touch with counselors and support groups in their community, but Cannady would like to see the organization have its own support system for caregivers. “We understand the importance of caregivers' impact on the health of the cancer survivor, and hopefully this year we'll begin to provide more information for them,” she says.

Dr. Given believes support and education for caregivers needs to be bundled as part of a cancer patient's discharge plan, just as many such programs are available for family members of stroke and cardiac patients.

She and colleagues developed such a toolkit as part of their previous studies, but it has not been widely adopted. She hopes to eventually see in-depth caregiver information provided on cancer center websites. In that regard, Dr. Given is currently working on a pilot study with Indiana University in Bloomington that is investigating a Web-based intervention for patient symptom management for caregivers. She and colleagues also are working on an intervention to aid caregivers with strategies for setting priorities, managing time, exercising, and dealing with depression.

Although support groups exist, many caregivers do not always have the time and energy to attend them, Dr. Given notes. A few major cancer centers have offered programs to caregivers, but most community cancer centers where the majority of cancer patients are treated do not have formal programs. “Our caregivers tell us their biggest concerns are having the right information, knowing how and with whom to communicate, and knowing how to manage their loved one's symptoms and side effects that don't go away when treatment is over,” she says.

In addition, providers have not been taught to integrate caregivers into planning or assessing patient quality of care, Dr. Given says. The latter is particularly important because untrained caregivers often are more prone to making mistakes in patient care than nurses in a hospital setting.

Siegfried adds, “I would like to see more physicians and medical personnel acknowledge the pain of the caregiver— frequently I feel like an intruder when I ask questions or try to be an advocate for my husband.” She urges physicians to realize that they are treating the entire family, not just the patient.

Having worked many years in the field, Dr. Given agrees. “We have to recognize that caregivers are essential health team members,” she says. “And until we do, patients will not get the best quality care.”