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Emotional Well-Being Screening Needed for Family Caregivers

Despite the outsized burden they carry, family caregivers only get screenings for emotional well-being around 16 percent of the time.

Fewer than one in five oncology practices screen family caregivers for signs of emotional distress despite the significant burden these informal caregivers carry during a loved one’s cancer journey, according to new data in the Journal of the National Cancer Institute.

The study, published by researchers from Wake Forest University Medical Center, showed serious gaps in family engagement and the family caregiver experience.

A cancer diagnosis can be devastating, the researchers said, carrying both physical and emotional tolls for patients.

Those emotional burdens can be felt by family and other informal caregivers, and that can ultimately impact the patient and their outcomes, according to the study’s co-principal investigator, Chandylen Nightingale, PhD.

“The role of the caregiver is incredibly important, but it’s also very challenging,” Nightingale, an assistant professor of social sciences and health policy at Wake Forest University School of Medicine, said in a statement. “Caregiver well-being is crucial because there is evidence to suggest that happy and healthy caregivers provide better support and care to their loved ones, potentially leading to better patient outcomes and even reduced burden for our health care systems.”

But while screening for emotional distress is common for cancer patients, that same kind of screening doesn’t always happen for family and informal caregivers, the researchers found.

Using data from the National Cancer Institute Community Oncology Research Program (NCORP), the researchers found that screening for emotional distress occurs for fewer than one in five family and informal caregivers.

While most (63 percent) oncology practices perform well in identifying and documenting a family caregiver—a key component of initiating family engagement and education—only 16 percent routinely screen caregivers for distress. This compares to the 92.5 percent who routinely screen patients (which, to be clear, is also an essential form of whole-person care).

And despite the existence of resources to help mitigate emotional distress for patients and caregivers alike, there isn’t equal access to those resources, the study furthered. While 90.6 percent of practices routinely screened and had at least one referral strategy for patients screening positive for emotional distress, only 12.6 percent could say the same for family caregivers.

To be clear, managing the mental and behavioral health needs of cancer patients is an essential part of providing whole-person oncology care. However, the researchers argued that caregiver well-being is likewise important. Caregivers often take on many of the financial and logistical burdens resulting from their loved one’s illness, and that is not to mention the fear or concern they have for their loved one’s well-being.

What’s more, caregivers are sometimes responsible for care management, medication management, patient-provider communication, and even making medical decisions when patients cannot do so for themselves. That can add stress to the family experience of care.

Nightingale and colleagues said screening family and informal caregivers for emotional distress does not need to be an added time burden for healthcare providers. The team described what they termed a “single-item distress thermometer” that asks caregivers to rate their emotional distress on a 10-point scale.

“We do need to better understand the unique barriers in community oncology settings that are preventing systematic screening for caregivers,” Nightingale said. “Our findings suggest that patient distress screening is widespread among community oncology clinics. However, very few are comprehensively engaging caregivers.”

Other experts from Wake Forest have indicated that healthcare providers could also adapt emotional distress screeners intended for patients and apply them to the caregiver experience.

“Defeating cancer is a team effort, and I commend Dr. Nightingale and the entire team for looking at such an important issue,” Ruben Mesa, MD, president of Atrium Health Levine Cancer, executive director of Wake Forest Baptist’s Comprehensive Cancer Center and vice dean for cancer programs at Wake Forest University School of Medicine, said in the press release.

“The hope is that we can leverage existing processes for patients and translate them to caregivers to make sure we are providing the best possible support for patients across the country who are facing cancer.”

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