Silver Linings in Caregiving

June 19, 2013
Jane Hill

CURE, Summer 2013, Volume 12, Issue 2

Caregivers to patients with cancer find benefits in the experience.

Rosa was a live-in nanny for Victoria Franco's infant son 25 years ago. When she moved out later, she continued to clean house for Franco in Miami, as well as for Franco's mother, who lived 45 minutes away. Rosa would report to Franco if she noticed anything amiss with Franco’s elderly mother, in effect, looking after the family again.

So when Rosa, a Colombian immigrant with limited English-language skills and no family nearby, learned she had breast cancer about 10 years ago, Franco stepped in as caregiver. Rosa stayed with her for a few days after the surgery. Then, in fall 2012, during a routine colonoscopy, doctors found a malignant tumor and scheduled Rosa for radiation and chemotherapy. Franco, a physical therapist who runs her own practice, drove Rosa home from the colonoscopy. In her best but not fluent Spanish, she reinforced to Rosa the doctor's many instructions. "It was pretty devastating," says Franco, who knew that two of Rosa's sisters died of breast cancer. "Cancer is a scary word in her experience."

The doctors urged immediate treatment, yet two weeks after her diagnosis, Rosa had heard nothing from her medical team. Franco got on the phone to get things rolling. She rearranged her own patient schedule so she could shuttle Rosa to radiation treatments and imaging tests. "If I didn't go get her and take her, it wasn't going to happen."

The effects of radiation were "excruciating," Franco recalls, but Rosa continued working as a hotel maid until she could no longer climb stairs. She did not want surgery or a colostomy bag. The oncologist said the surgery was potentially curative, not palliative, Franco says. "I had to get that thought across to her."

Throughout this period, Franco says, "My resolve was high, but I had a lot on my own plate emotionally. I didn't know how much I could invest in this without falling apart." Still, she stayed strong for Rosa. "We got through breast cancer, and we'll get through this," she told her. Meanwhile Franco urged Rosa to persuade her daughter in Colombia to visit before the surgery.

In some ways, Franco's story is familiar to care-givers who often navigate uncertainty throughout their patient's cancer experience. In other ways, it's unusual because of the nature of Franco and Rosa's relationship and the cultural challenges. Yet, it illustrates the difficulty for healthcare professionals to define the activities of a caregiver, determine who is likely to thrive in that role and design useful protocols to help them succeed. Many studies focus on the inherent stressors associated with each stage of caregiving, from a patient's diagnosis through treatment and beyond. Unmitigated stress levels can cause physical and psychological harm, including sleep disturbances, depressive symptoms, compromised immune function and high blood pressure. Other studies show that certain circumstances, such as social isolation or financial hardship, are often additional burdens that can further jeopardize a caregiver's health and quality of life. Because a caregiver's health is often intertwined with a patient's outcome, healthcare professionals want to mitigate these stressors for the sake of both.

But caregivers are more than the sum of their stressors. Many have a resilience that comes from personal traits or belief systems. Researchers are interested in those strengths, too.

Cancer patients often describe the personal growth they experience in the face of life-threatening disease. Professionals rarely ask caregivers about their own personal growth, but Youngmee Kim does. It's practically her mission. In 2007, as director of family studies at the American Cancer Society's (ACS) Behavioral Research Center in Atlanta, Kim and two colleagues explored issues of personal growth with 896 middle-age participants in the National Quality of Life Survey for Caregivers. They tested whether caregivers, like cancer patients themselves, would discover benefits or life lessons, while facing the traumatic event of cancer in the family.

The researchers hypothesized, based on earlier studies, that caregivers who rely on spirituality as a coping tool would be more likely to find life lessons in stressful situations. Kim, now an associate professor of psychology at the University of Miami in Coral Gables, Fla., explains that "spirituality" covers a spectrum of beliefs that include an ability to make peace with or find meaning in what has happened. "In facing most major life events, adults tend to want to find out: 'Why me?' It's a very natural process to go through," she says.

The data showed that family caregivers found six broadly defined benefits from their cancer caregiving experience, which the researchers categorized as acceptance, empathy, appreciation, family, positive self-view and reprioritization. It turns out that all of the benefits were heightened for those who used spirituality as a coping tool and for those who perceived that they had access to social support.

The biggest winners were caregivers who found an ability to accept what had happened, who came to realize a greater appreciation for life, and who developed a positive view of themselves as strong or patient. Those benefits contributed directly to more overall satisfaction with life and less depression. On the other hand, caregivers who developed more empathy for others or who refocused their life's priorities scored less well in psychological adjustment and had greater depressive symptoms.

"Reprioritizing your life can yield positive outcome, but it also involves a bittersweet process," Kim explains. Giving up social activities or taking up new duties can cause distress, for example.

The report concluded "that accepting new possibilities of emotional and spiritual growth, appreciation for new relationships with others, and maintaining core priorities in life are key elements in thriving when caregivers are faced with the challenges of cancer in their family."

Kim summarizes the possibly complex messages: "It's important for caregivers to take a moment to smell the roses, to be patient in searching the meaning out of what has happened in their family."

Franco looks back on the many times her alarm clock rang at 4 a.m. so she could get Rosa to all-day appointments. "There were days when I thought it was all too much," she says, "and then I followed through and felt great about it. Each [accomplishment] gave me the desire to keep going."

Franco says she believes a higher power put her in a position to care for Rosa. She had the means and the flexibility, medical familiarity and language skills. And, most importantly, she found meaning in caregiving. "Rosa took good care of my baby, so I could work without worry," Franco says. "What more precious gift could she have given me? She looked out for my mom, too. This was the gift that gave back to her."