"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."
Acting as a caregiver for a loved one with a serious illness can be a tough job--physically and emotionally--and it is a role that often is under the radar despite its importance for patients' well-being.
The results of a study by the Fred Hutchinson Cancer Research Center on the well-being of informal caregivers--mostly spouses--of cancer survivors who had received a blood stem cell or bone marrow transplant has been published in the journal Biology of Blood and Marrow Transplantation.
"What was surprising to us was that a large number of caregivers are doing very well," says Stephanie Lee, senior researcher on the study. "So, that's great to see, but there's a substantial proportion of them, about 20%, 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, and even outside of the research realm, maybe we as clinicians will realize that the caregiver needs some support, not just the patient," explains study leader Kareem Jamani.
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," says Jamani. In fact, having a caregiver is so important for a patient's survival that physicians in the Fred Hutch/University of Washington Cancer Consortium require their patients to have one before undergoing a transplant.
Benny Juarez, 50, of Oakland, Calif, 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 now is cancer-free, but getting to this point has been harrowing, for both...