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COPYRIGHT 2001 JAI Press, Inc.
1. Introduction
Family members continue to have extensive contact and close emotional ties with their older adult relatives after institutionalization (Aneshensel, Pearlin, Mullan, Zarit, & Whitlach, 1995; Brody, 1986). As well, familial caregivers often place great importance on their continued participation in the care of their older adult relatives after long-term care placement and often actively assume responsibility for a number of care tasks (Bowers, 1988; Dempsey & Pruchno, 1993; Schwartz & Vogel, 1990). In fact, many family members consider themselves as vital members of the health care team throughout their caregiving careers (Duncan & Morgan, 1994). Nonetheless, although our understanding of issues faced by community-based caregivers has been expanding rapidly over the past decade, our understanding of the roles of family members within long-term care settings is quite limited (Rosenthal & Dawson, 1992). This study sets out to expand our understanding of the institution-based caregiving role by examining the roles of family members in long-term care facilities. Specifically, this study explored the roles of adult daughters caring for a parent with cognitive impairment living in a long-term care facility from their perspectives.
Much of the research on caregiving in the institution-based context focuses on the caregiving experience and on the visitation patterns and task performance of family members in long-term care facilities (see, for example, Aneshensel et al., 1995; Brody, Dempsey, & Pruchno, 1990; Grau, Teresi, & Chandler, 1993; Harper & Lund, 1990; Linsk, Miller, Pflaum, & Vicik, 1988; Riddick, Cohen-Mansfield, Fleshner, & Kraft, 1992; Stephens, Kinney, & Ogrocki, 1991). Very few studies have explicitly examined the roles of family members in institutionalized settings. Of the research that does exist, two approaches to conceptualizing family member roles have been employed. Some researchers (Dempsey & Pruchno, 1993; Rubin & Shuttlesworth, 1983; Schwartz & Vogel, 1990; Shuttlesworth, Rubin, & Duffy, 1982) have used a priori definitions of family member roles based on Litwak's (1977, 1985) structural-functionalist framework, which he called the "Theory of Shared Functions and Balanced Coordination." Consistent with Litwak's framework, these authors conceptualized roles as a set of expectations, specifically a set of tasks, the primary group (e.g., the family) is responsible for in relation to the formal organization (e.g., the long-term care setting). In most of this research, considerable ambiguity was apparent concerning who should be responsible for various caregiving tasks: the family or the staff of the long-term care facility. In many instances, tasks were perceived to be the shared responsibility of both family and staff.
Other researchers have questioned the usefulness of a task-based conceptualization of family caregiving and whether or not it is possible to differentiate roles simply by the specific behaviors or tasks (Bowers, 1987; Turner, 1968). These researchers maintained that roles are "more general gestalts and configurations of meaning about lines of conduct." (Turner, 1991, p. 426) Thus, other gerontologists (see Bowers, 1987, 1988; Duncan & Morgan, 1994) employing more qualitative, inductive approaches have examined how family members themselves define their roles both in the community and in long-term care settings. These authors found that family members did not think of their roles in terms of the tasks that they performed, but viewed their roles in terms of the meaning or purpose they attributed to them: for example, the maintenance or preservation of the older relative's dignity and sense of self (Bowers, 1988; Duncan & Morgan, 1994). An important contribution of these studies is that they have pointed to the diversity in orientation to the caregiving role among any one group of caregivers. Harris (1993, 1998), for example, found four different orientations to the community-based caregiving role among both sons and husbands.
Although the research conducted to date provides some insight into the roles of family members in the long-term care setting context, a few limitations of this research stand out. First, the studies focused on family members of persons living in long-term care facilities either treated samples of diverse types of caregivers as homogeneous groups or only included one type of caregiver, particularly spouses. Although adult daughters make up the majority of familial caregivers in the long-term care setting, very little research has examined the roles of adult daughters in this setting. Further, several authors have noted key differences in responses and approaches to caregiving not only between women and men, and spouses and adult children (Brody et al., 1990; Fisher & Lieberman, 1994; George & Gwyther, 1986; Grau et al., 1993; Harper & Lund, 1990), but also between those caring for persons with physical impairments versus those caring for relatives with cognitive impairment (Clipp & George, 1992; Draper, Poulos, Cole, Poulos, & Ehrlich, 1992; Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). Given that situations and experiences differ for various types of caregivers, Harper and Lund (1990) recommended that more homogeneous categories of caregivers be considered in future analyses. This study, therefore, focused on examining the roles of adult daughters in the care of parents with cognitive impairment living in a long-term care facility.
Second, the majority of the studies conducted to date have conceptualized the term "role" as primarily a unidimensional concept. Researchers have either examined the family members' or staff members' expectations regarding the tasks family members should perform, or have examined family members' perceptions of their role. Interestingly, few studies have looked explicitly at what family members actually do in their role. In the work thus far, the term "role" is rarely conceptualized as a multidimensional concept consisting of both meaning and behavior (for an exception, see Ross, 1991). Turner (1968) noted the general lack of consensus with respect to the meaning of the concept "role" and identified the various ways in which the term has been used. Researchers have used the term to mean: (a) expected behaviors, (b) conceptions of expected behaviors, (c) behavior one learns to play in specific situations, (d) overt behaviors of persons, and (e) norms attached to statuses or positions (Turner, 1968). He argued that conceptualizations of role should not focus on any one of these attributes but should incorporate all into a unified conception of role. He also stressed the importance of considering the qualitative aspects of roles. Thus, a unified, more comprehensive understanding of roles involves an examination of the subjective meaning behind specific roles, as well as the role behavior and role expectations associated with those roles. This study, therefore, sets out to examine how adult daughters think about or define their roles in the institution-based context (role meaning, role expectations), as well as what adult daughters do in these roles (role behavior).
2. Guiding theoretical framework
This research drew on symbolic interactionism and the conceptual framework of the caregiving career. Symbolic interactionists maintain that humans, in this case family members, do not merely passively conform to others' expectations as the task-based approach suggests. Instead, humans actively and creatively construct and modify their roles through interactions in specific social settings based on the meaning that they attach to actions or situations (Turner, 1962). From a symbolic interactionist perspective, caregiving roles are constructed and reconstructed over time in a dynamic and fluid role-taking and role-making process. This role-taking and role-making process includes defining and redefining the situation, interpreting and reinterpreting the behavioral and verbal gestures and expectations of others, and ongoing negotiation processes (Blumer, 1969; Turner, 1962). Further, meaning and behavior are integrally linked (Blumer, 1969; Fife, 1994). The meaning that family members ascribe to their roles both influences and is influenced by role behavior and the activities that a family member may choose to perform.
In order to appreciate the meanings that family members express, it is important to understand the contexts of both behavior and its interpretations (Sankar & Gubrium, 1994). Context, in this study, referred to positionality (Jaffe & Miller, 1994), or the unique personal circumstances or situations of individual family members. Family members bring to the caregiving situation a unique set of interconnected characteristics and unique biographies of experience. They include, for example, stocks of knowledge at hand (Schutz, 1932/1967) such as knowledge from past experiences in the caregiving role, health and physical factors, and life circumstances (e.g., marital status, working status). These varied characteristics and "ordered experiences" are combined and recombined in order to interpret meanings in particular contexts (Turner, 1988). Thus, because family members bring different sets of characteristics to the situation, they may experience and define the caregiving situation differently, and therefore, may develop individualized roles according to their particular situations (Clair, Fitzpatrick, & La Gory, 1995).
This study was informed further by the conceptual framework of the caregiving career to reflect the directions and patterns that the caregiving experience may take over time (Hughes, 1971). Several researchers have described the multiple phases and transitions of the caregiving career in the community (e.g., Given & Given, 1991; Wilson, 1989). The institutionalization of a care receiver represents a pivotal point in a caregiver's career, and the caregiving career often continues to shift within the long-term care context (Aneshensel et al., 1995; Rosenthal & Dawson, 1992; Zarit & Whitlatch, 1992). Each phase in the caregiving career represents only one piece of the entire caregiving career path. Consequently, caregivers at different points in their caregiving careers may think about their roles differently, and in turn, may have different expectations for themselves and may react differently in their role behaviors. As a caregiver travels through each phase and turning point in her or his career, each set of roles will be constantly created and recreated into another set of roles. The career line thus will reflect periods of stability and periods of instability or change.
In a grounded theory study such as this one, these existing theories and assumptions were used to provide a set of initial sensitizing concepts (e.g., meaning, positionality, career phase) and to stimulate "theoretical sensitivity" throughout the project (Strauss & Corbin, 1990). That is, these theories helped guide the researchers in knowing where to begin looking, and sensitized them to the appearance of new concepts that may have appeared, as data were collected and analyzed.
3. Method
A naturalistic method (Lincoln & Guba, 1985) employing the specific techniques of grounded theory methodology (Glaser & Strauss, 1967) was chosen for this study. This approach is consistent with the constructivist theoretical framework guiding the study in that it allowed for the emergence of multiple perceptions or meanings held by the participants themselves (Lincoln & Guba, 1985; Schwandt, 1994).
Following the tenets of maximum variation sampling (Patton, 1990), a combination of selective sampling procedures (Schatzman & Strauss, 1973) and theoretical sampling strategies (Glaser & Strauss, 1967; Strauss, 1987) was used to determine which adult daughters within a long-term care facility in Southern Ontario would be asked to participate in the study. Maximum variation sampling aims at capturing and describing the shared patterns and themes, which cut across participants with varied characteristics experiencing the same phenomenon. It also provides the opportunity to identify and describe the unique variations between the participants (Lincoln & Guba, 1985; Patton, 1990) and search out negative or inconsistent cases in the development of a truly "grounded" theory (Schatzman & Strauss, 1973). This process enhances the credibility of the data and the emergent theory (Lincoln & Guba, 1985). Initially, three criteria were used in the selective sampling to identify potential participants: (1) The family members were adult daughters of residents listed as a primary contact on the resident's admission form; (2) The care receivers all had a cognitive impairment; and (3) The adult daughters were at different points or phases in their institution-based caregiving careers. Some researchers (e.g., Ross, 1991) have suggested that the most turbulent time for family members is the first 6-9 months following the relative's placement. It is during these first several months that family members attempt to adjust to their new circumstances, gain an understanding of the facility, and begin to develop a new role for themselves within the facility. Family members, however, usually adjust to the placement of a loved one within a year (Greenfield, 1984; Powell & Courtice, 1983). The average length of stay in a long-term care facility is approximately 2 years (Teague & MacNeil, 1992). Nonetheless, many family members continue to care for residents in long-term care facilities for much longer time periods. Guided by this information, women who had been caring in the facility for 1-9 months were considered to be in early stages of the institution-based caregiving career; women who had been caring for 10 months to 2 years were considered to be in mid phases; and those caring for more than 2 years were considered to be in the later phases of the institution-based caregiving role.
Theoretical sampling was subsequently used to guide the decisions concerning who else should be included as the study progressed, and new concepts, patterns, themes, and issues emerged that provided greater insights. For example, early in the study, it became clear that women with both parents living defined their roles differently than adult daughters with only one parent living. Thus, other adult daughters with both parents living were sought in order to explain their role perceptions further. A traditional grounded theory approach recommends sampling until theoretical saturation occurs. Data from 38 adult daughters were collected before this had been achieved.
Almost all of the women who agreed to share their stories were over 40 years of age with most being 50 years of age or older. The majority of the women were married and were working full- or part-time. Eighty percent of the women were caring for their mothers. Parents living in the institution ranged in age from 66 to 95 years, the average age being 84.2 years. Finally, the women were split almost evenly among three caregiving career phases: 34.2% were in early phase, 28.9% were in the mid-career phase, and 36.8% were in the later career phase.
Two data collection strategies consistent with a naturalistic, grounded theory approach were employed in this project. First, in-depth, active interviews (Holstein & Gubrium, 1995) were conducted by the first author with all the participants. An initial interview guide was prepared, but as the study progressed, questions were continually revised and additional questions were added, as patterns and themes began to emerge, so they could be explored more fully with other participants. The interviews examined a number of issues related to the caregiving role (e.g., how family members thought about and described their caregiving role within the long-term care facility; expectations...
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