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Improving care for the family and friends who care for cancer patients

Many individuals in the United States will receive a cancer diagnosis this year. Such a diagnosis is upsetting to those who receive it and overwhelming to those—relatives or friends—who love them. Cancer is rarely experienced in isolation.

Relatives and friends—who we call family caregivers—support their loved ones in many important ways: attending doctor visits, maintaining the household, sorting out insurance and billing, and even performing nursing tasks. Because of these and many other roles, caregivers commonly experience physical and emotional strain. They become the hidden patient—underscoring the impact cancer has on a caregiver’s own physical and emotional health. Not surprisingly, such decline can also negatively impact the patient.

Providing support to family caregivers can benefit everyone—caregivers, patients, and, very likely, the health care system. Yet, currently, caregivers often do not receive the support they need to care for the patient or themselves. Part of the problem is that it can be difficult to identify caregivers. Often, they do not easily identify themselves as caregivers, but rather see themselves as spouses, sisters, sons, or friends. Second, health care providers may not know the best way to support caregivers. They may even see their primary role as helping the patients. Third, hospital and physician practices typically do not have the resources to finance support to caregivers. Time to train or support a caregiver is not commonly covered by insurance. Fourth, there is limited availability of community or Internet resources for caregivers in cancer and they do not necessarily know how to seek support or have the time to do so.

Providing support to family caregivers can benefit everyone—caregivers, patients, and, very likely, the health care system.

The purpose of our article in Translational Behavioral Medicine was to share three existing evidence-based programs and tools that address the needs of caregivers for cancer patients. These include: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center, which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers’ needs.

The overarching goal of these programs is to support caregivers as recommended in health care and oncology to help ensure good caregiver and patient outcomes. These examples also highlight the importance of offering support through diverse channels—a National Cancer Institute-designated cancer center, the community, and the Internet—to overcome barriers to supporting caregivers. And, in doing so, this big tent of coverage has the potential to reach more caregivers in need.

Unfortunately, cancer will likely remain a reality in upcoming years, and be challenged by an expected silver tsunami, or growing number of older adults being diagnosed with cancer. Going forward, these efforts—and many others—must continue to be shared with the oncology community to improve care for caregivers in cancer. Efforts are also needed to assess implementation in diverse settings, among diverse groups (e.g., older or young-adult caregivers) and using diverse delivery modalities (e.g., hospital/practice-based, telephone, Internet).

The need to care for the family and friends who care for cancer patients is immediate and growing. To do so, our oncology community of clinicians, researchers, advocates, patients, and caregivers must prioritize working together to recognize, study, and debate the system and practices within which we work to improve outcomes for those in cancer, both patients and caregivers alike.

Featured image credit: Photo by benwhitephotography. CC0 via Unsplash.

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