[Editor’s note: We originally published this story on Dec. 9, 2017, when the investigators first presented their data publicly It has been updated to reflect the data’s publication in a journal.]
“When I heard you were doing a caregiver survey, I thought, ‘Finally — someone cares.’”
“There are times when you want to say ‘I’m done!’ but you have to keep going.”
“Being a caregiver was one of the most challenging and rewarding roles I’ve played in my life. It truly brought my husband and me closer, and we share something special from what we faced in our later 20s to early 30s.”
Being the caregiver of a loved one with a serious illness can be a tough job, both physically and emotionally. And as revealed by these quotes from anonymous caregivers in a new study, it’s a role that’s often under the radar despite its importance for patients’ well-being.
Recently, researchers at Fred Hutchinson Cancer Research Center published the results of this study, the largest ever, on the well-being of informal caregivers — mostly spouses — of cancer survivors who had received a blood stem cell or bone marrow transplant.
“What was surprising to us was that a large number of caregivers are doing very well,” said Dr. Stephanie Lee of Fred Hutch, the senior researcher on the study. “So that’s great to see. But there’s a substantial proportion of them, about 20 percent, that are doing much worse than the general population.”
The National Cancer Institute–funded study identified several factors that are linked to poor physical and mental quality of life in this subset of caregivers, even years after their loved one received a transplant.
This research “opens up the floor to studies of how we can support caregivers we think could be at risk,” said study leader Dr. Kareem Jamani. “And even outside of the research realm … maybe we as clinicians will realize, hey, maybe the caregiver needs some support here, not just the patient.”
The study was published online on June 21 in the journal Biology of Blood and Marrow Transplantation.
In blood stem cell and bone marrow transplantation, which is used to treat leukemia and other blood diseases, caregivers “play a really important role through a very difficult and traumatic process for patients,” Jamani said. In fact, having a caregiver is so important for a patient’s outcomes — even survival — that doctors in the Fred Hutch/University of Washington Cancer Consortium require their patients to have one before undergoing a transplant, Lee said.
Benny Juarez, 50, of Oakland, California, is one of them. Juarez has dedicated the past several years of his life to taking care of his girlfriend, Kristin Kleinhofer, who in 2014 was diagnosed with relapsed leukemia. She received a transplant of donated umbilical cord blood through a Fred Hutch trial in 2015.
Kleinhofer is now cancer-free, but getting to this point has been harrowing, for both her and, in a different way, for Juarez. Over the course of a year, she went through standard-of-care chemotherapy, experimental chemotherapy, an experimental immunotherapy and the transplant. These were punctuated by stressful searches for each new treatment option and mired in serious side effects that lasted long after her cancer was sent into complete remission.
The caregiving role can be exhausting, Juarez said. From overseeing medications and managing medical appointments to assisting in the activities of daily living, there’s so much to do. Because a transplant replaces a patient’s immune system, the patient is vulnerable to infection for a long time as the new system takes hold — meaning that even cooking a meal requires extra effort; for example, food-preparation areas, dishes and utensils must be sterilized to reduce the patient's infection risk. Add to the extra physical work the emotional impact of seeing a loved one face death, dealing with stressful medical emergencies, and becoming more isolated from family, friends and hobbies.
“It’s day by day, and sometimes minute by minute. It just goes on,” Juarez said. “You’re just really alert and really ‘on.’” He looks back wryly at what he expected when he took on the role: “I thought she’d just be tired and I’d have some quiet time. I was really surprised that there was not too much downtime and time for oneself.”
One of the hardest things is when it all does come to an end, Juarez said. The patient (hopefully) recovers. The need for caregiving diminishes. The whirlwind dies down. You finally have the chance to reflect on the nightmare that you’ve lived. And those reflections are difficult to escape.
At the same time, said Juarez, his experience has made him rethink his focus in life. He’s gone back to work in corporate accounting — he’d stopped working to focus on caregiving — but recently he’s been taking a month off between contract gigs. “People are floored by that. I would have been floored by that, too,” he said. “You re-evaluate what’s important.”
Juarez’s thoughts are echoed by many of the anonymous comments from caregivers who responded to the Fred Hutch team’s survey. The pages of comments shine a light on lives transformed by caregiving — for better and for worse — and reflect the trauma the caregivers experienced throughout their loved ones' illness.
The caregiver comments reveal a wide range of feelings, from anger and depression to contentment and pride. And they shower both gratitude and admonitions on the doctors who saved their loved ones’ lives while sometimes leaving the caregivers to feel overlooked.
“Twenty-five years ago, the questionnaire might have seemed more appropriate. We have dealt with these issues on our own over the last 25 years and you just now resurface these feelings?” wrote one.
“Here in the transplant program, we’ve actually always involved caregivers in the medical care and the social support of the patient,” said Lee, who is the research director of the Fred Hutch Long-Term Follow-Up Program, through which the caregiver study was conducted. “And we had gotten a lot of comments that maybe we were not as attentive to what the caregiver experience was.”
The Long-Term Follow-Up Program provides lifelong care and monitoring to people like Kleinhofer who have received a blood stem cell or bone marrow transplant. For years, the program has sent annual surveys about quality of life to people who have received a transplant, information that has helped guide research to improve long-term post-transplant care. But from 2014 to 2015, the mailing included a second survey for the caregivers. The survey asked about physical health and mental and emotional well-being, using the many of the same questions for the caregivers and patients.
Nearly 850 survivor–caregiver pairs responded to the survey. On average, the pairs were six years past transplant, but for some, it had been decades.
The team found that about one in five caregivers had poor physical or mental quality of life (or both) compared to the general population. And caregivers reported experiencing depression and sleep disorders at a higher rate than the general population.
Three demographic characteristics of the caregivers themselves were strongly linked to having poor quality of life: gender, age and education level. Female caregivers tended to have worse physical and mental quality of life. Those who were older than 60 had worse physical quality of life but better mental quality of life. Caregivers with less education had worse physical quality of life.
“So I think that lends itself to saying that we can probably identify these caregivers who might be at risk, even before the transplant happens, using those characteristics,” said Jamani, who is now at the University of Calgary but led the study’s data analysis as a visiting physician at the Hutch. “We can intervene before transplant, come up with a support plan for them.”
The study wasn’t designed to figure out the reasons for these links. But it may be that female caregivers have lower quality of life because the caregiving role is traditionally considered natural for them, Jamani suggested, meaning they get less support in their role from friends and family. And because, on average, income rises with educational level, perhaps financial stress is contributing to lower quality of life in caregivers with less education, he said.
Advice to caregivers
We asked caregiver Benny Juarez and Drs. Stephanie Lee and Kareem Jamani, who led a recent study on caregiver quality of life, what advice they would give caregivers. Here’s what they said:
Certain aspects of the patient’s health also affected caregiver well-being, the study found. If a patient’s cancer had relapsed after he or she underwent a particular type of transplant (called autologous transplant), their caregiver’s mental and physical health was more likely to be poor. And if a patient who had received a donor transplant was taking immune-suppressing drugs — probably to counteract immune-related transplant complications — their caregiver tended to have worse mental quality of life.
Such effects weren’t surprising, Lee said, as they confirmed what previous studies had found. And it makes sense, she said, that your mental well-being would be compromised if your loved one was having serious health challenges.
Lee said that this study provides her team with a lot of hypotheses for future research to pin down some of these effects — and to figure out how to help. Under the leadership of collaborator Dr. Heather Jim of Moffitt Cancer Center, the research team has assessed post-traumatic stress disorder in caregivers and their patients, and the results of that study should be published soon. And they hope that an intervention they’re testing now to encourage positive ways of thinking in patients can be extended to caregivers, too.
“We wanted to stop and analyze and figure out what to do with the results,” Lee said. “I’d love to think more creatively about what we can do for caregivers, both clinically in the [Long-Term Follow-Up] Program, and for research to try to help them.”
Fred Hutch’s clinical-care partner, Seattle Cancer Care Alliance, has a variety of supports in place for transplant caregivers, said Ann Breen, a nurse supervisor for SCCA’s Transition Services, which helps caregivers plan for the care of transplant recipients at home. For example, the clinic hosts weekly classes and events and is initiating a new series aimed at supporting caregivers. Its guide for caregivers includes suggestions for coping with the challenges of this role. And SCCA’s chaplaincy and social work services are also available to provide support to caregivers, she explained.
But this just scratches at the surface of caregivers’ needs, Breen said. Both SCCA and cancer centers nationwide are working to implement more programs to help caregivers.
Lee said she hopes this survey will help caregivers feel that their voices are now being heard by their loved ones’ medical team.
“I want to thank all the caregivers who responded, because we really need to hear from them to start to understand their experience,” Lee said, “and to thank them for all they’ve done in silent support for the patient.”
Juarez appreciates his girlfriend’s many doctors and nurses who took the time to ask him how he was doing. It didn’t happen quite as often as he might have liked, but it made sense that their focus was mostly on the person with the life-threatening cancer, he said.
Some sort of program to help caregivers could make a huge impact, Juarez said, not only for the caregiver’s well-being but also for the patient and the whole family around them. It doesn’t have to be much, he said: Training in good communication skills. Some mental health support. And even just a listening ear.
“It would definitely help [caregivers] to be able to handle it a little bit better,” Juarez said. “Something as simple as sitting next to someone and saying it’s going to be OK.”
“If the caregiver’s happy,” he said, “other people can be happy too.”
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Susan Keown is an associate editor at Fred Hutchinson Cancer Research Center. She has written about health and research topics for a variety of research institutions, including the National Institutes of Health and the Centers for Disease Control and Prevention. Reach her at firstname.lastname@example.org or on Twitter @sejkeown.