Contact: Barbara Given, MSU Institute for Managed Care
(517) 432-4326
or Tom Oswald, Media Communications, (517) 355-2281, [email protected]
PROVIDING HOME HEALTH CARE TAKES TOLL ON CAREGIVERS, PATIENTS
EAST LANSING, Mich. - Family members who are called upon to provide health care for a loved one at home often do so at the risk of their own health. And, because they often don't have the proper training, they can put their loved one at risk as well.
"We're asking these family members to provide care that we don't allow nursing students to do until their second or third year of school," said Barbara Given, a Michigan State University nursing professor who has spent a lifetime studying home caregiving. "From our previous studies we've learned that caregiving requires about 20 hours a week of family time while patients are in active cancer treatment."
With the equivalent of a half-time job added to their lives, caregivers often eat poorly, give up exercising and get inadequate amounts of sleep, she said. They also are struggling emotionally, often experiencing anxiety or depression, as they watch a loved one deal with an often-fatal but certainly chronic disease.
Family caregivers provide 80 to 90 percent of all long-term care services to family members. Recent studies show a conservative value of family services as $194 billion a year as they provide assistance to the chronically ill and disabled.
"Unfortunately, these family caregivers are often invisible to our health care system," Barbara Given said. "Family caregivers complement the health care system in an irreplaceable way."
Researchers at MSU are using a grant of more than $2 million to help ease the often tremendous burden felt by family caregivers. The $2.4 million grant from the National Cancer Institute and the National Institute of Nursing Research will be used to develop ways to help those who provide home care for cancer patients who are receiving chemotherapy.
The study brings together researchers from MSU's Institute for Managed Care (IMC), College of Nursing and Department of Family Practice, as well as others from around the country, who will test a nursing care model to help families caring for loved ones at home. Directing the study are Barbara Given, professor of nursing and IMC associate director, and Charles W. Given, professor of family practice.
Specifically, the researchers will identify 600 recently diagnosed cancer patients who are receiving chemotherapy. These patients and their caregivers will then spend time with a specially trained nurse who will guide them through the chemotherapy treatment process.
"The nurse will be able to offer some problem-solving and care-management strategies to help the caregiver help the patient," Barbara Given said.
Also taking part in this project are researchers from the West Michigan Cancer Center in Kalamazoo, the University of Michigan Cancer Center, Yale University and Bridgeport, CT.
THE FACTS: PROVIDING HOME CARE FOR CANCER PATIENTS
* During 1999, more than 1 million people will be newly diagnosed with cancer. Of those, more than 560,000 will die.
* Early detection and aggressive therapy has resulted in longer life and more care transitions for individuals diagnosed with cancer.
* Responsibility for patient care has transferred from hospitals to the home. Family caregivers provide much of the cancer care.
* Eighty-two percent of our patients need family assistance for activities such as symptom management, disability, mobility, dressings and catheters.
* Family caregivers provide at least eight hours of care a week during the first year after a loved one has been diagnosed with cancer. During active treatment, 40 percent report more than 10 hours per week in care, essentially the equivalent of a part-time job. For the year 1999, that would add up to 345 million uncompensated hours of care for those newly diagnosed with breast, colon, prostate and lung cancer.
* Family caregivers who are employed (20 to 25 percent or which are primarily adult daughters) report missing work, or taking personal and vacation days to care. A small percentage quit or retire early to provide care.
* There is a health cost to the family caregiver, who may experience fatigue, depression, and other symptoms.
* The cost in personal, physical and mental health of caregivers has yet to be fully explored. What's known is they often give up leisure, physical exercise and proper nutrition. Unknown are the use of medications such as tranquilizers or other medications and the numbers of primary care visits.
* Family members report receiving little information or direction on how to monitor patient status, how to care for equipment, manage symptoms, or when to contact health providers.
* If even 15 percent of patients have an avoidable hospital re-admission due to lack of caregiver knowledge or skill, this could have a major impact on costs of Medicare. If 15 percent of newly diagnosed patients have a two-day stay at $3,000 per day, more than $309 million could be the cost to Medicare.
* Family caregivers want information. They feel ignored and often use trial-and-error means to find the appropriate level of care.
* Families need educational and informational support to care. Advanced practice nurses may be the appropriate health care providers for this care. In pilot work, advanced practice nurses have made a difference in caregiver distress and preparation to care.
* The quality of family care on patient outcomes is unknown. Research is needed to identify and tailor the "appropriate interventions" to prepare family caregivers to lower their uncertainty regarding care and to ensure the best patient outcomes.
* This issue is important to the health and well-being of the United States, both the cancer patients and their family caregivers. Family care is a hidden health care resource.
Source: Family Care Study, Michigan State University
###
RSS