Caregiving in the Post-Hospitalization Period: Findings From a National Survey

  1. from Nursing Economics
    Posted 12/04/2002

    Catherine DesRoches, Robert Blendon, John Young, Kimberly Scoles, Minah Kim

    Over the last half of the 20th Century, hospital lengths of stay steadily decreased. In 1946, the average patient could expect to be hospitalized for approximately 9 days. By 1999, that same patient would be admitted for an average of 6 days (American Hospital Association [AHA], 2001). This decrease has been attributed to several factors including the introduction of Medicare and subsequent changes in its payment structure, the managed care "revolution," and advancing medical technologies. Accompanying this decrease has come the concern that patients are being discharged from the hospital too quickly, to nonpaid care-givers, oftentimes family members, who are not properly trained and ill-equipped to take on the responsibility of providing complex and demanding care. With over 34 million hospital admissions in the United States each year, there are a substantial number of Americans needing care after discharge (AHA, 2001).

    The challenges faced by non-paid caregivers are well documented in the literature; however, little is known about the burdens faced by those providing care in the post-hospitalization period, particularly those who are providing care for a longer period of time. Studies have found that caregivers report high levels of stress, as well as poor physical and emotional health (Donelan, DesRoches, & Falik, 2001; Donelan et al., 1999; Emanuel, Fairclough, Slutsman, & Emanuel, 2000; National Alliance for Caregiving, 1997; Schulz & Beach, 1999). In addition, the economic, employment, and career effects of caregiving can be substantial. Many report career sacrifices, monetary losses, and workplace discrimination (AARP Public Policy Institute, 1999; Metlife, 1999; Shellengbarger, 2000). What is less known is the nature of these problems for people who are caring for someone in the post-hospitalization period.

    There have been several national surveys of caregivers; however, these focus on caregiving in general, not caregiving specifically related to a hospital stay. As lengths of stay continue to decrease, this group of caregivers and the challenges they face will become increasingly important. Hospitals have a responsibility for preparing patients and caregivers for their needs after discharge. If these needs are not met and this growing group of caregivers continues to face problems, this will become an important challenge for policymakers in the future.

    The purpose of this article is to examine the special challenges faced by caregivers who are providing care to someone related to a hospital stay and doing it for a period of time longer than 2 weeks. To further our understanding of this important group, four questions are examined: (a) Who are these care-givers and for whom are they providing care? (b) What kinds of outside services do their care recipients use, their role in arranging them, and any difficulties they encountered? (c) What kind of help are they directly providing to their care recipient and do they find providing this help difficult? and (d) Do caregivers in the post-hospitalization period need additional help to carry out and manage these tasks?

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