Psychosocial Adaptation to Epilepsy: The Role of Coping Strategies

Epilepsy & Behavior 2, 533–544 (2001) doi:10.1006/ebeh.2001.0284, available online at http://www.idealibrary.com on

Psychosocial Adaptation to Epilepsy: The Role of Coping Strategies Hanoch Livneh, 1 Lisa M. Wilson, Angelina Duchesneau, and Richard F. Antonak* Portland State University, Portland, Oregon 97207; and *Indiana State University, Terre Haut, Indiana 47809 Received June 15, 2001; revised September 25, 2001; accepted for publication October 1, 2001

This article begins by reviewing the literature on the concept of psychosocial adaptation to impairment among persons with epilepsy. Particular attention is devoted to those roots reasoned to lie at the base of psychosocial problems manifested by people with epilepsy. The research literature on coping with epilepsy is then reviewed in two areas: (a) general coping styles and their relationship to psychosocial adaptation, and (b) specific coping strategies and their association with adaptation to epilepsy. Next, clinical implications of these findings are briefly outlined. The article concludes with a discussion of research limitations identified in the conceptualization and measurement of coping, followed by suggestions for future research on coping and adaptation to epilepsy. © 2001 Elsevier Science Key Words: psychosocial adaptation; coping styles and strategies; epilepsy; measures of coping and adaptation.

COPING WITH CHRONIC ILLNESS AND DISABILITY

The role played by psychosocial coping strategies, in adapting to life stresses engendered by epilepsy and its many vicissitudes, has received growing interest in the recent epilepsy literature. A review of the medical and psychological literatures indicates that before the mid-1980s, no focused attention was paid to the role of coping in the lives of people with epilepsy. In the past 15 years, however, a burgeoning corpus of literature on the topic has started to accumulate. The aim of this article, accordingly, is threefold. First, the generic nature, type, and classification of coping with chronic illness and disability are highlighted. Second, the psychosocial sequelae associated with the onset and diagnosis of epilepsy are briefly reviewed. Finally, the literature on coping with epilepsy is summarized, followed by recommendations for psychosocial interventions and research considerations.

Historically, coping theory and research can be traced to their earlier roots of psychoanalytic theorizing. However, as distinctions were gradually recognized between defense mechanisms and coping strategies (1–3), the study of coping took a sharp turn during the 1960s and early 1970s toward establishing its own unique body of literature. Foremost among the contributors who defined and vitalized the newly formed specialty were Lazarus and his co-workers (4, 5), Moos and his co-workers (6, 7), and Krohne (8). These researchers, unlike their more trait-oriented predecessors, emphasized the study of coping processes (mostly conscious), coping cognitions and behaviors, and the contextual (i.e., situational) determinants within which they are invoked (9). Lazarus and co-workers (5, 10) further argued for the existence of two broad coping categories, namely, problem-focused coping, which focuses on minimizing or resolving the stressor itself, and emotion-focused coping, which refers to efforts directed at affect regulations or

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To whom correspondence should be addressed at Rehabilitation Counseling Program, Graduate School of Education, Portland State University, PO Box 751, Portland, OR 97207. E-mail: [email protected]. 1525-5050/01 $35.00 © 2001 Elsevier Science All rights reserved.

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534 emotional responses to the stressor. More recently, coping researchers (11, 12) argued for the existence of a third coping mode, that of avoidance-oriented coping, seen as comprising efforts to disengage from the stressful situation. Current theorizing and research endeavors in the study of coping (9, 13, 14) further focus on the interactive relationships among coping strategies and processes, more stable personality traits, and situational determinants, all of which coalesce to explain most of the variation in the nature, valence, and effectiveness of coping. Furthermore, the proliferation of coping research has also resulted in two additional important contributions. First, coping presently is almost universally regarded as a complex, hierarchical construct. At its most generalized level (i.e., macroanalytic), coping is viewed as reflecting style- or dispositional-like characteristics (e.g., engagement versus disengagement efforts). At the intermediate level, coping efforts operate as more discrete strategies or modalities and are typically assessed through unified classes of coping behaviors (e.g., problem solving, acceptance). Finally, at their most specific level (i.e., microanalytic), coping efforts comprise mostly situation-determined, frequently observable, behavioral activities that can be depicted as unique and measurable acts (e.g., “I turn to work to take my mind off things,” “I talk to someone about how I feel”). The second important contribution, stemming from recent research efforts to measure coping, is the proliferation of empirical, psychometrically sound coping measures. There are currently more than 20 measures of coping that span the range of 2 to almost 30 dimensions or (sub)scales of coping. (For reviews of these scales the reader is referred to 5, 11, 15.) Research on coping with chronic illness and disability (CID) has, likewise, made major strides in recent years. Empirical documentation on the role played by coping strategies in psychosocial adaptation to CID has been obtained from such groups as people diagnosed with cardiac conditions (e.g., 16, 17), cancer (e.g., 18, 19), spinal cord injury (e.g., 20, 21), rheumatoid arthritis (e.g., 22), diabetes (e.g., 23), traumatic head injury (e.g., 24), multiple sclerosis (e.g., 25), pain (e.g., 26), amputation (e.g., 27), and visual impairments (e.g., 28). Findings from these studies, and from related reviews of the literature on coping with CID (e.g., 29, 30) suggest the following: 1. A wide range of macroanalytic engagement and disengagement coping modes, as well as specific problem-solving and emotion-focused coping strategies, 2001 Elsevier Science All rights reserved. ©

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have been employed by people with CID to combat the stresses associated with their diagnoses, functional limitations, medical courses, prognostic indicators, related health problems, treatment modalities, longterm implications, environmental impact, and psychological distress. 2. During the medical course of specific chronic conditions and fluctuating physical impairments, different coping strategies are adopted to meet the various demands necessitated by the changing health, physical, psychological, social, spiritual, and environmental needs of the individual. 3. Coping efforts have been portrayed in the literature as occupying a variety of roles in psychosocial adaptation to CID. They have been studied as to their (a) direct contribution to adaptation (i.e., their direct link in determining, influencing, or potentiating psychosocial adaptation to CID); (b) mediating role in adaptation (i.e., their ability to act as mediators between the individual’s sociodemographic variables, disability-related factors, personality attributes, environmental conditions, and outcomes of psychosocial adaptation); and (c) role as outcome variables during the psychosocial process of adaptation (i.e., the changes observed in the type and valence of coping strategies as a result of medically and environmentally triggered life stressors). 4. Although there is a general tendency among coping researchers and clinicians to consider some coping strategies (e.g., problem-focused, positive reinterpretation) as inherently more adaptive or propitious to attaining successful psychosocial adaptation to CID, and other coping strategies (e.g., avoidance, wishful thinking) as more maladaptive or deleterious to attaining successful outcomes, the majority of coping strategies fail to be accounted for in such a simplistic dichotomy. For example, coping through denial has been associated with better adaptation to cancer and heart disease in the early stages following the condition onset, but its deployment has been linked to higher level of distress later on (e.g., 31–34). Similarly, data obtained on the relationships between coping strategies such as seeking religion, acceptance of the condition, and attribution of blame, and psychosocial adaptation to life-threatening diseases yielded mixed results (e.g., 35–37). Among the reasons for these contradictory findings are the often-nebulous criteria adopted for outcome measurement of psychosocial adaptation to CID. The latter typically involve a wide range of affective, cognitive, functional– behavioral, motivational, interpersonal, and vocational measures. These include measures of: (a) psychological or emo-

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tional distress (e.g., depression, anxiety); (b) well-being or life satisfaction; (c) perceived quality of life; (d) self-concept or self esteem; (e) acceptance of condition; (f) satisfaction with social and/or familial relationships; and (g) vocational indices (e.g., satisfaction with work, job stability). The following section highlights findings from the literature on psychosocial adaptation to epilepsy and the criteria used to measure adaptation among people with epilepsy.

PSYCHOSOCIAL ADAPTATION TO EPILEPSY Earlier reviews of research on psychosocial adaptation to disability and quality of life among individuals with epilepsy (38 – 42) have suggested that, surprisingly only scant information exists on the role played by nonpathological, psychological, and emotional factors during the adaptation process. Most available data appear to have focused on investigating psychopathological correlates of the disorder (39 – 41). Even research findings on nonpathological factors still emphasize the negative correlates of life with epilepsy, including poor quality of life and decreased psychosocial well-being (43, 44). Among the various interictal epileptic behavioral, emotional, and personality correlates (often seen also as psychosocial outcomes to the process of adaptation to epilepsy) are those of psychotic symptoms, aggressive behaviors, violence, suicide, sexual dysfunction, and a wide range of affective and cognitive disorders, such as depression, anxiety, and decreased self-esteem (39, 43, 45– 47). The reasons underlying these putative findings can be traced to factors such as: (a) side effects of anticonvulsant medication and other iatrogenic factors; (b) neurological (i.e., central nervous system) factors that include type and cause of seizures, frequency and level of severity of seizures, and age of onset and duration of condition; and (c) psychosocial factors manifested by degree of stress experienced, felt or perceived stigma and encountered social discrimination, perceived controllability of seizures, associated anxiety, and concerns about the condition and the future (41, 42, 45, 48, 49). As suggested above, the roots of psychosocial problems of adaptation to epilepsy can be conveniently traced to four main categories: (a) anxiety and concerns about the unpredictability and lack of controlla-

bility associated with the diagnosis of epilepsy, (b) perceived stigma and discrimination associated with the diagnostic label of epilepsy, (c) increased impact of epilepsy-specific life stressors, and (d) health and functional consequences linked to denial of condition. Despite recent medical advances that have rendered epileptic seizures mostly controllable (50), there still exists a “brutal degree of unpredictability” in their manipulation (41, p.1137). The essential nature of epilepsy is still equated with a disorder that is episodic, unpredictable, and for many individuals still uncontrollable. Life stripped of the ability to predict future events and control one’s behavior raises levels of anxiety and fear. Specific fears may be associated with loss of employment, embarrassment in public, physical harm to oneself, emotional consequences, and even fear of death (51–55). In their model of adjustment to epilepsy, DeVellis and DeVellis (56) conceptualized perceived predictability and control of seizures as occupying a cardinal role in psychosocial functioning. Matthews and Barabas (57), in their study of 45 children with epilepsy, reported that perceived lack of control among these youngsters was related to higher risk of maladaptive behaviors in a number of life domains including interpersonal and academic ones. Epilepsy has often been regarded as one of the most stigmatizing medical impairments (51, 58 – 60). Its numerous discrediting attributes include these of criminal tendencies, sexual deviance, mental incompetence, and moral decadence (41, 45). Consequences of these discriminating perceptions typically result in (a) denial of common benefits (e.g., life and health insurance, driver’s license); (b) restrictions on ordinary life activities (e.g., exclusion from school, adoption of eugenic marriage laws); (c) limitations on life experiences that result in independence (e.g., employment discrimination, housing restrictions); and (d) internalized feelings of societal rejection and devaluation leading to feelings of social isolation and withdrawal, depression, frustration, hostility, dependency, shame, and guilt (41, 42, 45, 61, 62). Hermann and Whitman (63), in their study of 102 adults with epilepsy, found a statistically significant correlation between perceived stigma and depression. In an extension of the above study, Hermann et al. (64), reported that perceived stigma was also linked to increased levels of psychopathology, as measured by the total score of the General Health Questionnaire 30-item version (GHQ-30). Life stressors triggered by epilepsy include a wide range of negatively valenced events such as the need to follow rigid medical regimen, increased memory ©

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536 loss, inability to obtain a driver’s license, limitations imposed on various daily activities, frustration with medication’s inability to “cure” seizures and their pernicious side effects, cost of medication, difficulty in obtaining health and life insurance, fear of injury to oneself, overprotectiveness by family and friends, dependency on others, rejection by society, restrictions imposed on the use of alcohol, fear about one’s own children who may become seizure-prone, and fear about sexual activity (45, 51, 65– 67). Hermann et al. (64), in a study of 102 patients with epilepsy, reported a significant positive relationship between increased number of stressful life events during the past year and increased psychopathology as measured by the GHQ-30. Hermann and Whitman (63), in their previously mentioned study, also provided data indicating that increased number of stressful life events and decreased financial status were associated with increased levels of depression. Denial of the implications associated with epilepsy often triggers health and functional consequences that endanger the individual’s social relations, job retention, personal safety and that of others, and even life. Denial of the condition is manifested in both obtuse and subtle reactions. It is evidenced through engaging in such activities as: (a) not adhering to the prescribed medication regimen, (b) driving when seizures are not fully controlled, (c) drinking alcoholic beverages, and (d) insisting on performing hazardous job tasks that include climbing ladders, working at unprotected heights, and working in close proximity to moving machinery, hot ovens, etc. (68, 69). Denial of diagnosis of epilepsy was found to be related to increased attrition rates among children and adolescents with epilepsy who attended a community-based epilepsy program in India (70). Denial of problems among patients with epilepsy was also found to be one of the predictors of early mortality stemming from convulsive seizures (71).

COPING WITH EPILEPSY The next segment of this review focuses on those coping styles and strategies that are implicated in the literature as being associated with psychosocial adaptation among adults with epilepsy. A comprehensive on-line search of MedInfo and PsycLIT, the two primary literature databases on coping and adaptation to epilepsy, yielded a surprisingly small number of research articles on the relationships between the use of coping strategies and outcomes reflecting psychoso2001 Elsevier Science All rights reserved. ©

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cial adaptation to epilepsy. Although some preliminary data are also available on coping by parents, spouses, and caregivers of people with epilepsy (e.g., 54, 72), coping among children with epilepsy (e.g., 57, 93), and on the role played by defense mechanisms in the lives of people with epilepsy (e.g., 73), these topics are beyond the scope of the present review. This section focuses on investigations of coping among people with epilepsy. The corpus of these investigations may be conveniently grouped into two broad categories: namely, the study of higher (e.g., more global) levels of coping styles or dispositions, and the study of lower (e.g., more specific) levels of coping strategies. Despite inconsistencies in theoretical and measurement approaches undertaken in the investigations of these coping efforts, scrutiny of the selected studies suggests a reasonable line of categorical demarcation. The following discussion, accordingly, focuses first on broader coping styles outlined in the epilepsy literature (e.g., learned resourcefulness, self-efficacy) and, second, on more specific, mostly scale-defined, coping strategies.

General Styles for Coping with Epilepsy The literature on dispositional coping with epilepsy is scant. However, five macroanalytic coping styles have been reported to relate to psychosocial adaptation to epilepsy. These include learned resourcefulness, global problem solving (versus affective-focusing) style, self-efficacy, locus of control, and willingness to disclose existence of condition.

Learned Resourcefulness In an earlier study concerning the role played by learned helplessness (LH) and learned resourcefulness (LR) in coping with epilepsy, Rosenbaum and Palmon (74) reported that, in their sample of 50 outpatients diagnosed with epilepsy, participants who were highly resourceful (as measured by Rosenbaum’s SelfControl Schedule) were significantly less anxious and depressed and reported increased acceptance of their condition (as measured by the Acceptance of Disability scale), when compared with those who scored low on resourcefulness. These findings, however, held true only for respondents with low to medium (but not high) seizure frequency. Furthermore, respondents noted by their high LR, regardless of seizure frequency, also reported a strong belief in their own

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ability to control (as measured by the Health Locus of Control Scale) seizure activity and personal health. Global Problem Solving versus Affective Coping Snyder (66) sought to investigate the relationships among global problem solving (as measured by the author’s 15-item scale, purportedly indicating this coping orientation), global affective coping (as measured by the author’s 25-item scale, reflecting this coping orientation), and psychosocial adaptation to epilepsy. Adaptation in this study was investigated with two measures: level of anxiety and perceived subjective health. Results from a sample of 107 respondents with epilepsy indicated positive relationships between problem-oriented coping and higher perceptions of subjective health. Higher anxiety scores were positively associated with the use of affective-oriented coping and negatively associated with the use of problem-oriented coping. Self-Efficacy In an attempt to compare emotional adaptation among people with (n ⫽ 52) and without (n ⫽ 48) epilepsy, Tedman et al. (75) developed a scale to measure perceived self-efficacy that focused on respondents’ core beliefs, perception of adaptability, and knowledge of epilepsy and its ramifications. Perceived self-efficacy among respondents with epilepsy was positively correlated with measures of self-esteem and affect balance. Self-efficacy was also found to be negatively associated with measures of depression and anxiety. Finally, those with higher perceptions of selfefficacy also reported reduced perceptions of epilepsy impact and felt stigma.

depression. This relationship, however, was evident only during a preoperative period. Following anterior temporal lobectomy (ATL) the relationship between LOC and depression was no longer significant. Similar findings were obtained from a study by Arnston et al. (79), who reported a positive but weak association between external health LOC (as measured by an abbreviated and modified version of the multidimensional Health LOC Scale) and measures of depression, helplessness, and anxiety in a sample of 357 respondents to a national survey conducted by the Epilepsy Foundation of America—Self-Help Groups. A positive link between external LOC and depression was also reported by Hermann and Whitman (63) in their study of 102 patients with intractable epilepsy awaiting evaluation for brain surgery. In an extension of this study, Hermann and colleagues (64) also found a significant relationship between external LOC and overall psychiatric status as measured by the GHQ-30 in the same patient sample. Krakow et al. (80) reported that, in a sample of 40 German patients with epilepsy, the belief in control by powerful others (as measured by a German generalized LOC questionnaire) was associated mostly with coping modes the authors termed “ineffective” (e.g., wishful thinking), as well as with religiousness/search for meaning coping, and higher levels of depression. Chance LOC was related to an unfavorable social management, a measure the authors selected as an indicator of psychosocial adaptation. Kemp et al. (48), in their study of 94 British patients with epilepsy, found no relationship between a measure of external control (the authors’ own measure) and psychosocial outcome variables of (a) psychological well-being and (b) psychological distress, both measured by the Mental Health Inventory (MHI). Willingness to Disclose

Locus of Control Perceived locus of control (LOC) has traditionally been conceptualized as comprising two primary dispositions: internal LOC (the perception that outcomes are generally contingent on one’s efforts and behaviors), and external LOC (the perception that outcomes are determined mostly by chance, forces beyond one’s control, or powerful others) (76, 77). Only meager attention has been paid in the epilepsy literature to the relationships between type of LOC and psychosocial adaptation. Hermann and Wyler (78), in a study of 37 patients with intractable, temporal lobe-triggered seizures, found a positive correlation between external LOC (as measured by Rotter’s I-E LOC Scale) and

Although traditionally not regarded as a measure of coping, willingness to disclose as conceptualized and empirically approached in the study reported by Troster (81) appears to indicate a broad style of coping with epilepsy. Willingness to disclose was viewed as a generalized cognitive, decision-making approach to weighing the “social consequences under the particular circumstances in which the question of disclosure arises” (p. 151). To test the usefulness of this approach, 62 German outpatients with epilepsy were asked to report their willingness to disclose their condition in several social contexts (e.g., with intimate friends, during job interview, with strangers on a bus) and also the kind of social consequences (positive or negative) they ©

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538 anticipated following the disclosure. Although no specific measures of psychosocial outcomes were used in the study, findings did suggest that willingness to disclose (a) correlated negatively with anticipated negative social consequences, and (b) correlated positively with perceived severity of epilepsy. The latter finding, however, was revealed only within public, but not private, contact sites. The author concluded that no generalized coping strategy of condition concealment existed in the sample. Rather, deciding when and how to disclose condition was determined mostly by concrete concerns tied to specific contexts within which the person functions. The study provided no information on the relationships between these decision-making processes and the type of psychosocial outcomes. To summarize, the research findings reviewed in this section suggest that the broad coping styles of learned resourcefulness, global problem solving, and self-efficacy may be viewed as generally adaptive in nature, since they are all linked to better psychosocial outcomes, as manifested by lower levels of depression and anxiety, higher perceptions of subjective health, increased self-esteem, and decreased feelings of stigma and condition impact. In contrast, an external LOC orientation appears to be associated with poorer psychosocial outcomes. Conceptually, these findings could be interpreted as lending support to Bandura’s theory of self-efficacy and Seligman and Rosenbaum’s theory of learned helplessness and learned resourcefulness, respectively. In his theory of perceived selfefficacy, Bandura (82) argues that the individual’s assessment of his or her ability to perform specific tasks is a crucial factor in undertaking that task. The belief in one’s own level of competence, therefore, determines the chances of success (e.g., alleviation of a stressful situation) in that environment. In a similar vein, Seligman (83) and Rosenbaum (84) posit that, whereas an individual who develops a cognitive map of negative expectations fails to link personal responses with environmental outcomes (learned helplessness), a person who acquires a general cognitive and behavioral repertoire of successful coping with stressful events fares better in achieving successful outcomes (e.g., successful regulation of distressing feelings and cognitions).

Specific Strategies for Coping with Epilepsy In contrast to the broader, transsituational, macroanalytic coping styles, coping strategies are generally 2001 Elsevier Science All rights reserved. ©

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regarded as more situation-specific, microanalytic approaches to diffusing stressful events or minimizing their negative impact (5, 11). The classification of these strategies often follows an engagement-versus-disengagement dichotomy (e.g., 85, 86). Engagement-type strategies include those in which the individual seeks to actively manage conditions inherent in a stressful person– environment transaction (e.g., problem focusing, planning, information seeking, cognitive reappraisal). Disengagement-type strategies, in contrast, include those in which the person attempts to remove or disengage himself or herself from the person– environment interaction (e.g., denial, avoidance, distraction, wishful thinking). The following two sections focus on these two types of coping strategies as they relate to psychosocial adaptation among people with epilepsy. Engagement Strategies The findings on the relationships between four types of engagement strategies and psychosocial adaptation among people with epilepsy are briefly reviewed in the following paragraphs. Problem-focused coping. In three reported studies (48, 80, 87) problem-solving coping was linked to increased mental health. Problem-focused coping (as measured by the revised Ways of Coping Checklist) was found to be positively associated with better mental health (as measured by the MHI Index of the MHI), increased psychological well-being (as measured by the Psychological Well-Being subscale of the MHI), and decreased psychological distress (as measured by the Psychological Distress subscale of the MHI) among 94 British patients with epilepsy (48). In a German sample of 40 patients with epilepsy Krakow and colleagues (80, 87), using the same data set, reported that active, problem-focused coping (as measured by the Freiburg Questionnaire of Coping) was the most widely used coping strategy in their sample. Furthermore, participants regarded these strategies as the most helpful for psychosocial adaptation to their condition. Unexpectedly, however, the use of active, problem-focused coping was not related to level of reported depression. Finally, Oosterhuis, studying psychosocial adaptation to epilepsy among Dutch patients with epilepsy, reported negative correlation between active, goal-directed, problem-solving coping and two outcome measures of self-perceived seizure severity, as well as levels of “psychological complaints,” a measure obtained, but not computationally specified, from the Symptom Check-

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list (SCL). These findings were also upheld by multiple repression analyses, using both psychosocial outcome measures (perceived seizure severity and psychological complaints) as dependent variables. Cognitive restructuring. Cognitive restructuring (CR), as measured by the Ways of Coping Checklist (WCCL), reflects efforts on the part of the individual to uncover the positive aspects of the condition and to view the condition as an opportunity for further growth. It is, alternatively, labeled as positive reappraisal, positive reinterpretation, and positive reframing. Only one study was located that focused on the relationship between CR and psychosocial adaptation to epilepsy. Upton and Thompson (88) reported, in their British sample of 137 people with epilepsy, negative correlations between CR and levels of depression and anxiety (greater use of CR was predictive of lower levels of both depression and anxiety). Information seeking. Information seeking (IS), as conceptualized by the WCCL, describes as active, task-oriented strategy to seek medical information and advice. Upton and Thompson (88), in their previously reported study, found a statistically significant positive correlation between increased use of IS and higher level of anxiety (as measured by the Hospital Anxiety and Depression Scale), and also a weak negative relationship between the use of IS and social avoidance (as measured by the Social Avoidance and Distress Scale). Emotional expression. Emotional Expression (EE), as measured by the WCCL, is a coping strategy where the individual vents his or her emotions (e.g., anger) in the presence of others. In their study, Upton and Thompson (88) found no significant relationship between the use of EE and several indicators of psychosocial adaptation to epilepsy (i.e., self-esteem, depression, anxiety, and social avoidance). Disengagement Strategies The results of the relationships between seven types of disengagement strategies and psychosocial adaptation to epilepsy are outlined in the following paragraphs. Wishful thinking. In Upton and Thompson’s (88) previously reported study, wishful thinking (WT), typically viewed as a form of wish-fulfilling fantasy and an effort to reduce negative feelings by resorting to diversion or distraction of thoughts from the problem one faces, was positively associated with reported anxiety and depression. Furthermore, WT was also related to lower self-esteem and to poorer acceptance of epilepsy. Kemp et al. (48) concluded from their

multiple regression analysis results that WT coping, when entered as a third variable block, following demographic and neuroepilepsy variables, did not contribute independently to the variance in the psychosocial outcome variables of mental health, psychological well-being, and psychological distress. WT did, however, show a positive zero-order correlation with psychological distress and a negative zero-order correlation with the mental health composite index. WT was also associated with increased perceptions of symptom severity, frequency, and with enacted stigma. Finally, Krakow et al. (80), in their study, found WT to be used only minimally by their sample of persons with epilepsy. Scores on the WT subscale of the Freiburg Questionnaire of Coping with Illness, however, were positively correlated with participants’ reported depression. Avoidance. Avoidance (A) or escapism is regarded as a set of coping strategies that comprises people-, situation-, and task-avoidance responses (12). Use of avoidance coping was reported in a single study (48), where it was found to be negatively correlated with psychological well-being, as measured by the MHI. Avoidance was also positively linked to perceptions of symptom severity and frequency, as well as to perceptions of stigma and discrimination. Denial. Denial of epilepsy, as discussed earlier, poses a major problem in the lives of people with epilepsy. Yet only a single study was located that sought to investigate the nature of denial among persons with epilepsy and its relationship to psychosocial outcomes. Levine et al. (89), using the Levine Denial of Illness Scale (LDIS), a semistructural interview measure, reported on the psychometric properties of this scale in a sample of 100 medical patients, 19 of whom were diagnosed with epilepsy. In the absence of separate analyses for participants with epilepsy, the reported findings may not accurately reflect denial as experienced uniquely by those with epilepsy. The results, however, suggest the existence of two types of denial, termed Cognitive Disavowal (e.g., displacement of symptoms, minimization of diagnosis and prognosis, information avoidance) and Affective Disavowal (e.g., absence of anxiety, denial of depression, denial of fear of death, denial of anger). Although Cognitive Disavowal was not found to be related to any of the measures of psychological distress, Affective Disavowal was negatively correlated with the Anxiety and Depression subscales of the SCL-90, as well as with the General Severity Index (GSI) of the SCL-90. The cognitive Disavowal scale did, however, correlate positively with health care staff perceptions ©

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540 that the patients appeared to lack accurate understanding of their condition. Distraction. Coping through distraction (typically viewed as an active attempt to escape from stressful situations) was reported in a single study only (80). In that study, distraction was found to be unrelated to depression or to any of a number of sociodemographic (e.g., age) or medical (e.g., duration and frequency of epilepsy) variables investigated. Of interest was the authors’ finding that distraction was the second most frequently used mode of coping among the study’s participants. Palliative coping. Although traditionally not included as a homogeneous coping strategy in the coping literature, palliative coping (PC; a generalized strategy that combines reactions such as seeking diversion, smoking, drinking, relaxing, avoiding problematic situations, seeking social support, and using comforting thoughts) is measured by a specific subscale in the Dutch questionnaire, the Utrechtse Coping List (UCL). In a study of 60 Dutch patients with epilepsy, Oosterhuis (90) reported that PC contributed significantly to the variance observed in the outcome variable of psychological complaints, as assessed by an unspecified index obtained from the SCL-90. These findings, however, must be interpreted with caution since PC was not a unique coping strategy, but rather was a conglomerate of several coping modes. In addition, the psychosocial outcome measure of “psychological complaints” was not clearly defined or psychometrically specified. Self-blame. The association between self-blame (SB) and psychosocial adaptation to epilepsy was investigated by Upton and Thompson (88). SB was found to correlate positively with levels of both depression and anxiety, and was associated with lower level of selfesteem and acceptance of condition. No other studies were found that reported data on the relationship between SB and adaptation to epilepsy. Religiousness. Although not consistently viewed in the coping literature as a disengagement type of coping, religiousness, or seeking religion, is nevertheless often seen as disengaging oneself from direct and active problem management and instead seeking comfort in and resorting to praying for reversal of condition course or minimization of condition impact on one’s life. In their previously reported study, Krakow et al. (80) found religiousness coping, as measured by the Freiburg Questionnaire of Coping with Illness, to be associated with increased levels of depression in their sample of respondents. Religiousness, as expected, was also positively correlated with a global 2001 Elsevier Science All rights reserved. ©

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coping disposition, the belief that powerful others (as a form of external LOC) are in control of most healthrelated outcomes. Finally, it is important to outline briefly the role played by medical and neurological variables (e.g., frequency of seizures, duration of epilepsy) in predicting psychosocial adaptation to epilepsy. By and large, scant attention has been paid in the literature to the influence of medical variables on adaptation to epilepsy. Among coping studies that have attempted to investigate the contribution of medical variables to adaptation to seizure disorders, frequency of seizures and duration of epilepsy have been most commonly studied. Whereas frequency of seizures was found to be positively associated with measures of psychiatric symptomatology (e.g., anxiety, depression) in some studies (48, 74, 80), as well as with lower levels of active and problem-solving coping (80), it failed to demonstrate similar relationships in other studies (81, 88, 90). Similarly, findings related to the relationship between duration of epilepsy and psychosocial adaptation are inconsistent. Whereas duration of epilepsy was reported to be positively linked to depression in one study (80), it was found to be independent of measures of depression (78, 88, 92), willingness to disclose condition (81), anxiety (88, 92), and self-esteem (92) in other studies. Other medically related variables that were reported to be independent of measures of psychosocial adaptation to epilepsy include age of onset (78), left versus right temporal lobe seizure onset (78), and length of seizures (81). In most of the reported studies, coping strategies consistently explained more variance in psychosocial adaptation to the condition than that explained by medical and neurological variables.

Summary of Findings from Studies on Coping with Epilepsy The literature on coping with epilepsy is sparse and may be regarded as being in its infancy. The following tentative conclusions, however, can be offered: 1. Among the broader, more global coping styles, some preliminary support has been aggregated that associates personal resourcefulness, problem-solving mindedness, and self-efficacious approach with better psychosocial adaptation to epilepsy. The latter has been traditionally indicated by measures that reflect decreased levels of anxiety and depression, higher

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perceptions of subjective health, increased self-esteem, and reduced felt stigma. 2. Among the more specific coping strategies, persons with epilepsy who were reported to adopt the so-called engagement coping modes of planful problem-focused and cognitive restructuring demonstrated better psychosocial outcomes, including better mental health, increased psychological well-being, decreased psychological distress, and lower levels of reported depression and anxiety. 3. The use of specific coping strategies conceived as disengaging in nature, among people with epilepsy (i.e., wishful thinking, avoidance, and self-blame), was found to be generally associated with poorer psychosocial outcomes as reflected in higher levels of depression and anxiety, lower self-esteem, decreased psychological well-being, and heightened perceived stigma. 4. Denial, arguably one of the most frequently discussed clinical features among people with epilepsy, received almost no empirical attention in the reviewed literature. Results from a single transdisability sample of respondents (of which less than one-fifth were diagnosed with epilepsy) suggested that affective denial of the condition was linked to reduced levels of reported anxiety and depression, thus lending some support to the notion that, when successful, denial can act to alleviate psychological distress.

CLINICAL AND RESEARCH IMPLICATIONS The literature on coping with epilepsy strongly suggests that the engagement-type coping strategies of problem solving and cognitive restructuring (both depicting active, purposeful planning and dealing with stressful situations) were associated with better psychosocial adaptation. In contrast, disengagement-type strategies, such as wishful thinking and avoidance (both indicating cognitive and/or behavioral escapism), were found to be linked to poorer psychosocial outcomes. This finding suggests that treatment and rehabilitation efforts for people with epilepsy should focus on coping skills training that emphasizes acquisition of active, problem-solving-oriented, and goaldirected coping skills. Cognitive-behavioral skills training programs could be implemented that assist the individual with epilepsy in pursuing personal, social, and, when appropriate, vocational goals. Personal and social goals could focus on such areas as seizure management, stigma reduction, and perceived controllability over the impact of the disability. Also,

personal skills training could assist the person with epilepsy in reducing stresses and daily living problems triggered by the functional limitations and other restrictions associated with the condition (e.g., restrictions on driving, consumption of alcoholic beverages, and performance of job tasks). Second, if supportive findings on the role played by coping styles and strategies during the process of psychosocial adaptation to epilepsy do indeed pan out in future research efforts, clinicians may wish to consider incorporating coping instruments into their battery of assessment tools. Psychometrically sound and domain comprehensive measures such as the Ways of Coping Checklist (91), the COPE (85), and the Coping Strategies Inventory (86) can provide useful and clinically insightful data on how people with epilepsy approach various stressful life situations, and ultimately shed additional light on their psychosocial adaptation to their condition. Research on the relationship between coping strategies and adaptation to epilepsy is in its earlier phases. As such, these research efforts are marred by a number of conceptual and methodological limitations. Foremost among these are: (a) lack of demarcation among conceptually different coping models and coping categories that is further confounded by the use of a wide range of coping measures, many of which fail to meet acceptable psychometric standards and often provide only minimal information on their specific (sub)scales’ properties; (b) obtaining data from conceptually and methodologically divergent coping scales and from scales that span different languages (e.g., English, Dutch, German); (c) relying on static or cross-sectional, rather than process-oriented or longitudinal research designs, aimed to capture the essence of coping with epilepsy; (d) basing findings and conclusions on small (typically 20 to fewer than 100 respondents), unrepresentative, and periodically biased study samples (e.g., relying on data obtained from convenience samples, sampling inpatient-only respondents); (e) failing to control for potentially confounding variables (e.g., level of functioning, degree of brain involvement, type of seizures, frequency and duration of seizure activity) that may affect psychosocial functioning; and (f) adopting inconsistent, and often difficult to compare, psychosocial outcome measures that range from indicators of emotional distress (e.g., depression, anxiety), to indicators of broad cognitive perceptions (e.g., self-concept, life satisfaction), to specific measures of condition acceptance. To address these concerns, researchers should consider the following: ©

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542 1. Delineate and justify the theoretical model(s) of coping adopted in their study, along with their derived coping categories (subscales) and specific strategies, to facilitate comparison among studies and gain a better understanding of the rationale underlying their empirical approach. Furthermore, careful attention should be given to describing the coping measures used, their psychometric properties, and their previous use as predictors in studies focusing on psychosocial adaptation to epilepsy and other disabling conditions. Additionally, the epilepsy literature could also indirectly benefit from efforts to cross-validate, and compare, findings obtained from the most frequently used coping scales that focus on psychosocial outcomes among people with related neurological and brain disorders. These research efforts are likely to generate findings that might clarify the relationships among the various coping measures and ultimately lead to a more precise comparison of the various coping models and to further refinement of their structural elements. 2. Since coping is perceived to be a nonstatic, or not merely one-time-only, effort on the part of the individual, but rather a complex, dynamic, and most certainly evolving process, research should focus on longitudinal designs to better capture changes in coping over time. Longitudinal research could also help to better appreciate the use of coping efforts within changing contextual (e.g., social, vocational, environmental) life domains. 3. Efforts should be made to study larger, representative, and geographically (transcontinental) balanced samples of respondents. Moreover, perspectives on coping and psychosocial outcomes should also be obtained from family members, caregivers (when necessitated by condition), and other external sources including, when available, employers, rehabilitation and medical personnel, and others acquainted with the individual’s daily living activities. 4. Outcome measures of psychosocial adaptation to epilepsy should undergo careful scrutiny, followed by concerted efforts to achieve measure standardization, to allow for meaningful comparisons among measures. Efforts should be directed at securing psychometrically sound, clinically useful, and functionally oriented measures of affective, cognitive, and behavioral outcomes, with particular emphasis on measures of epilepsy-associated psychosocial adaptation and indices of quality of life. In summary, the literature on psychosocial adaptation to and coping with epilepsy indicates the follow2001 Elsevier Science All rights reserved. ©

Livneh et al.

ing: (a) Most available data on psychosocial adaptation focuses on the psychopathological correlates of the condition rather than on the more adaptive, salutary efforts to combat its impact. (b) The reasons for maladaptive psychosocial adaptation to epilepsy have typically been traced to its omnipresent anxiety, perceived stigma and discrimination, increased level of condition-specific life stressors, and also unwitting use of denial. (c) Coping styles and strategies that have been empirically found to be associated with successful psychosocial adaptation to epilepsy include learned resourcefulness, self-efficacy, planful problem solving, and cognitive restructuring. (d) Coping strategies that have been linked to poor psychosocial adaptation to the condition include wishful thinking, avoidance, and self-blame. The authors recommend that future researchers of coping and psychosocial adaptation to epilepsy carefully delineate the coping model(s) that underlies their approach, describe the psychometric properties of the adopted coping measures, implement a longitudinal research design, secure data from a large and representative sample of respondents, and, when feasible, include perspectives on coping from proxy sources.

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