Phyllis, in her early 60s, is a devoted wife and mother. When her husband, disabled by strokes and diabetes, came home from the hospital with a feeding tube, Phyllis was terrified. “My generation doesn’t know from computers,” she said. “I cursed that machine so much that it’s broken twice. But now I’ve got experience. I could pass for a nurse.” Phyllis was one of nearly 60 family caregivers who participated in six focus groups organized by the United Hospital Fund’s Families and Health Care Project. The theme of the focus groups was transitions in care setting, especially going home from the hospital. These transitions are particularly traumatic to family caregivers, but they are also opportunities for professionals to provide education, support, and referrals for further assistance. The focus groups, as well as applications from 16 hospitals for the Fund’s Family Caregiving Grant Initiative, were the major sources for the Special Report, “Rough Crossings: Family Caregivers’ Odysseys through the Health Care System.” (See the Fund’s website, http://www.uhfnyc.org for further information.) Both sources provided compelling evidence that cost containment and earlier discharge policies put many family caregivers in the uncomfortable role of “passing as a nurse,” while limiting the time and resources professional nurses have to train and support families. Even when home care nursing is available, it is usually limited to a few, brief visits. Many hospital nurses become frustrated when family members have difficulty absorbing new information. Focus group participants emphasized that they were expected to learn an unfamiliar and often unpleasant task with a loved one as their first subject (Levine, 1998). This issue of Nursing Counts explores caregiving from several perspectives, including the economic contribution made by caregivers to the health care system and the methodological problems inherent in research on caregiving. As guest editor of this special edition of Nursing Counts, I draw on my own personal experience of caregiving as well as on data from a variety of sources that shed new light on the experience of informal caregivers (Levine, 1999). Training and supporting family caregivers while their relative is hospitalized and following up at home should be routine. A health care system that fails to do this shortchanges patients, nurses, and family caregivers.

Levine, C. (1999). The loneliness of the long-term caregiver. New England Journal of Medicine, 340(2), 1587-1590.

Levine, C. (1998). Rough Crossings: Family caregivers’ odysseys through the health care system. New York, NY: United Hospital Fund.

United Hospital Fund

Altman, Cooper, and Cunningham (1999) suggest that caregivers undergo extreme emotional, financial, and physical burdens. Although primary caregivers are often the focus of such studies, serious burdens are also placed on other family members living with a disabled person. They used the National Medical Expenditure Survey to analyze health care utilization of all family members living with a disabled person. Depending on the definition of disability, the researchers found that 7% to 48% of all multi-person families have one or more members with a disability. Overall, results showed that being in a family with a disabled member contributes to increased utilization of health care resources. Moreover, stress-related health care needs and resource limitations may be factors in health care utilization and expenditures. Altman et al. further suggest that results show future policy changes should not treat disability as an isolated case, but rather within a family context.

Altman, B.M., Cooper, P.F., and P.J. Cunningham. (1999). The case of disability in the family: Impact on health care utilization and expenditures for nondisabled members. The Milbank Quarterly 77 (1), 39-75.

In an effort to reduce costs, comprehensive patient discharge planning has reduced short-term hospital readmissions. Until recently, intervention programs for discharged patients who were at high risk for readmission had not been thoroughly explored. However, a randomized clinical trial at two Philadelphia hospitals investigated the outcome of a program using advanced practice nurses (APNs) to do extensive discharge planning, as well as an intensive home intervention for elders at high risk for readmission. APNs targeted both the patient and the family caregiver's ability to manage health problems by focusing on key factors that include: sleep, diet, and emotional status. Naylor et al. (1999) found that the APN discharge planning and home intervention significantly reduced readmissions and lengthened the time between discharge and readmission. At 24 weeks after discharge, total Medicare expenditures were 50% lower in the intervention group than in the control group.

Naylor, M.D., Brooten, D, Campbell, R., Jacobsen, B.S., Mezey, M.D., Pauly, M.V., and J.S. Schwartz. (1999). Comprehensive discharge planning and home follow-up of hospitalized elders. JAMA, 281(7), 613-620.