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Community Mental Health Journal, Vol. 36, No. 3, June 2000

The Caregiver’s Perception of Behavioral Disturbance in Relatives with Schizophrenia:

A Stress-Coping Approach

Helene L. Provencher, Ph.D. Jean-Pierre Fournier, M.D., FRCPC Michel Perreault, Ph.D. Jean Vezina, Ph.D.

ABSTRACT: This article suggests some theoretical orientations in studying behavioral disturbance from a stress-coping perspective. First, an overview of Lazarus and Folk- man’s cognitive theory of stress is presented. Secondly, some linkages are proposed between the rating scales used to measure behavioral disturbance and the concepts of this theory. Future research directions are then suggested to further explore the af- fective, cognitive and behavioral responses related to the management of disturbing behaviors.

The management of disturbing behaviors is a demanding task for the caregivers of persons with schizophrenia (Lefley, 1996). Over the last twenty years, several instruments have been developed to measure the concept of behavioral disturbance (Provencher, Fournier, Perreault, & Vezina, 2000). A variety of rating scales have been applied to a set of patient behaviors, such as those evaluating the frequency and severity

Helene L. Provencher is Associate Professor, Faculty of Nursing, and Jean-Pierre Fournier is Clinical Associate Professor, Department of Psychiatry, both at Laval University, Centre de Recher- che, Universite´ Laval-Robert Giffard. Michel Perreault is Research Associate at Douglas Hospital and Assistant Professor, Department of Psychiatry, McGill University. Jean Vezina is a Professor, School of Psychology, Laval University. Address correspondence to H.L. Provencher, Ph.D., Faculty of Nursing, Laval University, Que´bec, Canada, G1K 7P4; e-mail: helene.provencher@fsi.ulaval.ca.

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2000 Human Sciences Press, Inc.

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of behaviors, the degree of being disturbed or feeling distressed by the behaviors, or the extent of the perceived ability to cope with them. The caregiver’s subjective evaluation of patient behaviors has recently been emphasized in the development of new self-report measures on behav- ioral disturbance, which is germane to stress-coping approaches. Unfortunately, the mechanisms underlying the management of dis- turbing behaviors still remain poorly understood from a stress-coping perspective (Lazarus & Folkman, 1984; Pearlin, Mullan, Semple, & Skaff, 1991). Although patient behaviors have been clearly identified as stressors for the caregivers, the appraisal and coping processes related to them have been overlooked in the caregiving literature. Another gap has been the lack of attention in differentiating, from a stress-coping approach, the variety of rating scales assessing patient behaviors. Link- ing these different scales to the specific concepts belonging to the process of stress-coping would provide a better understanding of the cognitive, affective and behavioral responses to patient behaviors. In addition, the identification of the scales sharing common theoretical linkages to the stress-coping process would make comparisons across studies easier. The goal of this paper is to propose some theoretical orientations to the study of behavioral disturbance from a stress-coping perspective. First, a brief overview of Lazarus and Folkman’s (1984) theory will be presented. Second, some linkages will be proposed between the rating scales of behavioral disturbance instruments and the theory concepts. Finally, some future research directions on behavioral disturbance will be suggested within this stress-coping theory.

LAZARUS AND FOLKMAN’S THEORY OF STRESS-COPING

Based on this stress-coping theory, stress is defined as “a relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being” (Lazarus & Folkman, 1984, p. 21). This cognitive-relational definition of stress is based on two processes: cognitive appraisal and coping. The appraisal and coping processes rely upon five major con- cepts: event, appraisal, coping, immediate effects, and long-term effects. These concepts and their interrelationships are shown in Figure 1. The event corresponds to the occurrence of a potential stressor in the person’s constructed reality. The perception of this encounter represents the starting point of the appraisal and coping processes.The perceived

Helene L. Provencher, Ph.D., et al.

FIGURE 1

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Theoretical Model of the Stress-Coping Process (Folkman, 1997; Folkman et al., 1991; Lazarus & Folkman, 1984)

1997; Folkman et al., 1991; Lazarus & Folkman, 1984) frequency and severity of the encounter are

frequency and severity of the encounter are relevant empirical indicators of the event (Lazarus & Folkman, 1984). The appraisal process brings meaning and emotional quality to the encounter. This process is subdivided into two interdependent compo- nents: primary and secondary appraisals. Through primary appraisal, the person determines the significance of a specific encounter on his or her well-being. The central issue for the person is to clarify “What do I have at stake in this encounter” (Folkman & Lazarus, 1988, p. 310). An encounter can be appraised as irrelevant, benign-positive, or stressful (Lazarus & Folkman, 1984). Resulting from the primary appraisal, a “potential” stressor may then be perceived as a “real” stressful one. The secondary appraisal is concerned with the person’s evaluation of the resources and options that are required for coping with the encoun- ter. The main concern for the person is then: “What can I do? What are my options for coping and how will the environment respond to my actions?” (Folkman & Lazarus, 1988, p. 310). Therefore, the notions of perceived ability to cope and changeability of the encounter are relevant to the evaluation of secondary appraisal (Folkman et al., 1991). The appraisal of the encounter is influenced by antecedent person characteristics and environmental variables (Folkman & Lazarus,

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1988). The former corresponds to an array of variables, including psycho- logical (e.g., values, beliefs, problem-solving skills), sociological (e.g., cultural background, socio-economic status), health (e.g., medical his- tory), and contextual variables (e.g., family or sociopolitical conditions) (Folkman et al., 1991). Environmental variables refer to the nature, imminence, ambiguity and duration of the encounter and to the avail- ability of resources to facilitate with coping (Folkman & Lazarus, 1988). Among them are social resources (e.g., perceived social support), mate- rial resources (e.g., person’s income), and institutional and political resources (e.g., health care agencies, consumer groups) (Folkman et al., 1991, 1994). Finally, an encounter first appraised as unchangeable or stressful may be reappraised as changeable or benign, and vice versa (Folkman et al., 1991). This is based on the assumption that the person “constantly evaluates changes in the person-environment relationship” (Folkman et al., 1991, p. 245). The process of reappraisal is then likely to be influenced by changes in the person (e.g., acquisition of new skills) or changes in the environment (e.g., lack of accessibility to support services). Coping is defined as the person’s constantly changing cognitive and behavioral efforts to manage (master, reduce, or tolerate) an encounter appraised as stressful (Folkman & Lazarus, 1985). Coping serves two major functions: to regulate distress (emotion-focused coping) and to do something to change for the better the stressful encounter (problem- focused coping). Examples of emotion-focused forms of coping are using social comparisons and doing relaxation exercises to make oneself feel better. Examples of problem-focused forms of coping are problem-solving strategies and seeking information. Neither emotion-focused or prob- lem-focused forms of coping are superior in terms of their adaptative values. However, when an encounter is appraised as unchangeable, emotion-focused coping strategies are likely to be predominantly used. In contrast, when an encounter is appraised as changeable, problem- focused coping strategies are likely to be predominantly selected over emotion-focused ones (Folkman et al., 1991). Immediate effects and long-term effects are generated as the processes of appraisal and coping unfold (Lazarus & Folkman, 1984). Immediate effects are of two types, event outcome and emotion outcome. Event outcome corresponds to the resolution of the encounter that results from the coping process. Resolution can be favorable, unfavorable, or absent. Emotion outcome refers to positive and negative emotion (Lazarus & Folkman, 1984). Long-term effects refers to three major classes of adapta- tional outcomes: social functioning, morale, and somatic health. Respec-

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tively, they correspond to effective, affective and physiological outcomes (Lazarus & Folkman, 1984). Social functioning reflects “the effectiveness with which the demands of a specific encounter are managed” (Laza- rus & Folkman, 1984, p. 183). Morale corresponds to the “positive and negative affect a person experiences during and after an encounter” (Lazarus & Folkman, 1984, p. 183). Somatic health refers to the physio- logical changes that are generated by the encounter. A favorable resolution concludes the coping activity, and leads to positive emotion (e.g., happiness) and beneficial long-term effects. In contrast, an unfavorable resolution or no resolution, calls for additional coping efforts and generates negative emotion (e.g., distress) and detri- mental long-term effects (Lazarus & Folkman, 1984). Recent refine- ments in the theory have been proposed taking into consideration the role of positive psychological states in persons confronted with enduring stressful situations (Folkman, 1997). Three additional pathways are suggested for positive emotions in the stress-coping process. The first and second pathways indicate that positive emotion is the result of a new meaning attached to the coping situation, which is itself secondary to unsatisfactory event outcomes (e.g., unfavorable or no resolution) or negative emotion (e.g., distress). In the first pathway, meaning-based coping consists in reframing the encounter into a positive perspective (e.g., positive reappraisal), revisiting personal goals and planning coping strategies that bring meaning through the enhancement of a sense of personal control, and relying on spiritual beliefs and practices to find existential meaning. The coping activity is directed to the encounter itself and both problem-focused and emotion-focused strategies are used. In the second pathway, meaning-based coping refers to reframing ordi- nary events into meaningful and positive ones. The coping activity here is directed to the relief of the distress provoked by the unfavorable or no resolution of the encounter, and emotion-focused strategies are predominantly selected.

LINKAGES OF BEHAVIORAL DISTURBANCE INSTRUMENTS TO LAZARUS AND FOLKMAN’S THEORY OF STRESS AND COPING

Based on this theory of stress-coping, behavioral disturbance is concep- tualized here as a stress phenomenon in which the appraisal and coping processes are central. More specifically, the concept of behavioral dis- turbance can be re-defined as a person-situation transaction in which

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the patient behaviors are appraised by the caregiver as taxing his or her resources and mobilizing his or her efforts to cope with them. The specific context in which the management of the patient behaviors takes place, is thus highlighted, which is congruent with the theory. Guided by the theoretical definitions of the five concepts (Lazarus & Folkman, 1984), three of them can be specifically linked to the rating scales used to measure behavioral disturbance. The concepts of the theory are: event, appraisal, and immediate effects. The rating scales are those measuring the perceived frequency and severity of the patient behaviors, the degree of being disturbed by the behaviors, the degree of feeling distressed by the behaviors, and the extent of the perceived ability to cope with the behaviors. The specific linkages between the rating scales and the concepts of event, appraisal, and immediate effects are represented in Table 1. Considering that two types of rating scales have been frequently applied to the same set of behaviors in several instruments, each instrument can thus be linked to more than one theory concept.

Event

The scale of perceived severity of patient behaviors (Creer & Wing, 1975; Platt, Weyman, & Hirsch, 1983) and the scale of perceived frequency of patient behaviors (Barrowclough & Tarrier, 1987; Biegel, Milligan, Putnam, & Song, 1994a; Biegel, Song, & Chakravarthy,1994b; Creer & Wing, 1975; Gopinath & Chaturvedi, 1992; Hewitt, 1983; Hoult, Rey- nolds, Charbonneau, Coles, & Briggs, 1981; Levene, Lancee, & Seeman, 1996; Mueser, Webb, Pfeiffer, Gladis, & Levinson, 1996; Reinhard, 1994; Runions & Prudo, 1983; Szmukler et al., 1996; Tessler, 1989) can both be linked to the concept of event. This is justified by the fact that these two rating scales serve to document the “reality” of the encounter (patient behaviors) as perceived by the caregiver. Because they do not provide any information about the caregiver’s meaning of the patient behaviors, they cannot be considered as an appraisal. Rather, they are “plain” indicators of the caregiver’s personal observations of the occurrence of patient behaviors.

Appraisal

The extent of being disturbed by the patient

behaviors (Hatfield, 1978; Hewitt, 1983; Lefley, 1987; Levene et al., 1996; Reinhard & Horwitz, 1995; Runions & Prudo, 1983; Wykes &

Primary Appraisal.

TABLE 1

Linkages of the Rating Scales in Behavioral Disturbance Instruments to the Concepts of Event, Appraisal, and Immediate Effects

Event

Appraisal

Secondary

Immediate Effects

 

Primary

Ability

Positive

Negative

Concepts

Frequency

Severity

Stressfulness

Changeability

to Cope

Emotion

Emotion

Rating Scales

Perceived

Perceived

Degree of

None

Ability to None Cope

Distress

Frequency

Severity

Disturbance #2, #4, #6, #7, #9, #14

Instruments (#)

#1, #3, #4, #6, #8, #10, #11,

#1, #5

#8

#5, #8,

 

#11, #15

#12,

#13,

#14,

#15, #16

#1. Questionnaire on Disturbing Behaviours (Creer & Wing, 1975); #10. Family Burden: Module on Behavioral Disturbance (Tessler, 1989) #2. Survey on Disturbing Behavior Instruments (Hatfield, 1978) #11. Scale for Assesment of Family Distress (Gopinath & Chaturvedi, #3. Questionnaire on Problematic Behaviors (Hoult et al., 1981) 1992) #4. Schedule on Deviant Behaviour (Hewitt, 1983) #12. Client Behavioral Problems (Biegel et al., 1994a,b)

#5. Social Behavioural Assessment Schedules Section on Behavioural Disturbance (Platt et al., 1983)

#6. Questionnaire on Problem Behaviors (Runions & Prudo, 1983) #15. Questionnaire on Burdensome Behaviors (Mueser et al., 1996) #7. Social Behavioral Schedule (Wykes & Sturt, 1986) #16. Experience of Caregiving Inventory: Sections on Difficult behaviors

#8. Family Questionnaire (Barrowclough & Tarrier, 1987) and Negative Symptoms (Szmukler et al., 1996) #9. Questionnaire on the Psychological Burden of PatientsBehavior to Families (Lefley, 1987)

#13. Client Behavior Scale (Reinhard, 1994; Reinhard & Horwitz, 1995) #14. The Perceived Family Burden Scale (Levene et al., 1996)

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Sturt, 1986) can be linked to the evaluation of primary appraisal. Al- though this scale does not specifically assess threat, challenge, or harm,

it does provide a cognitive evaluation of the stressfulness of the encoun-

ter through the evaluation of the disturbance that the caregiver is per- ceiving toward his or her well-being, which is in accordance with primary appraisal.

Secondary Appraisal. The linkage between the scale of perceived ability to cope (with patient behaviors) (Barrowclough & Tarrier, 1987) and the concept of secondary appraisal is rather obvious. The persons self-evaluation of his or her capacity to apply a particular coping strategy

or a set of coping strategies is effectively measured by this type of scale.

It does measure the caregivers perception of what can be done,which

is germane to secondary appraisal.

Immediate Effects

Negative Emotion. The extent of feeling distressed by specific pa- tient behaviors (Barrowclough & Tarrier, 1987; Gopinath & Chaturvedi,

1992; Mueser et al., 1996; Platt et al., 1983) can be linked to the concept of immediate effects,and more specifically to emotion outcome.This type of scale has been used to measure the extent of perceived distress in relation to each behavior displayed by the patient. It corresponds to

a molecular levelof assessment of emotion, which is consistent with

Lazarus and Folkmans (1984) view on short-term emotion outcomes. In summary, most of the instrumentation in behavioral disturbance has focused mainly on the subjective evaluation of the event itself (pa- tient behaviors) in terms of its frequency or severity. Primary appraisal has received some research attention through the evaluation of the degree of disturbance. An important gap is the lack of valid and reliable information on the secondary appraisal of patient behaviors. In addition, the immediate effects have been mostly limited to the emotional distress elicited by the patient behaviors. Thus, a narrow range of negative emotions has been the target of behavioral disturbance instruments while the positive emotions attached to those behaviors have been largely ignored.

FUTURE RESEARCH DIRECTIONS

A large number of behavioral disturbance instruments are now available

to researchers (Provencher et al., 2000). The linkages of the available

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rating scales to concepts belonging to Lazarus and Folkmans (1984) theory provide a theoretical basis for distinguishing them. Depending on the research aims, some guidelines will be offered for selecting those instruments specifically linked to the concepts of event, appraisal, and emotion outcome (see Table 1). Some future research directions will also be suggested for a better understanding of behavioral disturbance from a stress-coping perspective.

Event

For those whose study interest is in documenting the prevalence of patient behaviors (event), the following instruments are appropriate:

#1, #3, #4, #6, #8, #10, #11, #12, #13, #14, #15, and #16. Although these instruments do not measure the caregivers cognitive responses, they do provide useful information about those specific behaviors that they encounter. Additional work is needed to further explore the possible multidimensional nature of perceived behaviors and to precise the ap- praisal and coping processes related to behavioral categories (Proven- cher et al., 2000).

Appraisal

Primary Appraisal. If the purpose is to target those patient behav- iors that are significant to the caregivers (primary appraisal), then the following instruments should be considered: #2, #4, #6, #7, #9, and #14. Further research is necessary to verify the theoretical distinction between the perceived frequency of behaviors (event) and their degree of disturbance (primary appraisal). There is some empirical evidence pointing out that the most frequent individual patient behaviors are not necessarily the same as those that are perceived as most disturbing (Provencher et al., 2000), thus possibly reflecting some differences in their appraisal and coping processes. More research is also required to compare valid and reliable categories of patient behaviors in terms of their prevalence and level of disturbance.

Secondary Appraisal. The Family Questionnaire (Barrowclough & Tarrier, 1987) is recommended for those investigating the perceived ability to cope with the patient behaviors. Additional research is clearly needed to better understand the role of secondary appraisal in the management of disturbing behaviors. One possible avenue of research is to explore the concept of efficacy expectations (Bandura, 1977) as

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part of the secondary appraisal (Lazarus & Folkman, 1984) and apply it to disturbing behaviors. In particular, more knowledge is needed

about the efficacy expectations (e.g., I am able to do the things needed to cope with the behavior) related to distinct categories of behaviors.

A second avenue of research is the systematic evaluation of the per-

ceived changeability of each patient behavior. While the patients own

perception of the changeability of his or her symptoms has been ad- dressed in relation to coping strategies (Wiedl & Scho¨ttner, 1991), this dimension of secondary appraisal has been neglected from the caregiv- ers perspective. Its evaluation will allow for testing the assumption that emotion-focused and problem-focused coping do vary in function of the perceived changeability of the encounter (see Figure 1).

A third avenue of research is the study of causality, responsibility,

and blame attributed to the patient for the occurrence of disturbing behaviors, as additional components of secondary appraisal. While causal attribution corresponds to the factors that produce an event,responsibility attribution implies a judgment regarding an individuals accountability for the event,and blame attribution refers to an evalua- tive judgment concerning the implicated individuals liability for censure (Bradbury & Fincham, 1990, p. 18). An orderly sequence, or entailment process, has been suggested for the three types of attributions, that is, a blame attribution presupposes a judgment of responsibility, which rests upon the determination of causality (Bradbury & Fincham, 1990; Shaver, 1985). Lazarus and Folkman (1984) treated causal attributions as cold cog- nitionsand considered them as nonrelevant components of the ap- praisal process. However, the caregivers efforts to understand the occur- ence of the patient behaviors in identifying their related causes and in determining the patients accountability and liability for sanction for them are meaningful attempts to answer the fundamental questionwhy are those behaviors happening?The proposed entailment model for the three types of attribution highlights, in particular, the caregivers evaluative judgment about the patient behaviors, which is a major di- mension in clinical interventions aimed at the effective management of disturbing behaviors (Kanter, 1984). Causal attributions have been investigated mainly in high and low expressed emotion families. Relatives who considered the causes of prob- lem behaviors to be personal to the patient and controllable by him or her tended to be more critical and/or hostile toward the patient (Barrowclough, Johnston, & Tarrier, 1994; Brewin, MacCarthy, Duda & Vaughn,1991; Weisman, Lopez, Karno, & Jenkins, 1993). For behavioral

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categories, caregivers who interpreted the negative symptom behaviors as part of the patients personality had the tendency to expect more change from him or her and were more likely to use coercive strategies (e.g., critical comments) to control these patient behaviors (Greenley, 1986; Harrison & Dadds, 1992; Hooley, 1987). Additional work is needed to better understand the responsibility and the blameworthiness attrib- uted to the patient for distinct categories of behaviors as well as to verify the relevance of the entailment process within the specific context of managing disturbing behaviors.

Immediate Effects

If the purpose of the study is to explore the negative emotional conse- quences of patient behaviors on the caregivers (immediate effects), then the following instruments are relevant: #5, #8, #11, and #15. More consideration should be given to the assessment of a wider range of stress emotions in relation to individual and categories of patient behav- iors, such as anger, shame, sadness, disgust, anxiety, and sympathy (Lazarus, 1993).

Middle-Range Theories on Behavioral Disturbance

The proposed conceptualization of behavioral disturbance as a person- environment transaction puts a strong emphasis on the specific context in which the caregiver is managing the patient behaviors. In this vein, additional middle-range theories need to be tested taking into account the antecedent person and environmental variables related to the ap- praisal and coping processes. More specifically, some contextual ele- ments of the caregiving relationships deserve more research attention, including the type of caregiving relationship (e.g., parent, spouse, sib- ling) (Jones, 1997), the co-resident caregiving (Seltzer, Greenberg, Krauss, & Hong, 1997), the informal and formal social support perceived by the caregiver and the patient (Estroff, Zimmer, Lachicotte, & Benoit, 1994; Greenberg, Sletzer, & Greenley, 1993), and the forms of care practices (Chesla, 1991). Also relevant to both appraisal and coping processes are the family and illness characteristics, such as family cul- tural background (Stueve, Vine, & Struening, 1997), family life cycle (Cook, Cohler, Pickett, & Beeler, 1997), age at the onset of the illness, illness severity and duration of illness, and patient compliance to treat- ment regimen (Cook et al., 1997; Lefley, 1996). The reappraisal of patient behaviors also merits more consideration, especially light of its role in

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the development of resilience in caregivers and in the reshaping of the coping situation into a more satisfying experience (Mannion, 1996; Marsh et al., 1996). Finally, given that the theory of Lazarus and Folk- man provides an intraindividual perspective of stress (Lazarus & Folk- man, 1984), the interactional processes between family members in- volved in the management of patient behaviors are better addressed by theories that are more system-oriented, such as the Resiliency Family Model (McCubbin & McCubbin, 1996). In summary, although the concept of behavioral disturbance in schizo- phrenia has been studied for more than two decades, its development has been somewhat atheoretical. The theory of Lazarus and Folkman is of heuristic value for uncovering the complex caregivers responses to behavioral disturbance in relatives with schizophrenia. Additional empirical work is required to better understand the appraisal and coping processes related to patient behaviors from the perspective of the care- giver.

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