Support Network Transformations in the First Stages ... - SAGE Journals

10.1177/1049732304270813

QUALITATIVE Carpentier, Ducharme HEALTH / ANAL RESEARCH YZING/SUPPORT March 2005 NETWORK TRANSFORMATIONS

Support Network Transformations in the First Stages of the Caregiver’s Career Normand Carpentier Francine Ducharme The purpose of this article is to propose a method to facilitate analysis of the processes involved in the transformation of support networks for caregivers of persons with dementia. The authors are particularly interested in the preliminary phases of the caregiver’s career: the initial period ranging from the first manifestations of dementia to the confirmation of a diagnosis. This method combines the social network approach with narrative analysis. The authors discuss two cases to illustrate the concepts of density and clique to explain the maintenance and dissolution of the caregiver’s supportive relationships. This method shows significant potential, in that it will help researchers explore social mechanisms related to the development of supportive relationships. Keywords: social network transformation; family caregiver; narrative; social processes; methodological issues; Alzheimer’s disease

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ealth care system reform in most Western countries is oriented toward maintaining older persons with chronic health problems in their usual living environment and promoting partnerships between families and services (Chappell & Penning, 2001; Keating, Fast, Connidis, Penning, & Keefe, 1997). With increased life expectancy and the proportional increase in age-related diseases, families are called on to become involved more extensively and over longer periods of time with their immediate elderly relatives. Alzheimer-type dementia is one of the most frequently occurring diseases among older persons, and community-based care for individuals affected by it is generally provided by one person, the principal caregiver, who must gradually seek assistance to deal with an ever-increasing burden of care. However, it has been observed that caregivers of persons with dementia seldom use the services intended to help ease their burden of care (Cox & Monk, 1993; Canadian Study of Health and Aging [CSHA] Working Group, 1994; Gill, Hinrichsen, & DiGiuseppe, 1998; Hamilton, 1996) and that despite the establishment of programs designed to improve their well-being, the effectiveness of the intervention offered remains debatable (Gottlieb & Johnson, 2000; Hébert et al., 2003; Nolan, Ingram, & Watson, 2002; Sörensen, Pinquart, & Duberstein, 2002).

AUTHORS’ NOTE: This research was supported by a grant from the Alzheimer’s Society of Canada (No. 04-46). We are also grateful to the families who agreed to participate in our study for giving so generously of their time. QUALITATIVE HEALTH RESEARCH, Vol. 15 No. 3, March 2005 289-311 DOI: 10.1177/1049732304270813 © 2005 Sage Publications

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These two observations, that caregivers seldom request professional services and when they do contact them, it is difficult to guarantee their effectiveness (Pillemer, 1996), are not reassuring. One of the hypotheses advanced to account for this states that caregivers request services too late, when they are in an exhausted and disorganized state, and such assistance is no longer able to ease their burden or comfort them (Lyons & Zarit, 1999). It is therefore essential to understand how caregivers can establish ties with professionals sooner and thus take preventive measures. In addition, professional intervention might be effective only within a context of normative homogeneity, that is, where convergence of opinions, values, and ways of doing things exists between actors in the informal network (families, friends) and the formal system of care (professionals). An increasing number of studies have focused on phenomena concerning barriers to service use, family reluctance to consult professionals or services, incompatible values between caregivers and professionals, and inadequate or poor coordination of services (Brubaker & Brubaker, 1995; Connidis, 2001; Paquet, 1999; Zarit, Gaugler, & Jarrott, 1999). Nonetheless, such studies are often conducted without a conceptual framework incorporating the multiple phenomena and processes involved. In addition, as analysis of change within caregiver support systems gains in popularity, many questions arise concerning the development of a viable methods able to take complex social events into account. Based on the work of Pescosolido (1991, 1992), we (Carpentier & Ducharme, 2003) have proposed to combine the career and social network approaches to be able to explore several aspects influencing service use and steps taken by caregivers to seek assistance. The purpose of this article is to illustrate a method suitable for analyzing the evolution of caregiver support networks. This method has been developed based on the following research question: Under what conditions and via which processes can caregivers of persons with Alzheimer-type dementia maintain supportive ties with their initial informal network and form (and maintain) new ties with other social actors able to offer them support (family, friends, volunteers, professionals)? The evaluation of the ability of networks to offer care and the analysis of network transformation has been the focus of very few research studies and can provide information that is helpful in the planning of services (Bowling, Grundy, & Farquhar, 1995; Keating, Otfinowski, Wenger, Fast, & Derksen, 2003). As Pearlin, Harrington, Lawton, Montgomery, and Zarit (2001) have pointed out, one of the most important strategies that will influence the course of Alzheimer’s disease is probably the reorganization of the support system offered to the older person and the caregiver. We feel it is essential to analyze the evolution of support systems more closely from this perspective.

CONTEXT: TRANSITION TO THE CAREGIVER ROLE AND THE NEED FOR ASSISTANCE Alzheimer’s disease mainly affects older persons; it develops insidiously and gradually disables a number of social, physical, and cognitive skills in those affected.

Carpentier, Ducharme / ANALYZING SUPPORT NETWORK TRANSFORMATIONS

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The disease can extend over many years and will affect the patient’s family profoundly. The task of caregivers of those with dementia is considered more demanding than that of caregivers of individuals with other health problems, because it demands a greater investment of time and affects practically all aspects of life (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). A caregiver will emerge from within the immediate entourage of a person developing dementia. This person might be a spouse, child, or even a friend (Connidis, 2001). The transition to a caregiver role will inevitably change the life of the person in question, who must constantly renegotiate his or her social relationships in response to the evolution of the disease. In some cases, caregivers will assume the burden of care on their own, at least for a certain period of time, but this solitary involvement will put them at high risk for developing mental and physical health problems. In other cases, caregivers will be able to maintain part of their initial networks, allowing them to maintain their long-term relationships—essential to their identity and equilibrium—and will also be able to create new supportive relationships. In fact, it is difficult to predict how someone will handle his or her caregiving role. According to the hypothesis advanced by Hassulkus (1988), some caregivers would be concerned about protecting the image, identity, or independence of their ill relative. In this context, they would be reluctant to see other persons enter into their private domain and might be inclined to seek help within their informal groups or take care of their ill relative on their own to avoid bringing in people from the outside. To other caregivers, the well-being of their elderly ill relative is important, but the caregiver role must not be assumed to the detriment of obligations related to other social roles. In this context, caregivers would consent to diversify their sources of help. Furthermore, this transition leading into the caregiver role is related to the development of tension and family conflict (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; McAuley, Travis, & Safewright, 1990). Two dimensions related to social roles appear relevant to the study of caregiver relationships. Initially, the caregiver role is often an addition to other existing roles—those related to the family, work, and participation in social life—and coordinating all these roles generates increasing tension (Wallace Williams, Dilworth-Anderson, & Goodwin, 2003). Later on in the caregiver’s career, a “horizontal” type of tension might emerge (Merton, 1968). This type of tension arises when it becomes impossible to maintain the separation between the various roles with respect to the same relationship. The caregiver is obliged to assume the roles of spouse, “nurse,” and “therapist,” and tension increases when the behaviors specific to each role become incompatible. Thus, a caregiver role is adopted within a specific social environment. It is highly probable that a reciprocal influence exists between adjustment to the caregiver role and the availability of social support resources. We therefore propose to analyze the change in support networks using social network and narrative approaches. The analysis of both support systems and their transformation requires that social structure, cultural components, family history, and individual preferences be taken into account (Finch, 1989).

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ANALYZING THE CHANGE: NETWORK AND NARRATIVE Network Approach This approach is based on highlighting existing ties between units (individual or collective actors). Analysis focuses primarily on the relationships between actors, whereas the characteristics or attributes of these actors rank second in priority (Lazega, 1994). The network approach has given rise to two significant changes in direction over the past few decades. First, the study of network emergence and development has attracted growing interest (Edling, 2002; Emirbayer, 1997; McPherson, Smith-Lovin, & Cook, 2001; Suitor, Wellman, & Morgan, 1997). Then, a certain distance was taken with respect to the structural paradigm, thus allowing for greater recognition of the actor. Although keeping the social environment in mind, actors have been assigned a more active role in the construction of their relationships; their creativity and abilities to incorporate knowledge and experience have been acknowledged, enabling them to influence their own outcomes (Thoits, 1995). The network perspective proposes a framework according to which the structural, content-related, and functional aspects are relevant to the understanding of social support (Carpentier & Ducharme, 2003). The ego (the caregiver, in our case) is situated first and foremost within a relational structure measured according to size (the number of individuals with whom the caregiver is in contact), density (the degree of interrelationship between network members), or homogeneity (the similarity between actors according to specific criteria). The structure might also be made up of cliques, that is, subgroups consisting of at least three actors related to one another. This structure forms a context for social action and imposes constraints on actors’ choices. Theoretically speaking, Collins (1988) has maintained that physical density increases group convergence and the intensity of a common emotion, leading to conformity of practice. Dense networks would exert considerable pressure on their members to follow predefined modes of seeking assistance and would also remain more stable over time. Furthermore, as a specific configuration, cliques provide a strong sense of identity and belonging (Scott, 2000). These are subgroups linked via strong, reciprocal ties, in which members generally share standards and values, in addition to a common experience. However, the presence of several cliques within a network, each representing different value systems or specific forms of regulation, might generate tension during periods of crisis, when important decisions must be made. A second aspect of networks involves the content of interactions. A growing number of studies have indicated that caregivers’ attitudes and values influence their choice of certain types of care and account, to a significant degree, for the infrequent use of services (Harrison & Neufeld, 1997; Mui & Brunette, 1994; Kasper, 2000; Pedlar & Biegel, 1999). Pescosolido (1994) has opined that the network approach is particularly suitable for understanding the mechanism via which structure influences attitudes, beliefs, and behaviors. Here, ties between actors serve as vehicles for transferring normative content. Certain forms of networks would therefore lead to the reinforcement of standards, although from a dynamic perspective, it is important to understand how attitudes and beliefs can be adapted to new situations. Therefore, it is important to explore the mechanisms—that is, the


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network entry point—through which new ideas can be introduced to modify attitudes and beliefs. Last, networks possess functional properties. They can offer social support (Caplan, 1976; Connidis, 2001; Shumaker & Brownell, 1984), although certain close social relationships, traditionally associated with support, might generate conflict (Rook, 1992). Conflicted relationships can limit cohesion, restrict the network’s ability to act, and, at the same time, serve as the driving force behind network transformation, either by provoking a severance of ties or stimulating the formation of new alliances. Most networks have regulatory properties, which restore or transform the balance of networks into a continual state of change (Maisonneuve, 1980).

The Narrative Approach The narrative approach serves as an alternative to conventional approaches, recentering the researcher’s interest “away from variables to actors, away from regression-based statistical models to networks, and away from a variable-based conception of causality to narrative sequences” (Franzosi, 1998, p. 527). The use of narrative is often based on the researcher’s willingness to take another look at his or her study subject and, especially, to include the temporal aspect. This approach is intended to be explicitly temporal in its constitutive and explicative logic and allows researchers to obtain information on the evolution of relationships between individuals, thus highlighting continuity and severance of ties (Coleman, 1999; Miller, 1998). Several elements are required to build a narrative that is intelligible and conducive to analysis. First, a narration is a story with a beginning, a middle, and an end (Denzin, 2001). In the situation that concerns us, the beginning of the story corresponds to the first manifestations of illness and the end to the termination of the caregiver role. The latter can occur when the caregiver ceases playing his or her role on a more or less voluntary basis, or on the death of the ill relative. The final event that will be the subject of explanation corresponds to the social and relational conditions in which caregivers come to terms with their involvement with their ill relative (mobilization of assistance resources, state of health). Second, the process involves the determination of relevant events leading to the understanding of the caregiver’s path. These events must be situated within a relational and historical context in which situations interpreted as barriers, opportunities, values conveyed, or means facilitating or limiting social relationships will be determined. Third, events must be inserted into a chronological diagram. The simplest sequential shapes are linear (e.g., decision → action → consequence), although the reality is usually more complex. Poirier, Clapier-Valladon, and Raybaut (1996) discussed “complex” sequences, in which the emotional prevails over the rational, or “ambivalent” sequences, in which contradiction is present. It goes without saying that the evolution of social relationships often involves several parallel processes in which actors can lean toward different or even incompatible options in the interests of the caregiver. It therefore appears essential to take caregivers’ decisions, events, and constraining structural forces into consideration. Fourth, we expect narration in which the narrator’s identity is consistent. The caregiver cannot adopt a role that is contradictory to or incompatible with what is expected of him or her; the way actions proceed must be plausible and consistent with the caregiver’s social role

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(Coleman, 1999). Last, the chronological organization of a story (ordering) remains descriptive and does not provide any explanation of a phenomenon per se. Such an explanation will follow a systematic process of clarification, precision, and expression, enabling the researcher to connect events in relationship to one another (Denzin, 2001; Kohler Riessman, 1993). The proposed explanation will therefore depend on the specific sequencing and internal contingencies of selected events (Griffin, 1992). Thus, we propose a method combining a network analysis and the narrative approach for the purpose of explaining the transformation of support networks for caregivers of persons with dementia.

PROPOSED METHOD Two cases drawn from the first interviews conducted as part of a longitudinal study currently in progress will enable us to illustrate our method. These participants were selected based on their differences, which allows us to highlight certain mechanisms of change more clearly (Juan, 1999). We will describe the caregiver’s support network at the time a diagnosis was determined and then, retrospectively, at the time of entry into the caregiver career. Nolan, Grant, and Keady (1996) documented the importance of taking the initial network into account. In this way, we can determine the available resources, clarify the context and reaction of the immediate environment, and examine issues regarding delays and reluctance to turn to services for assistance.

Data Collection Instrument The proposed approach uses semidirected interviews in which the conversation stimulates the actor to evoke the meaning of his or her actions. The instrument is made up of four sections. The interview begins with open-ended questions to determine the period of onset of the problems being experienced by the ill relative and the period during which the caregiver first began providing care. We also document the caregiver’s past experience in taking care of a dependent. Caregivers are then asked to recount the “story” leading up to the diagnosis, emphasizing the mobilization of assistance resources or the reasons limiting their use. Such resources might originate with the family, friends, community organizations, or professionals. For each resource used, the frequency of meetings with support persons as well as the enthusiasm and interest that the caregiver demonstrated for such assistance are recorded. How the caregiver contacted such resources (especially the persons influencing the decision to turn to such support mechanisms), resources desired, barriers to use of services, and needs with respect to support are also discussed. The third section covers the caregiver’s network at the time of the interview (T1). It involves eight questions based on the name generator developed by van der Poel (1993) identifying the actors providing the caregiver emotional, informational, instrumental, and social support. The caregiver is asked to provide up to 5 names for each question, for a maximum size of 40 actors in the network. These actors might be family members, friends, neighbors, coworkers, volunteers, or professionals. For each network member, the following is requested: sociodemographic information,


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frequency of contact with the caregiver, duration of relationship with the caregiver, place of residence, nature of relationship to the caregiver, ethnicity, and this person’s familiarity with providing care to an older person. The final section of the questionnaire allows us to obtain a description of the caregiver’s social network at the time of onset of the first symptoms experienced by the ill relative with Alzheimer’s disease (T0). Based on the network described at the time of diagnosis, the caregiver is asked to discuss the changes that have occurred in his or her relationships since the onset of his or her ill relative’s disease. For each actor present at the beginning of his or her career, the caregiver is asked to specify the types of support he or she received. The structural aspects as well as the sociodemographic characteristics of network members are also recorded. Throughout the interview, the interviewer must constantly ask whether a given event occurred before or after other events already identified.

Data Analysis Strategy Network Analysis The configuration of caregiver networks is analyzed first (Scott, 2000). Differences between T0 and T1 networks are analyzed in relation to size, density, and homogeneity, which allows researchers to document network variation (loss, stability, or creation of support ties) since the caregiver began his or her career. Then, content analysis allows us to clarify the context and document support tie characteristics (quality, proximity). This analytical procedure is conducted using NVivo software (Bazeley & Richards, 2000) and includes the development of a coding logbook. Categorical content analysis allows us to determine, for all interviews, the central concepts related to the frame of reference (attitudes, conflicts, regulation, etc.). This procedure allows data to be reduced synthetically and sets up the second analytical process.

Narrative Analysis Based on the raw material (the interview), the researcher writes a “compact history” respectful of the narrator’s message but devoid of redundancy and irrelevant elements (Maines, 1993; Poirier et al., 1996). This involves grouping the information into a coherent, chronologically based story. Based on this narrative, four processes are conducted. The first involves identifying the actors named in the narration, including support actors, identified using van der Poel’s (1993) instrument, but also other actors who have participated in decisions or influenced the course of social relationships. A second phase involves identifying the basic events of the narration. These can take the form of statements such as, “My husband could no longer remember things” (rem), or actions, such as “I decided to call the doctor” (cal). The purpose of this is to produce a lexicon incorporating the events deemed essential to understanding the network transformation process. Third, we produce a temporal map incorporating the actors and events. Each actor is inserted into a diagram, and the duration of his or her ties to the caregiver is represented by lines (solid lines for a support relationship, double lines for a nonsupport relationship, and dotted lines when the status of the actor is undetermined). In this chronological diagram, time is

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conceptualized as a series of events and not via dated temporal indicators. Certain events might, nonetheless, have occurred on certain dates (e.g., clinic appointments); the respondent might also introduce time markers (“last Christmas”) or estimate a waiting period (“I waited six months”), but in general, it is practically impossible to determine accurately exactly when a supportive relationship began or ended. The severing of ties to a friend, for example, might be preceded by many attempts to rebuild the relationship. In other cases, relationships will simply fade over time. In the final phase, the researcher interprets the evolution of support relationships. From an interpretative perspective, the significance that an actor assigns to the direction his or her life has taken can be used as a basis to describe and explain his or her actions. The narrative therefore corresponds to a representation that caregivers create regarding the changing nature of their relationships. This process involves identifying the mechanisms linked to development over time, taking into account structural constraints as well as caregivers’ motivations, intentions, and actions. In the next two sections, we will discuss two illustrations of our method. The discussion of these narratives allows us to observe many phenomena involving the dissolution, maintenance, and creation of support ties. However, our interest lies primarily in the maintenance of support ties within a high-density network (Case 1) and secondarily in their dissolution within a network made up of cliques (Case 2). In both cases observed, the initial configuration of the actor’s network appears to influence both the transition to the caregiver role and the transformation of the support network. This research received ethical approval from the Institut universitaire de gériatrie de Montréal Ethics Committee (ref. 2003-0404). We used fictitious names for the two individuals whose cases are presented.

STABILITY OF RELATIONSHIPS WITHIN A DENSE NETWORK (CASE 1) Initial Context Paul, the narrator, lives with his wife. They work in the same establishment and have no children. Paul will become a caregiver, because his mother had been diagnosed with Alzheimer’s disease. The mother is a widow, lives alone in an apartment in the city, and enjoys her country house during the summer. She suffers no significant physical health problems. Paul told us about an event that stood out over the previous 10 years. His father died at home after a long illness, and his family was very involved in his care. His mother “gave a lot of herself” and cared for her husband until she was totally worn out. Then, Paul and his wife took over and cared for his father until his death. Furthermore, Paul was experienced in elder care, as he had worked in hospital settings when he was younger to help pay for his education. He declared that he was very open to receiving professional services.

Network Development Figure 1 represents Paul’s initial support network (T0) and the network established at the time of diagnosis (T1). The initial network was made up of eight individuals at a density of 0.5 and composed principally of family members (family and in-laws).

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FIGURE 1:

Caregiver’s Social Network Transformation (Case 1)

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Paul enjoyed significant support ties with two persons who offered four types of support. After nearly 2 years, the network is relatively stable. The caregiver lost one support tie (given that his mother had developed Alzheimer’s disease) and began a new friendship. This friend provides information on the disease and also serves as a confidante. Four of the eight actors in the current network have experience with a family member suffering from a chronic illness (multiple sclerosis, Alzheimer’s, cancer).

The Narrative Eight individuals affected the variation in the caregiver’s support network (see Figure 2). The first manifestations of the illness were identified by the caregiver and his wife. The mother showed signs of memory loss (mem), and the couple provided her with an increasing level of support; this had already begun following the death of Paul’s father. After Paul’s mother’s wallet was stolen, it became clearer that she was experiencing serious cognitive problems (sto). She was obliged to take tests to obtain a new driver’s license and therefore made a doctor’s appointment (app). Knowing that his mother had made the appointment, Paul had to insist that she inform him of the results. The mother tried to hide the fact that the doctor had detected a cognitive problem (pro). Once he learned that his mother might have memory problems (lea), Paul contacted the doctor to discuss the test results (pro). He then learned that the doctor was about to prescribe medication for his mother without consulting the family, a fact he found surprising. With the family’s involvement, the doctor suggested that the mother be referred to more specialized services to complete the assessment and confirm the diagnosis (ref, apo). During this period, the caregiver and his wife sought closer contact with a female coworker (cow) who had experience with this type of care, as one of her family members suffered from Alzheimer’s disease and was in a nursing home. This woman recommended a memory clinic, and the caregiver took steps to have his mother’s case transferred there. Paul expressed surprise at the complexity of this procedure: “We managed, but others might have given up.” The caregiver severed ties with the doctor because of geographical distance, as the doctor lived near his mother’s country house (dis). Paul estimates that he began assuming his caregiving role one year after detecting the first signs of the disease (rol); he noticed a decreasing level of reciprocity, provided closer supervision, and assisted his mother with several aspects of daily living (transportation, shopping, administration of affairs). At the same time, he attempted to convince his brother that their mother was experiencing cognitive problems and that they must monitor her disease closely. Over the past year, “My brother changed his attitude a lot. We now agree on most points.” From that time on, the family (the two brothers and their wives) mobilized itself, organized family meetings, and shared tasks and decisions (mob). A few months later, the mother eagerly visited the memory clinic, because she was certain that the new tests would refute the preliminary results. She found the 3-month period waiting for the results stressful. The diagnosis of dementia was finally confirmed (dx), which did not surprise the caregiver. The caregiver observed two problems concerning family involvement. First, he noticed that the more his wife participated in his mother’s care, the less commitment his brother demonstrated, and a personality conflict with his sister-in-law

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FIGURE 2:

Mapping of Social Relationships (Case 1)—25 Months

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created a certain tension during family meetings. The caregiver made several decisions (dec). First, his wife tactically disengaged (with her consent) from the process, which led the sister-in-law to stop participating in family meetings and, in turn, increased the brother’s involvement. According to the caregiver, this strategy prevented conflict and provided his mother with assistance in a more efficient manner (con). For the moment, the caregiver feels that the family is providing basic support: “When our mother needs help, we’re there for her,” and no additional help is necessary. The caregiver can count on his wife’s support and obtains information about the disease through his friend. However, he has begun to obtain information from the nurse regarding possible placement for his mother. The caregiver feels that he must develop closer relationships with professional as the disease develops.

Interpretation The network data provide us with information regarding support structure and functions. This is a relatively dense network, almost exclusively family based, with several individuals able to provide various types of support. After 2 years of involvement, the caregiver is still able to maintain many social roles: those related to his caregiver status as well as those related to family and work. The stability of his support network might be explained, in part, by this ability to meet obligations related to these roles, as well as the fact that he does not live with his mother. The narrative analysis provides us with complementary information enabling us to explain this network stability. Within a dense network, the caregiver appears able to play a threefold role. First, he can mobilize resources. The caregiver takes stock of efforts he undertook to make his family, especially his brother, aware of his mother’s problem. With help from the family, the caregiver was able to share the tasks related to care and thus maintain his various social roles. Second, this family group shares a common experience of care, as they provided home care to their father, who died of cancer. The relational proximity, specific to dense networks, allows common experience to be validated, cements ties, and reinforces attitudes toward care. Last, the caregiver explains his desire to maintain family harmony. He expressed his awareness that family solidarity is a central element in the final phase of his ill relative’s disease. With his wife’s agreement, the caregiver employed an active strategy to avoid conflict. These results are consistent with several studies that have determined that density is associated with greater social support, faster internal communication, less use of outside resources, and more stable ties (Broese van Groenou & van Tilburg, 1996; Gottlieb, 1991; Wellman, 1981). However, little research exists that allows us to track the evolution of dense networks, which would allow us to observe the reaction of network members to an increasing burden of care. Following the example of several other studies, we observe that density is linked to a delay in specialized service use despite the fact that the caregiver claims to be open to receiving services. In fact, we are witnessing unusual conditions. On the one hand, the dense and supportive structure of the network encourages the family to take charge; the family members’ experience with their father, who wished to die at home, is an eloquent example. On the other hand, the caregiver has experience with older persons, appears to be open to receiving services, is familiar with nursing homes, as he worked in that setting previously, and is surrounded by persons who have relatives with chronic illnesses


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and who have used services themselves. The network structure leads one to believe that the caregiver will be an infrequent user of services but, at the same time, his attitudes and experience, as well as the attitudes of the network members, appear favorable to service use. It would therefore prove enlightening to follow up on this family.

SEVERING OF RELATIONSHIPS WITHIN A NETWORK COMPOSED OF CLIQUES (CASE 2) Initial Context Claire, the narrator, is the wife of a man whose first signs of cognitive problems appeared 19 months ago. They were both previously married and divorced and have been living together for nearly 15 years. They lived an active life and are currently retired. As a Second World War veteran, the husband receives health care services provided by the veterans’ hospital. Claire stated that she saw a geriatrician in a memory clinic, as a preventive measure, several months before her husband began showing signs of cognitive problems: “As I grow older, I want to be treated by geriatricians because they are specialists.” The husband had previously severed ties with his children, but Claire pressured him to normalize these relationships. The frequency of contact with his family members is still very low. Claire’s attitude toward professionals is somewhat negative: “My husband trusts doctors one hundred percent, but I don’t. Some doctors are unprofessional; they’re just in it for the money.”

Network Development Claire’s initial network (T0) consisted of seven persons, at a density of 0.24, and was divided into two cliques, one made up of family members and the other of friends. The caregiver is surrounded by individuals offering a relatively limited number of types of support (see Figure 3). Of the seven relationships that were part of her initial network, only the relationship with one longtime friend remained by the time her husband’s diagnosis was determined (T1). Three new ties with professionals were created, and these individuals provided information on her husband’s illness, although Claire expressed much appreciation for a social worker in whom she can confide and who has provided her with tangible assistance.

The Narrative The narrative involves 11 individuals (see Figure 4). The husband has experienced physical health problems for several years, and the caregiver feels that she has already been involved in his care for some time. The first signs of cognitive problems began to appear: “He would ask the same questions over and over . . . then he’d become angry” (pro). Claire was cast into the caregiver role when her husband became unable to drive his car (car). In fact, despite numerous physical problems, Claire’s husband had provided their means of transportation, and Clare had been in charge of organizing their social life; a form of reciprocity had been built on these

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FIGURE 3:

Caregiver’s Social Network Transformation (Case 2)

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FIGURE 4:

Mapping of Social Relationships (Case 2)—19 Months

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bases. However, given the danger that her husband’s driving presented, Claire insisted that he stop driving. The social worker at that time played a significant role in convincing the husband to give up driving, and the caregiver appreciated her involvement (con). Today, Claire is puzzled by her own actions. She felt very strongly that her ill relative should stop driving, because she was very fearful, but the loss of the car plunged the couple into isolation. Given her husband’s worsening behavioral problems (wor), the caregiver sought to discuss the matter with his doctor (at the veterans’ hospital) (app). This doctor was rather uncooperative and maintained that her ill relative’s problems were physiologically based: “It’s a circulation problem related to his quintuple bypass.” Dissatisfied with this response, the caregiver asked her geriatrician (ask) for a questionnaire on problems related to dementia, which she passed on to her husband’s attending physician (que). She was obliged to be persistent to convince the latter to fill it out: “I went there in person, I called his secretary” (per). After several weeks, the doctor finally completed the questionnaire and sent it to the geriatrician. This physician finally referred his patient to the geriatrician (ref). The appointment was scheduled for 6 months later, and the caregiver found this too long. During this waiting period, the couple became increasingly isolated. The loss of the car made them unable to visit the caregiver’s family, who lived out of town (fam). The caregiver added that her brother had also developed health problems, which complicated matters: “Our plans kept falling through. . . . We’re alone more often than not.” The couple is now confined to their apartment, and the ill relative spends his days in his pajamas watching television. The caregiver’s increasing involvement in her husband’s care (bur) has also affected her group of friends. The caregiver stated that she belonged to a group of 10 to 12 persons, including 3 close friends. This group’s activities often involved going on outings and celebrating birthdays. The caregiver described her relationships with her friends in several ways. First, she maintained that none of them were close to her: “They were just superficial friends; I wasn’t that close to any of them.” Shortly thereafter she declared, “I’m the one who stepped back . . . my husband was demanding more of my attention.” Last, she stated, “They were asking me a lot of questions; this made me feel very uncomfortable. I felt they were going too far. They wanted to know too much and I wasn’t ready for that.” Within a few months, her relationships with her friends deteriorated and the isolation continued: “Right now, I hardly go out at all; before, I used to go to the theatre” (dis). The caregiver expressed her needs in two ways: She wishes to maintain her independence, but at the same time, the burden of care is weighing more and more heavily on her. It also appears to be very important to her not to disappoint her husband. He always affirmed that Claire did not need to worry about any health problems he might develop, because the veterans would take care of him. However, over time, and as the disease progressed, the ill relative began to distance himself from the veterans, “because he was afraid he would be hospitalized.” Her attitude toward requesting outside assistance has become problematic. The caregiver says that she requires help—“I’d like my husband to be hospitalized for a short time, just so I can have a rest,”—yet, at other times, she declares, “Maybe in the future I’ll need more help, but I want to believe that I can cope with this on my own.” This ambivalence toward outside help is based on her husband’s lack of acceptance of his disease. Last, a special relationship has developed between Claire and the social


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worker, who “gives me more time . . . she came to the house, had a chair installed in the bathtub.” The veterans’ hospital also provides her with homemaker services and respite care. The respite care worker was trained at the Alzheimer’s society, but a relationship of trust has not yet been formed. In fact, the husband resents this “stranger” (the respite care worker). Following the diagnosis (dx), the nurse referred the caregiver to a community organization. The caregiver mentioned that she attended several meetings: “I met some very nice women who have a lot of good qualities.” She plans to attend more such meetings.

Interpretation In this second example, the following contextual factors have obliged the caregiver to adopt a quasi-solo role in her husband’s care: the fact that she cohabits with her ill relative, the loss of her means of transportation, physical health problems, and the infrequent availability of support ties originating from her initial network. Structurally speaking, the two cliques that formed the initial network disappeared once the diagnosis had been determined. How can the dissolution of the group of friends be explained? Note that this clique forms a coherent and homogenous subgroup made up of women who are basically of the same age and focused on social support. For the most part, group unity centers on recreational activity. J. C. Mitchell (1969) has already observed that constant activation of interaction promotes durability of ties. In this case, it appears that the caregiver is no longer able to play the role that would allow her to belong to this group. The narrative allows us to analyze the interactions and dissolution of this group of friends more thoroughly. As the caregiver’s burden grew increasingly heavy, the content of the exchanges between her and her friends changed significantly. This group of friends appears less able to provide emotional and instrumental support to the caregiver, yet this is what she is requesting. The caregiver believes she is “misunderstood, scrutinized and judged” by her friends. The consequences are significant, in that she has lost three support persons. The caregiver shared her thought processes regarding her friends: At times, she feels it is very important to have a group of friends with whom to go on outings and pursue an active life; at other times, she minimizes the importance of this by maintaining that her friends never sought the closeness she desired. In the end, her friends became a source of disruption and anxiety that she could no longer accept. The caregiver retains this image of disruptive relationships to justify and tolerate her isolation. Thus, the caregiver’s various social roles are declining. This process began several years ago, when she left the workforce, and continues now, as she sees her family and friends distancing themselves. Her only remaining role is that of caregiver. Colerick and George (1986) have already observed that caregivers pursue their role because the patient occupies the central place in their lives. This phenomenon might partially explain the caregiver’s ambiguous attitude toward requesting outside assistance. At times, she requests help yet, on other occasions, declares that she is able to perform most of the work herself. This attitude might stem from the fact that she does not want to disappoint her husband, who, in turn, does not wish to be hospitalized. At the same time, too great an involvement on the part of outside services (the establishment of strong ties) would shrink her caregiving role significantly, and this role has become extremely meaningful to her.

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DISCUSSION The simultaneous use of the social network and narrative approaches appears to carry significant advantages. The establishment of networks at various points in the caregiver’s career allows us to clarify the relational structure as well as the nature of the support within which the caregiver evolves. The narrative approach produces an individual representation of social relationships, highlighting the strategies used by actors and providing a complementary explanation of the evolution of the support network. Our approach thus offers a view complementary to the variablecentered method, which seeks to “explain” service use—principally, the hesitancy to use services or inability to reach them—through the use of environmental, psychological, and demographic factors. A relational analysis emphasizes the position of the actors, their relationships and availability, meeting processes, information sources, cognitive pathways, or the diversity of help to explain the differential use of resources. Thus, the researcher must introduce the concept of path dependency, via which a group of temporal factors, often generating a minimal yet distinct effect and stemming from diverse origins, will create conditions that limit possibilities with respect to actions or choices (Griffin, 1993). The “stories” presented here not only allow us to observe, in their social and historical context, the concepts that are familiar in the literature—the burden of care, the quality of caregiver-patient relationships or family conflicts (Lieberman & Fisher, 1999; B. A. Mitchell, 2003)—but also appear to provide a viable means of exploring concepts that are difficult to quantify, such as culture, reciprocity, or social regulation (Carpentier & White, 2002; Kasper, 2000; Neufeld & Harrison, 2000). These concepts appear to be basic to the understanding of social relationships but have not been investigated at the empirical level, nor have they produced the results expected when incorporated into a factor-based approach (Kasper, 2000; B. A. Mitchell, 2003). The use of a narrative approach also enables the researcher to question an orientation that would make the “rational choice” approach the basis for caregiver decisions. Rather, our results indicate the importance of negotiated solutions, opportunities offered to the caregiver, or circumstances that facilitate or constrain choices. Last, by considering all social relationships (beyond the caregiver/ patient dyad or the caregiver/patient/professional triad), we can thus consider the way in which individuals refer to the lay, folk, and formal healing systems (Pescosolido & Kronenfeld, 1995). The variation in social relationships pertaining to the cases cited here has been identified and analyzed from two perspectives. First, we determined, via the instrument developed by van der Poel (1993), the support network at various points in the caregiver’s career. Then, based on the narratives, we developed a more detailed portrait of social relationships by identifying the persons who were active between the observation periods, those perceived as nonsupportive (ambiguous status, source of conflict), or those in transition toward a supportive role. This strategy nonetheless requires justification. We could have used another method to delineate the caregiver’s network. For example, an interactional approach (van der Poel, 1993) encompasses a wider range of actors, but this procedure, which might identify numerous individuals, often complicates the interview and analysis process. It appeared more productive to obtain in-depth information on a restricted number of support persons and allow the narrative analysis to clarify and nuance the other


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relationships. Our approach seems especially useful for observing the emergence of new support ties, especially those of an emotional nature. We were able to observe, in the cases cited here, that these ties are formed gradually, and are based on shared values and similar ways of acting. The process of building relationships of trust usually takes time. The narrative approach is part of a pluralist, relativist, and subjective orientation, but this does not mean that researchers are exempt from providing a description of their process, a consistent and systematic rationale for methodological choices, and a clear presentation of the processes that gave rise to the research findings. They must also be aware of biases that might be introduced at different phases of the analytical process. First, the biographical interview allows the researcher to access a fairly lengthy period in a person’s life. Furthermore, the narrator will have the luxury of selecting a certain version of his or her story. The researcher thus gathers material that the narrator has already used to order, validate, hierarchically classify, reject, or devalue certain aspects of his or her life (Lalive D’Épinay, 1983). In addition, by conducting an interview using a semidirected approach, the investigator orients the story, asks questions, and focuses on certain aspects—he or she becomes, in some ways, the coauthor (Poirier et al., 1996). An interviewer-narrator interaction effect also comes into play. Second, by transforming an oral form into a knowledge-generating form, the researcher must select elements that will constitute the final story. In short, the narrative became mostly the analyst’s creation (Griffin, 1992). Last, the explanation of this phenomenon is another phase that requires constant attention on the part of the researcher, who must conduct a systematic process so that events position themselves in relation to each other within a temporal framework. Thus, the building of an argument allowing for an explanation of the transformation is permissible via the in-depth knowledge of the cases studied. The basic task, developing sequences, refers back to the analyst, to his or her judgment; he or she is the one who must structure and interpret events and pathways. This work of interpretation and comprehension must be done while taking three closely related elements into consideration: (a) the raw material reconstituted into a narrative, (b) the theoretical frame of reference, and (c) reflexive monitoring of researchers’ reading and interpretation (Lieblich, Tuval-Mashiach, & Zilber, 1998). The validity of the theoretical construct resulting from the narratives depends on how strictly the researcher interprets the relationship between these three elements. The researcher must move constantly between data and abstract concepts, description and interpretation, complex reality, and the simplification of the proposed model. Several measures must therefore be adopted to guarantee the quality of data collected and the analytical procedure. Firstly, the caregiver should be questioned at several points in his or her career, thus allowing the researcher to reduce memory bias associated with a story that might span several years. Second, several researchers should be involved in the process of coding and analysis. It would also be wise to have a second researcher reprocess the data completely, in some cases, based on the raw material. Third, the conducting of several interviews allows us to produce better analytical materials. Some stories can be limited by the narrator’s expressive ability, emotional or ideological resistance, or the quality of the interview (Juan, 1999). Fourth, a thorough reanalysis of complete narratives tracing the caregiver’s entire career could be conducted using ETHNO software (Heise, 1991). This software assists the analyst in determining links between events. Such a procedure is

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appropriate at an advanced stage of a qualitative study and requires mastery of the research subject (Griffin & Ragin, 1994; Heise, 1991). Last, the introduction of the network approach in the narrative analysis allows data to be triangulated. Bourdieu (1986) suggested caution regarding the use of various life story methods as the sole producer of meaning. In fact, the individual is not really in a position to render an accounting of the processes and actions he or she generates and of which he or she is a part. Bourdieu suggested a reciprocal exchange between the individual’s story and other, more formal analytical elements. The use of the social network approach diversifies observation techniques and frames the analysis of the help-seeking process more formally.

CONCLUSION The principal objective of this article was to discuss a method combining the social network and narrative approaches to explain variations in caregivers’ support networks. These two well-established approaches to data collection and analysis appear to complement each other: network analysis provides a clear description of social relationships at various points in time, and narratives demonstrate how emotional, social, and psychological processes reshape networks and caregiving outcomes. Furthermore, we believed that this method could be a useful tool for theory building based on case studies (Eisenhardt, 1989). By integrating two ways of examining caregivers’ circumstances, this method provides a deeper understanding of single cases, but the next step will involve the development of cross-case analysis to search for patterns. In other words, how can this approach be used to describe a series of cases and generalized in a broader way that can be useful to both researchers and care providers? The theoretical development of this method is still in its infancy and will benefit from studies in other areas of research involving network mobilization as an essential part of community care. Our approach will also require some refinement to analyze long-term caregiver careers. In fact, the caregiver role can span many years, and we have, for the moment, in the two examples discussed, a partial history that stops at the time a diagnosis is determined. This type of study could serve to sort out the different factors that influence the caregiver career, such as the initial network, the caregiver’s coping skills, and the work of community organizations, to cite just a few examples. Social policy intended to maintain older persons in the community is based on the establishment of support ties with various resources providing assistance, although very little information is currently available regarding the processes that create and maintain support ties for caregivers. To deal with the increase in chronic illness, one of the health care system’s responses was to develop integrated care programs, improve training for those involved in care delivery, and reorganize services or diversify the actors better to meet the needs of families (Ducharme, Lebel, & Bergman, 2001). However, it is not known if the adjustment or deployment of resources—actual or desired—influences caregiver well-being. Despite the fact that informal systems represent the most significant source of care for older persons, we must acknowledge that we know very little about this “front line” of care providers (Chappell, 1992; Pillemer, 1996).


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Normand Carpentier, Ph.D., is adjunct researcher in the Department of Sociology, Université de Montréal, and a researcher at the Institut universitaire de gériatrie de Montréal, Quebec, Canada. Francine Ducharme, Ph.D., is professor (professeur titulaire) of nursing and a researcher at the Institut universitaire de gériatrie de Montréal, Quebec, Canada.