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$37.95 Stock #29074 (ISBN 978-1-932529-07-4) approx. 276 pages 6" x 9" papercover ©2005  |
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Excerpted from Chapter 1 of Promoting Family Involvement in Long-Term Care Settings, edited by Joseph E. Gaugler, Ph.D. Copyright © 2005 by Health Professions Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Chapter
1 Although the myth prevails that families tend to abandon older adult relatives who live in nursing homes or similar settings, research since the 1970s has helped to debunk this perception (e.g., Bowers, 1988; Maas et al., 2000; Rowles & High, 1996; Smith & Bengtson, 1979; York & Calsyn, 1977; Zarit & Whitlatch, 1992). In contrast, family members appear to remain involved in various ways in the lives of residents in long-term care facilities, and in some instances this family involvement is linked to positive outcomes on the part of residents and even family members. This has led to several efforts to determine how family involvement is most effectively maximized and integrated in residential facilities to enhance resident quality of life, family wellbeing, and staff job satisfaction (e.g., Hepburn et al., 1997; Maas et al., 2000; Pillemer et al., 2003). The purpose of this book and its subsequent chapters is to present several programs that have demonstrated potential for enhancing family involvement in nursing homes. In addition to providing readers with conceptual background and evaluation results, an ongoing emphasis throughout each chapter is on the barriers to and challenges of implementing similar programs in a long-term care setting. In this respect, this book represents more than a simple summary of existing research; it is also a true guide for practitioners, families, and others to identify approaches that are best suited to their own particular residential environments and experiences. This introductory chapter serves to ground and organize the subsequent chapters by providing an overview of what is known about family involvement in nursing homes. What does state-of-the-art research tell us about how family involvement occurs in nursing homes? What accounts for high or low levels of family involvement? How does family integration have an impact on important outcomes such as resident quality of life? This chapter then highlights some of the limitations of family involvement research and the need for ongoing work in this area, whether it is more descriptive or based on interventions such as those programs reviewed in this book. DESCRIBING FAMILY INVOLVEMENT Early studies of families and nursing homes tended to emphasize the potential isolation residents experienced. For example, researchers characterized the admission of an older adult to a nursing home as the "nadir" of life, or a time of intensified isolation and depression experienced by both family members and residents (Cath, 1972; Jones, 1972). Additional work on family involvement in long-term care viewed the family member as interfering, disruptive, and critical of professional policies, staff, and the overall facility environment (Bates, 1968; Blum, 1960). A special task force organized by Ralph Nader in 1970 designed to highlight the deficiencies of nursing home care found that 60% of residents in 10 nursing homes in West Virginia received visitors once a week, and the other 40% were visited once a month or less (Townsend, 1971). The findings indicated that many residents did not receive regular visitors, but the nonscientific nature of this inquiry makes it difficult to determine the reliability of the findings. This section synthesizes and critiques the findings of subsequent research describing family involvement. Visiting Various research efforts have attempted to determine how often family members visit relatives in residential long-term care settings (particularly nursing homes). Research throughout the 1970s sought to dispute the notion that families "dumped" their relatives in nursing homes to relinquish responsibility, leaving residents in isolation. For example, data collected from the 1973-1974 National Nursing Homes Surveys indicated that many nursing home residents received visitors; 61% of residents were visited at least once a week, whereas 25% were visited less than weekly. Only 11% of residents received no visitors. The majority of residents (50.3%) received visits from children (National Center for Health Statistics, 1977, 1979). Similar classic research suggested a similar frequency of nursing home visits (Gottesman, 1974; Spasoff et al., 1978). Later work tended to focus on family visits more explicitly. Efforts that focused on both qualitative (or narrative/open-ended information) and empirical/numerical data suggested that the quality of family- resident relationships remained strong for many families and that visits tended to occur more than once a week (Smith & Bengtson, 1979; York & Calsyn, 1977). A considerable amount of research since the 1980s has reiterated these findings; families tend to visit residents in nursing homes at least once a week, if not more often. These findings remain similar, even for residents who have severe dementia (Bitzan & Kruzich, 1990; Hook, Sobal, & Oak, 1982; Monahan, 1995; Moss & Kurland, 1979; Tornatore & Grant, 2002). Although the research cited previously tended to be cross-sectional ("one shot in time" research designs), other studies have examined family visits over time. Although cross-sectional studies tend to suggest that length of stay is negatively correlated to family visits (i.e., the longer the resident has been in the nursing home, the less often families visit), studies that actually examine family visits over time have found otherwise. Follow-up studies ranging from 2 weeks to 9 months to 2 years have found either stability in the number of nursing home visits or even increases (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Gaugler, Zarit, & Pearlin, 2003; Port et al., 2001; Ross, Rosenthal, & Dawson, 1997), and, in some instances, these visits tended to last from 2 to 4 hours on average. The existing literature tends to support the notion that family members continue to remain involved in the lives of relatives following admission to a nursing home. Although the frequency and duration of visits vary somewhat, the data certainly seem to dispute the perception that families leave the residents in isolation. Several limitations are apparent in the existing literature, however. Most studies tend to analyze data from a single type of informant (e.g., residents, family members, staff) on family visits, and issues such as social desirability, recall error, and an overall lack of reliability in hour estimates may influence the accuracy of this information. Considering multiple sources (e.g., residents, family members, staff) when gathering data on degree of family visits would offer greater insight into how often family involvement actually occurs. Types of Family Involvement Although family members often provide the majority of care to relatives with disabilities while living in the community (e.g., Whitlatch & Noelker, 1996), an important change can take place when admission to a nursing home occurs. Some researchers have suggested that family care in nursing homes is based on the concept of "dual specialization" (Dobrof & Litwak, 1977; Litwak, 1985): Staff members tend to provide personal, "hands-on" care, whereas family members offer more emotional and psychological support to residents. However, Moss and Kurland (1979) found that most family members (72%) did a number of "special things for the resident that might not otherwise be done" (p. 274), such as grooming, cheering up the resident, or having conversations with the resident. Linsk, Miller, Pflaum, and Ortigara-Vick (1988) found that family members were involved in a similar range of activities, such as talking with the resident, holding hands or touching the resident, and helping the resident with grooming. Other research has emphasized that families continued to feel responsible for a wide range of tasks, including personal tasks (e.g., grooming, clipping fingernails), instrumental tasks (e.g., doing laundry, arranging for hair styling, shopping for the resident), and socioemotional tasks (e.g., writing letters, maintaining the resident's apartment, dealing with family guilt feelings), after nursing home admission (Bonder, Miller, & Linsk, 1991; Rubin & Shuttlesworth, 1983; Schwarz & Vogel, 1990; Shuttlesworth, Rubin, &Duffy, 1982). Families also felt responsible for new dimensions of assistance not originally provided while the relative was cared for at home, such as reporting abuse to authorities, promoting family understanding of nursing home policies, and initiating actions to ensure good staff-family relations. When family members and staff were asked who had primary responsibility for such tasks, a considerable amount of role ambiguity was apparent (i.e., staff felt that a particular task was the nursing home's responsibility, whereas family members felt that certain care tasks remained their responsibility), suggesting the potential difficulty of negotiating care responsibilities between family members and care staff. Additional research on the types of activities family members engage in revealed similar results. Stephens, Kinney, and Ogrocki (1991) found that a greater proportion of 60 in-home caregivers provided help with activities of daily living (ADL) when compared with 60 family caregivers whose relatives had been admitted to nursing homes. Studies on caregiving costs and time use for older adults with cognitive impairments and their family caregivers reported that family caregivers tended to relinquish intensive ADL care to nursing home staff but remained socially involved with residents and offered other types of help, such as supervision and monitoring of quality of care (Max, Webber, & Fox, 1995; Moss, Lawton, Kleban, & Duhamel, 1993; Rice et al., 1993). Although many studies suggest that families tend to relinquish care responsibilities to staff, longitudinal analyses tend to suggest that family members provide considerable personal care over time (Aneshensel et al., 1995; Penrod, Kane, & Kane, 2000). Additional efforts have utilized more open-ended, narrative approaches when studying family involvement in nursing homes. Findings suggested that family members do not discuss care for relatives in residential care in terms of task allocation, but instead describe care by its purpose (Bowers, 1988; Duncan & Morgan, 1994; Hertzberg, Ekman, & Axelsson, 2001; Karner, Montgomery, Dobbs, & Wittmaier, 1998; Keefe & Fancey, 2000; Kolb, 2000; Rowles & High, 1996; Tickle & Hull, 1995; Tilse, 1997). Family members emphasized that their main goal when helping residents in nursing homes was to preserve the identity of the older relative. Family members suggested that maintaining a relative's identity is best accomplished through positive relationships with staff. For example, many family members served as a teaching resource to staff members so that aides and nurses would provide more personalized care to the relative in the nursing home. There are several limitations to our current understanding of the types of family care delivered in nursing homes. First, it is unknown how family members perceive their role after a relative's admission. Most studies examine the hands-on care family members provide; more socioemotional types of help or family members' interactions with staff (e.g., monitoring or directing care) are generally not considered. A more diverse consideration of family involvement in nursing homes is needed to determine the comprehensive role of families following a relative's admission. FAMILY INVOLVEMENT AND RESIDENT OUTCOMES A theme running through much of the available research is that family involvement is associated with positive outcomes on the part of residents; however, few studies have examined the relationship between family involvement and resident psychosocial or functional outcomes. An early study by Noelker and Harel (1978) identified predictors of well-being and survival among 125 long-term care residents of 14 nursing homes. Regression models found that residents who had "met their desire for visitors" were more likely to report higher life satisfaction. In addition, Greene and Monahan (1982) determined whether family visits to nursing home residents affected psychosocial well-being. A random sample of 28 nursing homes and 298 residents within these facilities were included. Staff members were surveyed on a variety of dimensions, and subsequent empirical models found that a higher frequency of nursing home visits was associated with more positive psychosocial outcomes on the part of residents. Subsequent research by Lewis, Kane, Cretin, and Clark (1985) identified determinants of resident discharge from nursing homes. Over a 2-year period, 563 residents from 24 nursing homes in Southern California were followed. Nursing notes provided information on family visits (coded as 0 = no; 1 = yes). Residents who received visitors were more likely to be discharged from a nursing home alive. Subsequent work by Penrod and colleagues (2000) attempted to determine whether informal care provided to residents during the 2 weeks following admission to a nursing home influenced discharge over a 6-week period. Caregivers providing the greatest informal assistance (i.e., more than 35 hours of care per week) were most likely to discharge their loved ones from a nursing home. Taken together, the findings suggest that informal care may potentially influence the quality of care that residents receive, possibly leading to discharge to the community. Research
by Kiely, Simon, Jones, and Morris (2000) examined the empirical relationship
between nursing home resident social engagement and mortality over a 1,721-day
interval. A total of 927 residents from a Boston, Massachusetts, nursing
home were included. A 6-item scale of social engagement developed by Mor
and colleagues (1995) was used. Residents with greater scores on the social
engagement scale were less likely to die during the study. Although limited
to one facility and to residents who could communicate, the long follow-up
period and large sample provided additional results supporting the positive
effects of social integration with important outcomes. Another large scale
study by Zimmerman, Gruber-Baldini, Hebel, Sloane, and Magaziner (2002)
included 2,015 new admissions from59 randomly sampled nursing homes in
Maryland. In addition to a wide range of other factors, a greater percentage
of facility visitors per every 100 beds was significantly associated with
a slightly lower risk of infection and hospitalization for infection among
nursing home residents. 
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