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The cancer came and it went. And it came and it went again.
And when it returned, once again, it had spread throughout Kelly Sidwell's body. Her oncologist suggested an aggressive course of chemotherapy, but Sidwell knew that sort of treatment was unlikely to extend her life in any meaningful way. She had been fighting long enough. And she was determined to make the most of the time she had left.
Todd Sidwell was determined too. But although he was, by that time, an eight-year veteran of his wife's cancer battles, he didn't know anything about how to care for her once the war had been conceded.
On Wednesday, researchers at the University of Utah College of Nursing announced that they have received a $7.7 million grant to launch three efforts to aid caregivers like Todd Sidwell. The five-year grant is funded through the National Cancer Institute by the National Institutes of Health and represents the largest research grant in the history of the nursing program.
The three studies will share recruitment, data collection and analysis. Starting in May, the study will recruit about 300 couples who have enrolled in hospice care.
Noting that there is little research related to caregivers conducted on the end of life, Kathi Mooney, the grant's lead researcher and a U. professor of nursing, said the grant will answer crucial questions.
"It's critically important to understand how families and people get through this time and what health care providers can do to actually improve the experience and the outcomes," she said.
"There are the demands of emotionally losing their loved one, plus physically helping to take care of them at the end of their life. It's a very demanding, difficult and stressful time."
Sidwell could not agree more. "We didn't even have any kids," he said. "So I had no experience, none at all, caring on a really demanding, daily basis for another human being."
Moved by the supportive work of his wife's hospice team, Sidwell left his job in the film and television industry after her death and now works as a chaplain for Rocky Mountain Hospice. He finds the U. projects promising from both perspectives.
For the first study, enrollees will help the U. evaluate whether an automated call-in system improves the care of the patient as well as aids the caregiver. The partner will call everyday to report the patient's symptoms. If they are struggling with breathing, anxiety, pain or other problems, the hospice nurse will be notified automatically. Caregivers will be asked about their stress levels and be provided advice on how to manage.
"If nothing else, just knowing that you had that resource would give you peace of mind," Sidwell said. "My hospice people were very, very supportive... but looking back now, there's so much more I know about how to utilize a hospice team, what to ask for and what to demand. I didn't know anything about caregiving and having that additional resource would have been really wonderful."
The second study will examine communication between hospice nurses and spouse caregivers and how it changes over time. Conversations will be taped and analyzed.
The study will be led by Lee Ellington, an associate professor and member of the Huntsman Cancer Institute, with Mardie Clayton, assistant professor of nursing.
Jay Johnson, a hospice nurse with Rocky Mountain Hospice, said she would value the opportunity to review a tape of her conversations with hospice caregivers. "There are times when things come out of your mouth and you say, 'Oh my, why did I say that?'" she said. Being able to review conversations and reassess how things went would be beneficial, she said.
As a chaplain who has participated in similar studies, Sidwell said he recognizes the tremendous benefit the research will have for hospice workers and ultimately for those they serve. But from his perspective as a caregiver, Sidwell noted that researchers might find some resistance from people who are already conceding a tremendous amount of privacy during an emotionally trying time.
"I would have initially had a hard time and that would have been a hard sell to me," he said. "Already, you have strangers in your house, having access to your home, to your bedroom, to all these very intimate parts of your life. That's tough to begin with," he said.
The third study will address whether a one-on-one bereavement program helps the partners manage loss and re-establish their lives. The 14-week program will provide skills training, too, such as managing finances, if needed.
Sidwell said he is a staunch advocate of such programs, having benefited from a bereavement support program after his wife's death.
The bereavement support study will be led by Michael Caserta, Ph.D., professor in the college of nursing's gerontology interdisciplinary program and associate of the U.'s Center on Aging; Dale Lund, professor and chair of sociology at California State University, San Bernardino; along with Rebecca Utz, assistant professor of sociology at the U.
Other U. researchers include Kathie Supiano, assistant professor of nursing, and Gary Donaldson, professor of anesthesiology.
Studying support for caregivers
Starting in May, three University of Utah studies aimed at helping caregivers will begin recruiting about 300 couples, married and unmarried, who have enrolled in certain hospice care programs. The U. is still determining which hospice providers will be involved.