Support Groups Address Loneliness of a Cancer Diagnosis for Patients, Caregivers

“(Cancer) is part of the loneliness epidemic in a very real and visceral way. But it doesn’t have to be,” Beth Blakey, executive director of Cancer Hope Network, said.

The recent declaration of a “loneliness epidemic” by the U.S. Surgeon General especially impacts patients with cancer and their caregivers, emphasizing the need for peer support to overcome what can be a time full of unknowns in one’s life.

According to the U.S. Surgeon General’s Advisory on the Healing Effects of Social Connection and Community, loneliness is defined as “a subjective distressing experience that results from perceived isolation or inadequate meaningful connections, where inadequate refers to the discrepancy or unmet need between an individual’s preferred and actual experience.”

Beth Blakey, executive director of Cancer Hope Network, told CURE® that although cancer is isolating and frightening, resources are available to provide emotional support, information and effective coping methods, all of which can potentially address the loneliness epidemic.

“(Cancer) is part of the loneliness epidemic in a very real and visceral way. But it doesn’t have to be,” Blakey said in an interview. “There are many pathways available for patients and caregivers who may be experiencing loneliness, who are going through cancer. And as part of the loneliness epidemic, one of those pathways is one-on-one peer support — talking with someone who’s been there — can make a cancer diagnosis, going through treatment, supporting a loved one or adjusting to life post-treatment maybe just a little bit easier.”

How Loneliness May Impact Outcomes

The loneliness a person experiences, whether they be a patient with cancer or a caregiver, may lead to depression, which can then result in poorer health outcomes. But a one-on-one peer support program, like the one Cancer Hope Network started, allows patients and caregivers to access care that combines both medical care and professional mental health services.

“It’s part of a whole person, patient-centered care approach,” Blakey said. “It empowers patients and their loved ones with hope. … There’s that experience, that vicarious experience, seeing someone who’s walked a similar path and is now living on the other side of active treatment, or an active diagnosis is incredibly powerful. It inspires hope in a very real and meaningful way. And it helps to address that depression, that loneliness that can lead to a negative health outcome.”

Loneliness can also be felt by caregivers and loved ones, so much so that it may be considered a “crisis,” Blakey said. This is due to the caregiver balancing many aspects of life such as careers and caring for an aging parent or young children, all while taking care of a patient with cancer, who may be undergoing treatments either at home or at a facility.

“The stress is incredible, and it's created a crisis,” Blakey said. “Knowing that there's somebody there who can relate, who can provide practical advice and let you know that you're not alone is a really, really important tool in helping the person that you're helping. It’s that concept of putting your oxygen mask on first so that you can help the person next to you when you're on an airplane. It's the same thing for a caregiver; you have to be able to take care of yourself, and you have to be able to be strong so that you're strong enough not only for yourself, but to care for that person that is experiencing cancer, whether it's your spouse, your child, your parent, whoever that may be.”

Taking Action

Cancer Hope Network offers one of the many resources available for patients with cancer and caregivers who need a support system, Blakey said. She added that it’s free, confidential and available to anyone — including in 15 languages — to meet social, emotional and psychosocial needs.

But one-on-one peer support isn’t the only type of support available for patients and caregivers. Blakey urged patients and caregivers to ask medical teams and the people around them to build a support network. In addition, care centers have other resources available, as different people have different needs to address.

“There are tools out there that match whatever those needs may be,” Blakey said. “If you feel better connecting in a group setting, there are support groups. But for those who either have geographic barriers to joining a support group, or maybe are looking for something a little bit more personal to their specific cancer … type, to talk to somebody who is m ore like them in terms of their lifestyle.”

She provided an example of a teacher wanting to talk to another teacher who has experienced a cancer diagnosis and treatment to learn how to discuss certain topics with their classroom. These topics can include how to discuss the teacher’s current situation, why they may look different and why they may not be in the classroom for an extended period of time.

Blakey also provided an example of a caregiver wanting to talk to another caregiver who could related to them being a single parent and caring for a loved one with a cancer diagnosis.

Regardless of the type of support a patient with cancer or caregiver seeks out, Blakey emphasized that people should know they are not alone.

“If peer support is the avenue that you're choosing, your pathway to hope, if that's your pathway to fighting loneliness during a cancer journey, know that even when you are not actively speaking with your mentor or your peer support partner, you have the comfort of knowing that you're not alone,” Blakey said. “We are here to walk your path with you. There are so many incredible resources out there to walk that path with you.”

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