Research
Legacy project lessens stress for caregiver' patients

Family members who spend time creating a scrapbook with photographs or videotaping family stories can strengthen their bonds with individuals with chronic, life-limiting illnesses, a study shows.

This intervention also lessens patients' breathing difficulty and increases their sense of religious meaning, says Louis Burgio, a research professor at the School of Social Work.

"The Legacy Project engages in the meaningful construction of something to represent the life story of the patient," Burgio says. "It is one of the first studies to examine the impact of life review on the family members as well as the patient involved."

The study, which involved researchers at U-M and the University of Alabama, examined a family-based intervention designed to decrease care-giving stress and improve communication between patients and caregivers.

Research participants, who were age 60 or older, lived in a southeastern United States community and recruited from community agencies including hospitals and dialysis centers. They had a life-limiting illness and received assistance with daily activities.

This intervention assisted families and their ill relatives with a life review to help the ailing relative with stress, depression and denial prior to the person's death.

The intervention group received three in-home visits from an interventionist who worked with the family to construct a personal legacy, such as videotape recording or creating a photo album. The visits lasted about 72 minutes.

A control group received at least three support telephone calls that lasted about 14 minutes. The callers asked general questions of patients and caregivers and expressed empathy.

Results showed that patients were more active than caregivers in working on the legacy activities. Caregivers in the intervention group reported reduced stress and depression.

"So, working together on a joint project called a legacy improved the quality of life of both patients with life-limiting illness and their family caregivers," Burgio says.

Caregivers in the control group noted that their patients did not often engage socially, whereas patients in the intervention group became more talkative.

The researchers found partial support for enhanced aspects of religion or spirituality among patients in intervention groups, which could mean the patients sought meaning-based coping in the face of negative health outcomes.

"This was best illustrated by a quote from one of our African-American participants working with her life-long friend. She said, 'If you can't go forward, don't go backward. Stand still.' That really illustrates the present-time focus and emphasis on being and meaning inherent in a person's legacy," he says.

The findings appear in a recent issue of the Journal of Palliative Medicine. Allen and Burgio recently received funding from the National Institute of Nursing Research to continue their research and make it more accessible in community settings by training retired senior volunteers to work as "Legacy Coaches" and deliver the intervention to palliative care patients and their family caregivers.