Family support critical for managing patients with chronic health problems

Almost 40 percent of chronically ill older adults in the U.S. live alone, and a majority of those who are married have spouses with at least one chronic illness that can affect their ability to provide support, according to a U-M study published in the journal Chronic Illness.

The results underscore the importance of health care professionals directly addressing the roles that family members play in the care of their aging parents or other relatives.

"Family members have the potential to significantly help many patients with chronic illness manage their health conditions," says co-author Ann Marie Rosland, M.D., clinical lecturer in the Department of Internal Medicine at the University of Michigan Medical School and research investigator for the Center for Clinical Management Research in the VA Ann Arbor Healthcare System.

"However those family members need more than just information to be successful. We need to teach family members communication skills and provide the tools that they can use to encourage patients to stick to their health regimen."

The study's authors looked at U.S. residents who were age 51 or older with chronic health problems who participated in the 2006 Health and Retirement Study, a national longitudinal study conducted at the University of Michigan's Institute for Social Research and funded by the National Institute on Aging.

Researchers found that 93 percent of the chronically ill older adults had adult children, but for half of them, the children lived more than 10 miles away.
Roughly 19 million older chronically ill Americans have adult children living at a distance.

"Even when a spouse is available, the vast majority struggle with their own chronic medical needs and functional limitations," says John D. Piette, Ph.D., professor of internal medicine and a senior career scientist with the VA Ann Arbor Healthcare System.

"Fortunately, most of these people had adult children who could be another source of support for their chronic illness care," he says. "But these relationships are increasingly strained as adult children move father away from their parents to seek employment or find a more affordable living situation. Distances pose a barrier to the monitoring and frequent support for behavior change that many chronically ill patients need."

Piette and his colleagues at U-M are working to develop telephone monitoring systems that involve family members in a relative's care through e-mail alerts or automated phone calls. The "CarePartners" program has been developed for patients with heart failure, diabetes, depression, and cancer chemotherapy. The program is being studied as part of randomized trials and community demonstration programs throughout mission as well as internationally. Learn more about CarePartners here and in Spanish, here.

"We know that people with family support follow their self-care regimen more regularly and this is vital to maintaining their health," says Maria Silveira, M.D., M.P.H., physician scientist at the VA Ann Arbor Healthcare System and assistant professor of internal medicine at the University of Michigan Medical School.

Additional U-M authors include Mohammed Kabeto, M.S., research associate in internal medicine and Kenneth M. Langa, M.D., Ph.D., professor of internal medicine, core investigator with VA Ann Arbor Healthcare System's Clinical Management Research, and professor of health management and policy at U-M's School of Public Health.

The paper was one of four featured in this issue of Chronic Illness, for which Piette served as editor.

The other U-M research presented online in late March included:
A study on emerging models for mobilizing family support for chronic disease management, authored by Rosland and Piette.

An investigation of the ways in which family members help or hinder self-management among functionally independent adults with diabetes or heart failure, authored by Rosland, Silveira, Piette and Michele Heisler, M.D., M.P.H., associate professor of internal medicine and assistant professor of Health Behavior and Health Education at U-M and Hwa-Jung Choi, Ph.D., research analyst in U-M's Robert Wood Johnson Clinical Scholars Program.

Caregiver's perceptions of cancer patients' symptoms and how understanding symptoms can affect the patient's outcomes over time by Silveira, Rosland, Piette and Michigan State University's Charles Given and Barbara Given.
Commentary by Piette on "Moving beyond the notion of 'self' care."

"The challenges facing chronically ill patients, their families and their clinical teams are enormous," Piette says. "We need a recognition that for many patients 'self' management is a misnomer, since their disease care is actually shared by their family and broader social network."

Informal caregivers play essential roles in filling the gaps in services found in most formal healthcare systems, such as providing assistance with transportation, medication refilling, emotional support, activities of daily living and a host of other vital tasks.

"Indeed, for many chronically ill patients, sharing their burden with intimate others makes living with their disease not only possible physically, but also worthwhile emotionally and spiritually," Piette says.

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