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    21 Semana 4. Ockwre Adjustment to Chronic Illness: Theory and Research Ow Annette L, Stanton Charlotte A. Collins Lisa A. Sworowski University of Kansas ‘There are only two health outcomes that are of importance. First, there is life expectancy. Second, there is function or quality of life during the years that people are alive M.. people confront chronic disease, if notin them- selves then in those they love. Indeed, more than 50% of deaths in the United States are attributable to cardiovascular disease and malignant neoplasms alone. In addition to their interest in decreasing mortality, health psychologists are ded- icated t0 aiding those who live with chronic disease maintain fulfilling lives. Health psychologists and others have devoted intense energy to identifying psychosocial and behavioral contributors to and consequences of chronic disease. This chapter provides an analysis of current knowledge regarding, psychological adjustment to chronic conditions. ‘Researchers have conducted hundreds of empirical studies to enhance understanding of adaptation to chronic illness. ‘The present literature review focused on pertinent studies of adults with cancer, cardiovascular disease, diabetes, rheu- matic diseases (particularly rheumatoid arthritis), and ac- quired immune deficiency syndrome (AIDS), which are conditions that comprise significant causes of mortality and morbidity and have received substantial empirical attention by researchers in health psychology and related fields. The aim is not to review this voluminous literature in detail Rather, the focus is on crosscutting issues in the conceptual ization of adjustment to these conditions, as well as extant theories and empirical findings regarding determinants of ad- —Kaplan (1990, p 1218) justment to chronic illness. Further, the discussion concen- trates on individual adult adjustment, and the reader is re- ferred to relevant literatures on adjustment to chronic disease in children (e.g., Roberts, 1995), intimate partners (e-., Revenson, 1994), and families (e,g., Kerns, 1995). (CONCEPTUALIZING ADJUSTMENT. TO CHRONIC DISEASE Sometimes when I wake up in the moming, I forget for a moment that I have cancer. Then it hits me like a ton of bricks and I think, “Will live to see my ltl girl graduate {rom college?” Who wouldn't have these fears? ‘The doctor brought the psychologist with him when T got ry diagnosis. He thought would fall apart at my third di- agnosis of cancer. I figure I'll get rid of it and go on, just Tike I've done the last two times. ‘So much positive has come from my experience with ean- cer. But I've also never been so scared or angry or sad ia my life Thave cancer but it doesn't have me. 88 NTON, COLLINS. SVOROWSKI ‘These reflections from individuals with cancer! represent a sampling of the array of reactions that accompany adiagnosis, of chronic disease, These individuals viewed themselves as, adjusting well to their disease. What constitutes positive ad. justment to chronic illness? Researchers have advanced var fous conceptualizations of adaptive functioning or health- related quality of life (QOL). Although many researchers ex- plicitly outline their framework for conceptualizing positive functioning, others" definitions are implicit, revealed by their choice of outcome measures in their studies of adjustment to ironic disease. The literature reveals at least five conceptu' alizations of positive adjustment: successful performance of] various adaptive tasks that accompany chronie disease, ab-| sence of psychological disorder, relatively low experience of| negative affect and/or high experience of positive affect, be- havioral/functional status, and appraisals of satisfaction oF well-being in various life domains. ‘Some theorists have defined adaptive tasks in chronic ill- ness, the mastery of which signals successful adjustment. For ‘example, Moos and Schaefer (1984) outlined the illness-re- lated tasks of managing pain and other symptoms, dealing with the hospital environment and treatment, and preserving ade quate relationships with medical personnel. More general tasks involve sustaining a “reasonable emotional balance” (p. 10), sound self-image, and relationships with close others, while preparing for an uncertain future. Taylor (1983), in her theory Of cognitive adaptation to threatening events, provided evi- dence from her study of breast cancer patients that successful adjustment requires adequate resolution of a search for mean- ing, the ability to retain mastery over one’s life, and enhance- ‘ment of self esteem. N. M. Clark et al, (1991) suggested that successful self-management of chronic disease requires suffi- cient knowledge about the disease and its treatment to make in formed decisions about health care, the performance of activities to manage the disease, and the application of skills to preserve adequate psychosocial functioning. Relatedly, many researchers focus on the individual’s experience of disease. ‘and treatment-related symptoms as indicative of adjustment. For example, the experience of greater fatigue, pain, or nausea compared with others undergoing similar treatments would re- flect less positive adjustment Researchers also have been interested in documenting the. prevalence of psychological disorders (c.g., Cordova et al., 1995; Derogatisetal., 1983; Rosenberger etal., 1993), partic- ularly adjustment disorders, depression, and anxiety disor- ders in individuals with chronic illness. In these conceptualizations, the relative absence ofsymptomsis taken ‘as an indicator of good adjustment. Italso should be noted that assessment of some relevant symptoms of psychological dis order is complicated by their overlap with symptoms of the chronic disease or its treatment (c.g. D. A. Clark, Cook, & Snow, 1998). For example, fatigue is both a symptom of de- pression and a common side effect of treatments for cancer; several other somatic symptoms of psychological disorder also are concomitants of chronic disease. “All quotes from individuals with eancer inthe chapter are from the first authow's research program, The literature also reveals a focus on affective experience as central toadjustment. Maintenance of relatively low levels ‘of negative affect and, in some studies, high levels of postive affect defines optimal adjustment in these studies. Both gen ral (cg, state anxiety, global distress) and disease-specific (eg., fear of cancer recurrence) measures are used. Re- viewing the literature on coping with rheumatoid arthritis, Zautra and Manne (1992) found that most studies relied on the absence of negative affect to indicate adequate adjust- ‘ment. This finding is consistent with the adjustment literature across several chronic diseases, Functional status and role-related behaviors also can indi cate adjustment. Return to work has been used as an adjust- rent index in many studies of those undergoing cardiac events, for example. Other examples of functional status in clude mobility, completion of physical rehabilitation, and ability to adhere to medical treatment regimens. Many researchers view the individual's appraisals of satis faction in various life domains as the crux of positive adjust- ment. Some are interested in overall appraisals of life satisfaction, whereas others focus on satisfaction in specific domains. Both general and disease-specific conceptualizations are evident. Often examined ate satisfaction or well-being in physical, functional, emotional, and social domains (c.g. Lutgendorf, Antoni, Schneiderman, Ironson, & Fletcher, 1995; Nayfield, Ganz, Moinpour, Celta, & Hailey, 1992), Several points emerge from the examination of the array of conceptualizations of adjustment to chronic illness. First, ad- justment to chronic illness is multidimensional, including, both intra- and interpersonal dimensions. Within these realms, intraindividual adjustment comprises cognitive (c.g. intrusive thoughts, self-evaluations), emotional (e.g.,depres- sion, anxiety), behavioral (e.g. return to work), and physical (e-g., symptom reports) functioning. Interpersonal adjust- ment often is relevant with regard to both personal relation- ships (e-2., family, friends) and relationships with health care providers. Further the dimensions are interelated. For exam- ple, negative emotional reactions (eg. anxiety) can contrib- lute to functional status (e.g., poor glycemic control) in individuals with diabetes (Lustman, 1988) Second, consensus exists regarding the centrality of indi- viduals” appraisal oftheiradjustment. Although other sources of information (eg. physician report, work functioning) are valuable, they cannot substitute for the individual’s own per- ception of QOL. A complicating factor for researchers inthis, area is the potential for response shift in individuals’ QOL perceptions (e.g., Sprangers, 1996). That is, patients’ inter~ nalized standards of measurement for QOL may change as they undergo treatment or comipare themselves to others who are similarly diagnosed. For example, rather than gauging QOL against premorbid functioning, individuals may shift their standard, concluding, “I’m doing well for someone go- ing through chemotherapy, especially compared to that man in clinic yesterday.” Third, although psychological and physical dysfunctions are central adaptive outcomes, i is important to note that posi- tive adjustment is not simply the absence of pathology. Posi- tive and negative affect, often used as indicators of adjustment, to chronic disease, represent two fairly independent dimen- sions (eg, Diener & Larsen, 1993). Thus, using only depres- sive symptoms (0 indicate QOL will yield only a partial picture of adjustment. A disease that robs life of some of its joys will not necessarily foster intensely negative emotions. In addition to experiencing positive affect, finding positive ‘meaning in the disease experience or attaining personal or spiritual growth also comprise important adaptive outcomes. Further, contributors to positive functioning may not beiden- tical to determinants of negative experience. Fourth, itis important to consider not only the valences of adjustment dimensions, but aso their duration and inter- ference with one’s functioning and goal pursuits. Indi uals’ acute feelings of anxiety and loss on learning that they havea chronic disease may not compromise adjustment, for example, unless these feelings interfere markedly with the ability to make important treatment decisions or they persist Tong after diagnosis. Clearly, adjustment to chronic disease is a complex phe- nomenon. It is recommended that researchers carefully con- sider their assumptions with regard to what constitutes positive adjustment, tailor thei assessments tothe theoretical question of interest, recognize that any particular assessment is likely to provide only a snapshot of circumscribed dimensions of functioning, and limit their conclusions regarding adjust ‘ment accordingly. Only through accrual of research tapping ‘multiple dimensions of adjustment can a comprehensive por- twait of adaptation to chronic disease be achieved. EMPIRICAL STUDIES OF ADJUSTMENT How do people with chronic disease fare with regard to psy- chological adjustment? Both in the psychological and med- ical literatures, a plethora of studies and reviews address this question. Indeed, Wood-Dauphince (1996), citing a MEDLINE search of surgical studies from 1989 to 1995, found that abstracts containing the words “quality of life and reporting standardized measures had increased from 27.4% in 1989 to 1990 to 48.3% in 1993 to 1995. Here, the discussion relies on empirical and meta-analytic reviews of studies addressing adjustment for the five chronic diseases targeted in this chapter, as well as single studies that de- seribe adjustment across patients with different conditions. van't Spijker, Trijsburg, and Duivenvoorden (1997) conducted,a meta-analytic review of 58 studies performed from 1980 to 1994 of psychological sequelae of cancer di- agnosis. Focusing on studies that included validated instru- ments, the authors found that from 0% to 46% of fiatients qualified for depressive disorder and from.9% to 49% qual- ified for anxiety disorder across the various studies. Compared to published reference norms for the general population, cancer patients were significantly more de- pressed (although the effect size was not significant for samples in studies published after 1987), but not signifi cantly more anxious or globally distressed. People with cancer were significantly less distressed, depressed, and anxious than were reference psychiatric patients, and they were less anxious than other medical patient groups, ADJUSTMENT TO CHRONIC ILLNE 389 ‘Several other reviewers ofthe adjustment literature also con- clude that those with chronic illness in general maintain ade- quate psychological functioning, although a significant ‘minority of patients may be at risk for persistent decrement in function in specific domains. For example, Katz, Rodin, and Devins (1995) reviewed studies of self-esteem in cancer pa- tients. No differences emerged between cancer patients and controls on global self-esteem, but body esteem was impaited in cancer patients who had disfiguring surgery (e.g., head and neck cancer). Reviewing the research on adjustment to coro- nary events, Ell and Dunkel-Schetter (1994) suggested that the majority of myocardial infarction patients evidence no long-term psychological impairment, although approximately fone third may demonstrate long-term impairment in overall psychosocial functioning and quality of life, and a minority ex- perience persistent depressive symptoms. Cox and Gonder: Frederick (1992), in their review of behavioral diabetes re- search, drew similar conclusions, They suggested that both children and adults diagnosed with diabetes report psychologi: cal disturbance Following diagnosis, but that adjustment returns to premorbid levels after approximately a year. However, they also reported studies revealing higher rates of psychological disorder (particularly depression and anxiety) in diabetic pa- tients than in the general population. In her review, DeVellis, (1995) found that depressive symptoms appear more prevalent in those with theumatic disease than in people with no chronic illness, although most individuals with sheumatic conditions do not report significant depressive symptoms. Reviewing studies ‘on the psychological impact of HIV/AIDS, Chesney and Folkman (1994) reported an apparent decrease in documented adverse psychological responses to HIV/AIDS over the time the virus has been studied, perhaps owing to advances in medi: cal treatment, counseling interventions, and public awareness. However, they found that disease progression has an important impact on psychological response, with asymptomatic individ: uals evidencing no clear elevation in anxiety and depressive symptoms, and symptomatic or AIDS-diagnosed individuals evidencing more pronounced distress. Furthermore, women with HIV may experience more depressive symptoms than men with HIV (Iekovies et al., 1999). Several studies have examined individuals’ adjustment across multiple chronic conditions. For example, Cassileth et al. (1984) examined 758 patients with arthritis, diabetes, can- cer, renal disease, dermatologic disorders, or depression versus the general public on the Mental Health Index. Psychological status was comparable across patients with different physical diseases and between patients and the comparison group. Pa- tients with chronic disease had more favorable psychological status than did depressed outpatients. Stewart etal. (1989) as: sessed 9,385 adults at physician office visits in three U.S. cities. Fifty-four percent had at least one of nine chronic conditions (ie,, hypertension, myocardial infarction, congestive heart fail ure, angina, arthritis, chronic lung problems, back problems, gastrointestinal complaints, diabetes). For eight of nine condi- tions, patients demonstrated fower functioning in physical, so- cial, and role-related domains, as well as mental health, health perceptions, and bodily pain, compared with those with no chronic disease. However, mental health was the domain least STANTON, COLLINS. SWOROWSK! affected by chronic condition, and the majority of variance in functioning and well-being was not explained by the presence of these chronic conditions Two broad conclusions extend from the descriptive litera- ture on adjustment to chronic illness. Fitst, most individuals appcar to adjust well to chronic illness, often resulting in psy- chological adjustment indicators comparable to or slightly below general population norms and more postive than indi- viduals who carry psychological diagnoses. Given that chronic illness presents numerous potential stressors, how an we account for this apparent positive psychological adap- tation? Several explanations are possible. Perhaps most indi viduals are able to muster sufficient internal and external resources in the face of chronic illness to maintain high QOL. ‘These contributors to adjustment are discussed in a subse- quent section. Another compatible possibility is that chronic diseases carry the potential for positive as well as negative ‘consequences and that people's ability to extract positive meanings from their disease experience balances any nega tive consequences. For example, Folkman, Moskowitz, Ozer, and Park (1997), in a study of HIV+ and HIV~ caregiving partners of men with AIDS, found tha although study partici- pants reported high levels of depressive symptoms, they also evinced positive morale and postive states of mind compara- bleto general population norms, and they reported experienc- ing positive meaningful events. A third possibilty is that, as ‘mentioned previously, individuals shift their comparison standards as they adapt to disease, so that they evaluate their own adjustment vis vis their status as a person with arthritis rather than asa healthy person, and they compare themselves toothers with arthritis rather than healthy others. Thus, owing to pervasive human tendencies toward positive self-evalua- tion (eg, Taylor & Browa, 1988) and toward comparing themselves favorably to others who are under similar threats (¢a., Stanton, Danoff-Burg, Cameron, Snider, & Kirk, 1999; ‘Taylor & Lobel, 1989), they are likely to evaluate themselves as doing very well for “an arthritis patient.” Another potential ‘explanation forthe apparently positive adjustment to chronic illness is that, rather than potentiating global maladjustment, chronic disease carries more circumscribed impact for most people. For example, Andersen (e.g..B. L. Andersen, B. An- derson, & deProsse, 19894, 1989h; BL. Andersen, Woods, & Copeland, 1997), in her studies of women with cancer, ob- served that experience with cancer is more likely to produce “islands” of life disruption in specific realms and at specific points in the ditease trajectory than to confer substantial risk for global dysfunction. If only global adjustment is assessed, researchers may miss meaningful points of impact of thes ease on psychosocial function, ‘A second conclusion is that considerable variability is ap- Parent in psychological adjustment, both across studies and across individuals within single studies. Across-study var ability is pot surprising, given that researchers have used a wide range of measures with samples that vary considerably in demographic attributes and points in the disease trajectory. Moreover, individual variability in reaction to chronic illaess certainly isto be expected, given that any particular disease epresents multiple stressors (e.g, pain, threatto life, ambigt- ity regarding the future, appearance and functional changes, interpersonal challenges, financial strain), each of which may or may notbe pertinent toa specific individual. Such stressors will carry differential relevance, depending on such factors as the individual's goal structure, psychological and contextual resources, and specific coping strategies. For example, indi viduals whose experience with serious disease saps already scarce environmental and personal resources may be at sub- stantial risk for pronounced life disruption and distress. The next section presents a theoretical and empirical analysis of such factors that may support or hinder individuals as they face chronic illness and thus render them differentially vul- nerable to adjustment difficulties. THEORETICAL PERSPECTIVI ON CONTRIBUTORS TO ADJUSTMENT. TO CHRONIC ILLNESS Many theories of adjustment to chronic illness derive from ‘more general conceptual frameworks regarding adjustment to stressful or traumatic experiences. One of the most prominent among these general theories is that of Lazarus and col- leagues (e-g.,Lazarus & Folkman, 1984). According to Laza- rus, central determinants of adaptive outcomes include personal resources, attributes of the situation, cognitive ap- praisals, and coping strategies. Although Lazarus and Folkman (1984) discussed preexisting resources and situa- tional attributes, they were more interested in processes initi- ated by the individual that unfold over the course of the stressful encounter. These include individuals’ cognitive ap- praisals of the potential for harm (ic., threat appraisal) and benefit (ie., challenge appraisals) arising from the encounter {ic.,primary appraisals), as well as appraisals of their ability, tocontrol or manage the situation’s demands (i.e., secondary appraisal). The process of appraisal catalyzes the initiation of coping strategies, which are “cognitive and behavioral efforts, to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" ip. 141). According to Lazarus and Folkman (1984), these cognitive appraisals and coping strategies engaged in re- sponse to a stressor substantially determine adaptive out- comes in emotional, social, and somatic realms. Similarly, ‘Moos and colleagues (e.g., Moos & Schaefer, 1993) included in their conceptual model of stress and coping the influences. of the environmental system (c.g, life stressors, social re- sources), the personal system (e.., demographic and per- sonal attributes) life crises and transitions (i.c., event-related. factors), and cognitive appraisals and coping processes on each other and on health and well-being. Specific theories on adjustment to chronic illness expand ‘on such general conceptual frames. An example is the model of Maes, Leventhal, and de Ridder (1996). They expanded on the Lazarus and Folkman (1984) theory by emphasizing the potentially important roles of contextual factors (e.g, other life events, demographic attributes, cultural and social envi- ronment), characteristics of the specific disease situation (e.g.. asthma in general versus a specific asthmatic attack), and associated disease representations (e.g, appraisals of the 21 identity, controllability, duration, causes, and consequences, of the disease and symptoms; Leventhal & Nerenz, 1983) in determining coping and adaptation. As have other theorists, Maes et al. also focused on the in- fluence of individuals’ life goals on disease representations ‘and coping processes. The more individuals’ central goals in life are threatened by the disease, the more stressful the situa- tion, and the more their appraisals, coping processes, and in- ternal and external resources are challenged. Perceived goal blockage is likely to engender distress and an attempt to cope, In his cognitive-motivational-relational theory of emotion, Lazarus (19912) revised the conceptualization of primary ap- praisal to include dimensions of goal relevance, goal congru- ence, and type of ego involvement. As one woman with advanced cancer stated, “Every time there's abig shift in what, Lean do, like when [couldn't drive anymore, I get really upset, for awhile. I usually ty to write out my anger and sadness, ‘Then Leventually startto focus on what Ican still doand who f still am, and I'm okay until the next slide and plateau.” Thus, coping can be conceived asa goal-directed process. As Laza rus stated (1991) ‘The connection between coping and intentions or goals has not been of interest to those working on the coping process. Yet how the person copes depends notonly on the coping possibilities and how they are appraised butalso on what a person wants to accomplish in the encounter. Moreover, new agendas arise from the ongoing flow of ‘events in the adaptational encounter. More than one goalis| apt tobe involved in each encounter, and these are apt to ‘change in primacy and salience. (p. 115) Coping processes can be understood as lower order goals (€.. express emotions about having cancer) that serve as a path to achieving higher order goals (.g., maintain emotional balance, live a fulfilling life) (Lazarus, 1991b). Also relevant with regard to the importance of goals in coping and adaptation isthe self-regulation theory of Carver and Scheier (e.g., 1981, 1990, 1998), which they have applied to coping with illness (Scheier & Bridges, 1995). In their view, “illness represents one general and significant class of events that can interfere with the pursuit of life's activities and goals, both those that are health related and those that are not. {Iliness] can interfere, toa lesser or greater extent, with the general set of plans and ectivities that give a person’s lifeits form and meaning” (Scheier & Bridges, 1995, pp. 261-262) To the extent that an individual expects to continue successful goal pursuit in the face of having a chronic disease, the init tion of approach-oriented coping strategies are likely. How- ever, if a person expects unremitting goal blockage, then disengagement may ensue. For example, assume that m: taining close family tes is an important goal for Dionne, who has AIDS. If Dionne expects that goal attainment is possible, she is likely to seek support actively from family members, in the best case resulting inthe receipt of such aid and consequent feelings of security and caring. However, if she believes that her family sees AIDS as a shameful condition, Dionne may avoid interactions with family or she may not disclose er sta T TO CHRONIC ILLNESS 301 tus to them, leaving her feeling isolated and depressed. Of course, another possibilty is that Dionne may shift her goals, such that she focuses more on maintaining close relationships in general than on family ties specifically. This example llus- trates how goals and goal-elated appraisals may determine the nature ofthe coping process and influence adaptation (see also Affleck etal, 1998) Both general theories of human functioning and those spe- cific tocoping withstessful experiences and chronic disease particular cen serve to guide researchers in their attempt to un- derstand determinants of adjustment to chronic illness. Theo retically grounded approaches, such as those that use the Lazarus and Folkman framework (see,¢.g,Smith & Wallson 1992, on rheumatoid arthritis; Stanton & Snider, 1993, on breast cancer; Pakenham, Dadds, & Terry, 1994, on AIDS), will yield more systematic and substantial advances than will research thatis solely empirically driven justas they will allow researchers notoreinvent the wheel in devising “new models ‘where established theory alneady exists. For example, attempts to identity contributors to depression in chronic disease may take asa starting point general theories regarding determinants of depression, as well as extant stress and coping theories. The literature on adjustment to chronic illness would benefit from careful delineation of the central conceptual points at which general and disease-specific theories diverge in ther uit for specifying contributors to positive adaptation, meaningful dif ferences among chronic diseases with egard totheirimpacton adjustment, and how competing theories fare with regard to their differential and combined utility in specifying the most significant influences on adaptation to chronic iliness. What follows isan analysis ofthe state ofthe empirical literature on determinants of adjustment. The broad conceptual categories in stress and coping theories (c.g. Lazarus & Folkman, 1984; Maeset al, 1996) are used as an organizing framework fr this discussion, EMPIRICAL RESEARCH ON CONTRIBUTORS TO ADJUSTMENT TO CHRONIC ILLNESS: This section aims to provide a sketch of factors that help and hhinder individuals s they confront chronic illness. A working model is depicted in Fig. 21.1 (see also Maes etal, 1996; Tay: lor & Aspinwall, 1996). It should be noted that, to increase readability, not all potential causal paths are displayed, and recursive relations are likely. The contextual factors of the disease itself and the environment are addressed first, fol- lowed by consideration of the personal context, including de- mographic and personality. attributes. Cognitive appraisal aad coping processes then receive attention. The Disease- and Treatment-Related Context Losing my hair, that was the worst part. The nausea wasn't ‘much fun either. They were constant reminders that I did: n’thave control over my body. Chronic diseases vary along numerous conceptual dimen: sions, including conwollability, predictability, and severity FIG. 21.1, Model of ifluences on adjustment to chron nes. (e.g, lethality, life disruption). Disease- and treatment-spe- cific variables can be mapped at least partially onto these con. cceptual dimensions. For example, disease course (e.g., pro- agressive or remitting), prognosis, lifestyle change required, side effect-related toxicity and life disruption, and degree of associated pain and disability all vary in controllability, pre- dictability, and severity across different chronic diseases. en within disease category, it would bea mistake toassume homogeneity. For example, different cancers carry dramati- cally different prognoses. Adding further to across- and within-disease variability is the Fact that, although the disease process itself accounts for much variance in these dimen- sions, several also are substantially determined by individual factors. What is one person's significant pain may be another person's annoyance. Chemotherapy-induced hair loss may prompt "Hair by Chemo” t-shirt purchase for one individual ‘and painful social isolation for another. Thus, although dis- ‘ease- and treatment. related factors often are considered exog- ‘enous variables in models of adjustment, their existence and impact actually may be influenced significantly by individu- als’ external and internal resources. Further, individual char- acteristics and behaviors may interact with disease-related factors to influence adaptive outcomes. Problem-fotused coping may be effective only for controllable aspects of a dis ease, for example, In light of this complexity, it is a general observation that, when disease- and treatment-specific factors (e.g. prognosis, treatment toxicity, pain) are demonstrated to be related to adaptive outcomes, they often reflect relations of low control lability, low predictability, and high severity with poorer ad: justment, Note that many studies do not reveal significant relations of disease-related Factors with adjustment. For ex: ample, disease stage is related inconsistently across stadies to esol Come Becta ramen | Die al Copane Cag Sec Aa Teme) {>| Spits | — Cones Environmental Lo Physical Health ee spss Ene adjustment to cancer (van't Spijker et al., 1997). Such inconsistent relations between disease-related factors and ad- justment may result from the use of small samples and thus in- sufficient statistical power to detect relations, or from restricted ranges on disease-specific factors, such as low fre quency of advanced cancers in a sample. Inconsistent rela tions also may reflect variability in study participants’ experience of or meanings attributed to disease stage. Large- scale and meta-analytic e.g., Moyer, 1997) studies are neces- sary to examine the influences of disease- and treatment-re, Ited factors on psychosocial outcomes. ‘Complexity in the determinants and impact of disease-re- lated factors carries several implications for research. First, studies comparing outcomes across diseases will be useful to the extent that they can disentangle mechanisms for obtained effects. For example, the finding that rheumatoid arthritis and systemic blood cancer patients reported more negative affect, less positive affect, and less acceptance oftheir iliness than pa- tients with hypertension or diabetes (Felton & Revenson, 1984; Felton, Revenson, & Hinrichsen, 1984) may reflect differences in perceived controllability or severity of consequences among those diseases. Second, many researchers treat disease-related variables as covariates in analyses. Although this is a reason- able approach, some investigators do not report the magnitude of the relations between the covariates and outcomes, with the result that nothing is learned about the potential impact of dis- ease variables. Investigators also often do not report first test. ing for interactions of disease-related variables with other predictors before including the variables as covariates. Not only is prior testing of such interactions a statistical requice- ment of covariance analysis, but it also may yield important findings. For example, disease trajectory may interact with coping processes, such that problem-focused coping may be 2 more effective during diagnosis and weatment planning than after treatment termination. Finally, although researchers in adjustment to chronic dis- cease typically have included disease characteristics as predic: tors of adaptive outcomes, it is clear that these factors also can be conceptualized usefully as dependent variables. For exam- ple, identification of factors that contribute to the likelihood of experiencing treatment-related side effects (e.g., the find- ing that high anxiety and treatment context predict the devel- ‘opment of anticipatory nausea during chemotherapy; Redd, 1990) has important applied implications. ‘The Environmental and Interpersonal Context 1 come to this support group because it’s the only place that I don’t have to put on my “strong” face. People here know what it's like to have a really bad day with cancer. My husband lost his job and had to take a new one in {an- other city]. I can’t afford to lose my insurance because of theeancer, so Tean'tquit my job, We have tolive apart. He was my mainstay during chemotherapy; Idon’tknow how Pll do without him. Apperson lives with chronic disease within an environmental, cultural, and interpersonal context. Such contextual factors hhave received relatively litle empirical attention, with the ex- ception of social support, Even social support typically has been examined from the perspective of the individual (Felton & Shinn, 1992). Although the individual’s perspective may be centrally important, examination of the interpersonal con- text also may yield rich data on adjustment processes. Given their relative emphases in the literature, the focus is on social support and the intimate interpersonal context, although the larger enviconmental and cultural contexts are mentioned and exemplary references are provided. The Environmental and Cultural Context As poignantly illustrated in the quotation from the cancer survi- vor experiencing job lock, the environmental context (c.g. concurrent life events, chronic strains) may influence adjust- ment to chronic disease. For example, Evers, Kraaimaat, Geenen, and Bijlsma (1997) found that having more stressful lifeevents was associated with higher anxiety shortly after di- agnosis ingheumatoid arthritis patients but not with distress a year later. Lepore and Evans (1996) argued that coping with ine stressor can affect individuals’ ability to adapt toa subse- quent stressor through interference with their appatsals (.., higher evaluation of threat), resources, or motivation to cope with the subsequent stressor. Both stressors external to the chronic disease, such as death of a Toved one, and those re- lated tot, such 2 resultant financial strain, are likly to affect adaptation Taylor, Repeti, and Seeman (1997) reviewed characteris tics across multiple environments (¢g., community, family, work) that contribute to adverse health outcomes. They con. cluded that “unhealthy environments are those that threaten safety, that undermine the creation of social ties, and that are ADJUSTMENT TO CHRONIC ILLNESS 393 conflictual, abusive, or violent” (p. 411). Itis reasonable to suggest that these attributes also would provoke adjustment difficulties in those already contending with chronic disease. In addition to these major chronic environmental strains, itis likely that seemingly more benign environments might prove daunting tothe individual with chronic disease. A work envi- ronment that was negotiated facilely prior to illness may be impossible when a person's concentration and energy level are impaired by medical treatment. As Mechanic (1995) noted, disease-related disability results from “a lack of fit be- ‘owen the capacities of individuals and the environment in which they must functica” (p. 1209), ‘Theoretical and empirical reviews reveal that ethnic and cultural factors also influence illness vulnerability, attention toand interpretation of somatic and emotional changes, a per son’s actions regarding symptoms, and subsequent interpre: tations and adaptation (e.g. Angel é& Thoits, 1987; Kato & Mann, 1996; Landrine & Klonoff, 1992; K. Young & Zane, 1995). For example, Angel and Cleary (1984) found that Mexican Americans low in acculturation reported more symptoms than non-Hispanic Whites; however, they were less likely to seck care for those symptoms. High conceal- ment of homosexual identity predicted faster progression in HIV-seropositive gay men (Cole, Kemeny, Taylor, Visscher, & Fahey, 1996). Such concealment may reflect an adopted strategy for avoiding social rejection and stigmatization or a marker of inhibited temperament (Cole et al., 1996). Particu: larly in light ofthe high mortality rates for chronic diseases in some ethnic and cultural groups (e.g., greater age-adjusted mortality rates in African Americans than Whites for heart and cerebrovascular disease, diabetes and kidney disease, AIDS, and cancer; National Center for Health Statistics, 1996), greater empirical atention to ethnic and cultural influ- tences on causes and adaptive consequences of disease is es- sential (see Landrine & Klonoff, this volume). The Interpersonal Context and Social Support. Social support can be conceived as involving interpersonal transactions that offer emotional comfort, information, con- crete aid, orenhanced self-regard (Wills, this volume). Many useful papers are available on the conceptualization and mea- surement of social support (e.g., Cohen & Wills, 1985; Hobfoll & Vaux, 1993: Pierce, J.G. Sarason, &B.R. Sarason, 1996), as well as the influence of social relationships on phys- ical health outcomes (e.g, Cohen & Syme, 1985: Reifman, 1995; Uchino, Cacioppo, & Kiecolt-Glaser, 1996). Although the findings are not without exception (e.g.. Bolger, Foster, Vinokur, & Ng, 1996; Revenson, Wollman, & Felton, 1983), reviews ofthe relation between social support and psychotog- ical adjustment to chronic illness suggest that social support in general is related to positive adaptation to several chronic diseases, including sheumatic diseases (DeVellis, Revenson, & Blalock, 1997), cancer (Blanchard, Albrecht, Ruckdeschel, Grant, & Hemmick, 1995; Helgeson & Cohen, 1996), and cardiovascular disease (Shumaker & Czajkowski, 1994). For example, Duits, Boeke, Tams, Passchier, and Erdman (1997) reviewed 17 prospective studies of adjustment tocoro- nary artery bypass graft surgery (CABG). They found that sos STANT ROWSKE higher preoperative social support predicted more positive postoperative adjustment. Individual studies demonstrate that the impact of social support may vary asa function of at butes of the provider and recipient, as well asthe nature and timing of the support provided. Mechanisms by which social support achieves its effects also are receiving increased atten tion (e-g., Uchino ct al., 1996). Conceptualizations of social support include its use as a ‘coping strategy, as a coping resource in the environment, and as dependent on personality attributes and coping of the individual (Schreurs & de Ridder, 1997). In their review of studies assessing coping and social support in chronic dis- cease, Schreurs and de Ridder (1997) found that prospective studies consistently revealed that a mechanism by which so- cial support promotes positive well-being is through its ef- fect on approach-oriented coping, thus supporting the beneficial effects of social support as a coping resource. For example, in a 4-year prospective study of cardiac patients, Holahan, Moos, Holahan, and Brennan (1997) demon: strated that higher social support and lower stress in familial and extrafamilial domains predicted greater cognitive and ‘behavioral approach-oriented coping, which in turn contrib- uted to lower depressive symptoms. also is clear that the receipt and effectiveness of social support is partially dependent on personal attributes of the re- cipient and the reactions of others. A role-playing experimen, tal study by Silver, Wortman, and Crofton (1990) demonstrated that cancer patients who reported some distress but maintained a positive attitude received more support from, peers than did highly distressed or very well-adjusted pa: tients. In a prospective investigation of rheumatoid arthritis, patients, Smith and Wallston (1992) reported that higher helplessness appraisals were associated with passive coping, inpatients, which in turn was related to lower perceived qual ity of emotional support, and greater psychosocial impair ‘ment and declining self-reported health over time. Recently, a burgeoning interest in negative aspects of so- cial relationships is apparent in the literature. Behaviors from close others that are insensitive, critical, conflictual, withdrawing, or unreceptive can potentiate adjustment diffi- culties in chronically ill individuals (e.g., Herbert & Dunkel-Schetter, 1992; Holahan et al., 1997; Lepore & Helgeson, 1998; Manne, Taylor, Dougherty, & Kemeny, 1997), as can the ill individual's perceived inability to live Upto the expectations of important others (Hatchet, Friend, Symister, & Wadhwa, 1997). Inadequate relationships with medical staff also can be detrimental tahealth and well-be- ing. Lerman etal. (1993) reported that 83% of 97 breast can, er patients cited communication difficulties with the medi- cal team and that communication problems predicted heightened distress 3 months later. Even well-intentioned support attempts may provoke negative outcomes in some ‘cases. Support attempts that lead to dependence, obligation, patronization, lack of control, of reinforcement of maladaptive behaviors (eg. pain behaviors) may impair ad- justment in the chronically ill person (e.g, Coyne, Ellard, & Smith, 1990; Kerns, 1995; Revenson, 1994; Romano et al., 1992), Whereas some researchers have found that both posi tive and negative aspects of support make unique contribu- tions to adjustment to chronic illness (e.g., Holahan et al., 1997; Revenson, Schiaffino, Majerovitz, & Gibofsky, 1991), others have suggested that the potential harmful effects of negative reactions from the social environment outweigh the benefits of positive support (e.g-, Manne et al., 1997), In addition to considering the potentially positive and neg. ative aspects of social support, researchers point to the impor tance of the match between what the individual needs over the itlness course and what is offered by the social milieu in influ- cencing adjustment (c.g., Cutrona, 1996; Mechanic, 1995; Taylor & Aspinwall, 1990). For example, informational sup- port generally is valued from an expert, either a medical pro. fessional or a person who has adjusted well to the same disease, whereas emotional support is valued from family members and friends, as well as from health care providers (e-g., Helgeson & Cohen, 1996; Taylor & Aspinwall, 1990), Even for self-reliant individuals, the rising demands of pro ‘gressive illness may render instrumental and emotional social Support increasingly important, although such demands also ‘may contribute to the erosion of support overtime (e.g., Zich & Temoshok, 1990}. Clearly, specific facets of interpersonal relationships can both aid and hinder adjustment to chronic illness, depending, ‘on the nature of the support attempt, atributes of the provider and recipient, and demands of the illness. Although the con- ceptual and data analytic complexities can be daunting, inti- ‘mate relationships provide rich ground for delineating the complex interplay of factors influencing adaptation for cou ples (e-g., Revenson, 1994) and families (e.g., Kerns, 1995) within the larger social and environmental sphere (e.g. Lepore, 1997). The Personal Contest Cancers not the worst thing that could happen. Things al- ways have turned out well for ine, and Think this wil, too, ven ifthe surgery doesn't work, I'm old, I've had a good, life. Things will be okay. Numerous personality and other individual difference chara teristics have been tested for predictive utility in adjustment 10 chronic disease. There are several paths by which stable indi- vidual difference variables might affect adjustment (Bolger & ickerman, 1995; Costa, Somerfield, & McCrae, 1996; Hew- itt & Flett, 1996). An additive model assumes that personality (or other individual differences characteristics) and coping (or appraisal) have independent, direct effects on adjustment. A ‘mediational model involves coping as a mediator between per- sonality and outcomes, such that people high on neuroticism are more likely to cope through avoidance, which in turn pre- diets poor adjustment, for example, An interactive model im plies that personality and coping interaet, such that avoidant coping is effective for those low in neuroticism but ‘maladaptive for those high in neuroticism, for example. Here, select demographic and personality attributes that are promis- ing are examined as risk or protective factors in adjustment, 2 Demographic and Background Attributes AL though not often a focus of studies on adjustment to chronic illness, demographic and other stable premorbid characteris- ties often are included as covariates or otherwise examined in relation to adaptation. Examples of consistent findings are that younger cancer patients are mote likely to be distressed ‘than older patients (vant Spijkeret al., 1997); that women re port lower quality of life after myocardial infarction (MI) and are less likely to participate and remain in cardiac rehabilita- tion programs than men (Brezinka & Kittel, 1995; Shumaker etal, 1997}; that higher educational attainment is associated with lower disability from rheumatoid arthritis, particularly among men (Leigh & Fries, 1991); and that a premorbid his- tory of psychological disorder confers risk for poor emotional and behavioral outcomes (e.g; return to work) across several chronic illnesses (Taylor & Aspinwall, 1990). Methodologically sound research in this area examines potential confounding factors (e.g.. women are older and sicker upon first MI than men; Shumaker et al., 1997) and compares findings on the variables of interest to those from the general population (e.g., higher rates of depression in ‘women than men). An important direction for research isto ‘examine mechanisms for obtained results, in order to target interventions productively. For example, are older adults with cancer less distressed than younger adults because they experience less violation of cognitive schemas, they engage in more positive downward social comparisons, and they per ceive less attendant blockage of central goals, oristhe age dif ference an epiphenomenon of younger adults’ propensity to report greater distress in general? Personality Characteristics. The five basic factors of personality (i.e., neuroticism, extraversion, openness to experience, agreeableness, conscientiousness) have gar- nered attention in the broader coping literature (c.g. Bolger 1990; Costa et al., 1996). For example, neuroticism’s asso- ciation with maladjustment appears to be mediated through use of greater avoidant and less approach-oriented coping (eg, social support, problem-focused coping; see Costa et al,, 1996; Hewitt & Flett, 1996, for reviews). An interactive mode! of effects of neuroticism and coping on adjustment also has received support (Bolger, 1990). These personality factors have received less attention with regard to adjust. ‘ment to chronic disease. In 7-year longitudinal study of ad- justment to sheumatoid arthritis, Smith, Wallstony and Dwyer (1995) found that negative affectivity (typically con- sidered equivalent to neuroticism) was empirically distinct from disease impact variables (i.e., pain, functional impair- ment). Further, controlling for negative affectivity, disease impact was associated uniquely with several components of sick-role behavior (e.g; information seeking, use of medical treatments) and with some adjustment indices (e.g. life sat- isfaction, fatigue) but not others (e.g.; depressive symp. toms). In another longitudinal study, Affleck, Tennen, Urrows, and Higgins (1992) found that catastrophizing cop- ing partially mediated the relation between neuroticism and, chronic negative mood and pain in arthritis patients. AL ADJUSTMENT TO CHRONIC NI 305, ‘though neuroticism may be an important precursor of coping and other adjustment-related variables, it does not appear to account for the lion's share of the variance in predicting ad- justment. Thus, coping is not just" neuroticism. Rather than being considered merely a nuisance variable in research, however, high neuroticism might be viewed as an immedi- ately identifiable risk factor in those who confront chronic disease, whereupon early intervention can be instituted (0 diminish maladjustment. The personality factor of consci- centiousness also deserves more attention in research on ad- jJjustment to chronic disease, as it appears to predict positive physical health outcomes in healthy samples (Friedman et al., 1995). Dispositional optimism (Scheier & Carver, 1985),a.con- struct reflecting generalized expectancies for favorable out- comes, appears to be a promising predictor of positive adjustment to illness. Moderately negatively correlated with neuroticism but demonstrating discriminant validity (see er etal., 1993), optimism has been studied in longitudi- ral investigations of cancer, coronary heart disease, and HIV, Carver et al. (1993) examined optimism as a prospec- tive predictor of well-being in women undergoing breast cancer surgery. Assessed prior to surgery, optimism was as- sociated positively with approach-oriented coping (c.g. ac- tive coping, planning, realistic acceptance) and negatively with avoidant coping (c.g., denial, behavioral disengage- ment). Controlling for prior distress, optimism predicted lower distress at 3, 6, and 12 months after surgery, relations. that were partially mediated through coping strategy use, particularly acceptance, denial, and behavioral disengage- ‘ment. Stanton and Snider (1993) also found that coping (i... cognitive avoidance, positive focus) partially mediated the effect of optimism on distress and vigor prior to surgery for breast cancer, but that optimism did not prospectively pre- diet distress following surgery. Assessed prior to CABG. surgery, dispositional optimism correlated positively with problem-focused coping and negatively with denial (Scheier et al., 1989). Moreover, optimism predicted faster hospital recovery and faster return to normal life activi- es 6 months later. In a sample of HIV+ and HIV m Lutgendorf et al. (1995) found optimism to be associated with the use of active coping strategies and with lower psy- chological distress (see also Taylor etal., 1992). These find ings suggest that optimism may be an important protective factor in those adjusting to chronic disease, at least in part wromotion of actively engaged coping strategies. AAs the foregoing illustrates, investigation of these and other individual difference characteristics (e.g, self-esteem: Katz et al., 1995, and Druley & Townsend, 1998; locus of control: Reich, Zautra, & Manne, 1993; Type A behavior pat- tern: Denollet & De Potter, 1992) can illuminate risk and pro- tective factors in adjustment to illness. Such factors often ean be assessed easily inthe earliest phases of diagnosis and treat- ‘ment. Because interventions are not readily available to mod- ify stable personal dispositions, however, the examination of mechanisms (e.8.. coping, appraisal) by which these attrib- utes have their effeets also Cognitive Appraisals ‘The most frustrating partis the loss of contro, from not be ing ableto work rightnow to notknowingiif the cancer will ccome back, and not being able to do a lot to prevent it. hate feeling out of control Researchers have studied many sorts of cognitive appraisals in relation to chronic disease (e.g, disease representation; Leventhal & Nerenz, 1983). Here, the focus is on those sub’ sumed in the Lazarus and Folkman (1984) framework. Primary Appraisal. Primary appraisal, involving the individual's determination of a potentially stressful encoun- ter’s significance for well-being through assessments of threat/harm and challenge/benefit in the encounter, plays @ pivotal role in stress and coping theory (Lazarus & Folkman, 1984), However, primary appraisal processes have received little empirical attention relative to coping processes, owing in part to lack of consensus regarding conceptualization and ‘measurement. Studies reveal that individuals with chronic ‘medical conditions see the potential for both harm and benefit from their experience (e.g., Stanton, 1991; Stanton & Snider, 1993). For example, a woman diagnosed with breast cancer might judge her experience as involving loss, whereby she must give up a body part; threat, in that her life expectancy and goals for work and family roles may be curtailed; and challenge, as her diagnosis represents an opportunity to reor- der priorities and draw closer to her partner, Waltz, Badura, Pfaff, and Schott (1988) found that primary appraisals of threat and harnvloss were important predictors of subsequent anxiety and depression in 372 male cardiac patients. Stanton and Snider (1993) found that, prior to biopsy for breast can- cer, women who perceived greater threat to a mumber of life realms from the potential diagnosis were more distressed Prebiopsy threat and challenge appraisals didnot predict sub- sequent negative and positive affect on diagnosis or surgery, however. With continued refinement of the primary appraisal construct (e.g. Lazarus, 1991a), it may prove a valuable tool for understanding individuals’ goal structures and their as- sessment of how chronic disease may impede or further cen- tral aims, Secondary Appraisal. In secondary appraisal, the fol- towing question may be posed, “What, if anything, can I do, about this situation?” Thus, an individual's capacity to man- age oF change the situation is assessed. Smith and Lazarus (1990) refined the secondary appraisal construct to inefude cognitive evaluations of accountability for blamelereit, po tential for problem- and emotion-directed coping attempts, and expectancies revarding potential for change in the situa tion. Underlying secondary appraisal, and garnering substan tial attention by researchers, is the question of what people can and cannot contol in their experience. A central quality of chronie disease is that control over progression and ulti- mate outcome of the disease is not guaranteed, despite ind viduals’ intense efforts to pursue medical cae and implement lifestyle modifications. Thus, the suceess of primary control attempts (Rothbaum, Weise, & Snyder, 1982) is uncertain, al though a person may generate the perception of substantial control (e.g., Taylor, Lichtman, & Wood, 1984). Further, across several chronic diseases, individuals are likely to dis cover controllable aspects of their experience, perceiving greater control over the consequences of their disease (e.g.. symptoms, daily management) than over the course of their disease (¢ g.. rheumatoid arthritis: Affleck, Tennen, Pfeiffer, & Fifield, 1987; AIDS: Thompson, Nanni, & Levine, 1994; cancer: Thompson, Sobolew-Shubin, Galbraith, ‘Schwankovsky, & Cruzen, 1993), Research demonstrates that control appraisals can influ cence both the choice of coping strategies and adjustment ‘across time. Findings from the general literature on stress, ap- ‘praisal, and coping, in which situations of relatively high con- trollabilty are associated with more problem-focused coping attempts and low control situations with use of emotion-fo- cused coping (e.g., Folkman & Lazarus, 1980), are mirrored in the chronic disease literature. For example, Folkman, Chesney, Pollack, and Coates (1993), ina longitudinal study of 425 HiVs and HIV- gay men, found that high perceived control over a self-selected stressful situation was associated with greater approach-oriented coping (ve., problem solving, information seeking, positive reappraisal), which in tur pre~ dicted decreased depressed mood after controlling for prior depressed mood and HLV symptoms. ‘Another observation from the chronic disease literature is that the specific control domain matters with regard to pre- dieting adaptive outcomes. Several studies have revealed that perceived control over disease consequences (€.g.. symp- toms) is associated more strongly with positive adaptation than is appraised control over disease course (eg. Affleck et al, 1987; Thompson etal, 1993, 1994). Further, perceptions of control in specific domains interact with other aspects of the disease to influence adjustment, For example, Affleck and colleagues (1987) found that, in the context of severe rheu- matic disease, those who perceived more control over disease course evidenced more mood disturbance, whereas those who perceived more control over disease symptoms reported less mood disturbance. Thus, high control appraisals may be adaptive when the severe threat is controllable but may hinder adjustment when the threat is realistically uncontrollable (see also Helgeson, 1992). Itis clear that control appraisals regarding disease are multi- dimensional. In adapting to disease, individuals are likely to shift attention from uncontrollable dimensions toaspects of the illness that carry the potential for control and perhaps to add tional controllable life goals. Belief that an individual has con- trol in realms that in factare responsive to control attempts may bolster adaptation. Such findings suggest the importance of differentiating empirically among various potential control do- mains and of examining precursors of control appraisals. Coping Processes Ido a bunch of things. [talk to my wife. I get as much in- formation as ean about weatments and the latest research. Trely on my faith Fry to live each day as T want to. a at Faced witha chronic disease, most individuals initiate a vasi- ety of attempts to manage the associated stressors, Broadly, oping atemps may be drested toward solving the problem thang (ie, problem-focused coping) or mansging emotions associated with the stressor (je, emotion-focused coping) (Folkman & Lazarus, 1980), Thus, a person with AIDS may initiate a complex medical treatment regimen, aswell a gar tering comfort from friends, Several conceptual and empiri= cal limitations accompany this distinction (e-., Staton, Danoft-Burg, Cameron, & Elis, 1993), however, and re searchers have demonsrated that the problem and emo- tion-focused coping categories can be subsumed under the higher order classification of approach- versus avoid: ance-orlented coping mechanisms (e-., Tobin, Holroyd, Reynolds, & Wigul, 1985). Examples of spproach-orented strteges are coping throsgh seeking social suppor, active postive reframing, information seeking, problem solving, and emotional expression. Avoidant strategies include denial, distraction, cognitive avoidance, and behavioral disengage” ment, Yet other processes, such as religious coping, poten tally can serve ether approach-oriented or avoidant goals Reviews of the general literature (Roth & Cohen, 1986; Suls & Pletcher, 1985) suggest that avoidant and approach strategies vary ineffectiveness asa function ofthe temporal Sequence and characteristics of stressors. Avoidant strategies temporarily may reduce the effects of acute, severe stressors because they prevent one from becoming overwhelmed when emotional resources ae limited. As stress persists, however, approach strategies afford opportunities for ations that may alleviate the stesso or its emotional concomitant By definition, chronic disease sa long-term stesso, for which the coping demands and ther efficacy may vary over time, Although avoidant coping has been demonstrated use- ful at circumscribed points, ts general untoward impact on adjustment is evident in numerous studies, For example, Le vine et al. (1987) found that male cardiac patents high on de- nial of therillness spent fewer days in the coronary eae unit and had fewer indications of eardie dysfunction during hos- pitaliation than did nondenirs. However deniers were less Compliant with exercise training and had more days of fehospitalization during the year following discharge Stanton and Snider (1993) found tat greater use of cognitive avoidance coping prior o breast biopsy predicted more dis: tress at that point, after cancer diagnosis and after surgery (ith intallevels of dstess controlled; se also Carveretal, 10993) Reviewers ofthe chronic disease iterature demon” strate consensus inthe conclusion that avoidant coping i mmaladapiveoverthelong term (eg, DeVelliset al, 1997, for ‘heamate disease; Folkman, 1993, for HIV), Reviewing the literature across several diseases, Maes et al. (1996) con- cluded that “avoidant emotion-focused coping strategies are related io por psychological adjustment and poor adherence {© medieal advice..." (p. 235). Why is avoidant coping maladaptive? Certainly, avoiding the velity of disease wll impair both active problem-focused and emotion-focused coping attempts. Avoidant coping itself may take maladaptive pats, such as excessive drinking or drug use Further, cogaitve avoidance paradoxically may prompt in ADJUSTMENT TO CHRONIC ILLNESS 307 trusion ofthe threatening material (Horowitz, 1986; Wegner & Pennebaker, 1992), in turn amplifying distress. In general, research also suggests a complementary advan- tage for approach-oriented coping strategies in bolstering ad justment to chronie disease (e.g., Fleishman & Fogel, 1994; Holahan ef a, 1997), For example, L. D. Young (1992) re- viewed the literature on rheumatoid arthritis, concluding, “ac- tive, problem-focused coping attempts (e.g., information seeking, cognitive restructuring, pain control, and rational thinking) were consistently associated with positive affect, betterpsychological adjustment, and decreased depression” (P 621). However, tis chapter concurs with the conclusion of Macs et al. (1996) that the findings for the association of ap- proach-oriented strategies and better adjustment are nota con- sistent as those forthe relation of avoidant coping and poorer adjustment. This difference may occur because approach: oi ented strategies (particularly problem: focused approach) may notbe effective inthe case of uncontrollable aspects of disease, because the utility of approach-oriented stategies is out weighed by the disutility of avoidant strategies when both are examined, or because adjustment indices used typically assess negative e.., depression) rather than positive (e.g. ie satis faction) adaptation, which may have differential relations with approach-oriented and avoidant coping (e.g., Blalock, DeVellis, & Giorgino, 1995; Stanton, 1991). yond these associations of higher order coping ap- proaches with adjustment, consistent relations of adjustment with any particular coping strategy are more difficult to dis: cern. However, intensive research on specitic coping mecha- nisms ig beginning to prove fruitful, for example, that on social comparison (Buunk & Gibbons, 1997; Taylor & Lobe, 1989), focusing on benefit (Affleck & Tennen, 1996), and emotional processing and expression (Kelley, Lumley, & Leisen, 1997; Stanton et al, 1994, 1997; Stanton & Franz, 1999), Theoretically grounded longitudinal and experimental research that takes into account sich factors as the specific problem with which the individual is coping and the relevant Adaptive outcomes (¢-g., Blalock et al., 1995), the intentionality of the coping effort (Compas, Connor, Osowiecki, & Welch, 1997), the larger interpersonal and en- vironmental context (e.g.. Revenson, 1994), and measure- sent issues in the assessment of coping (Coyne & Gotlieb, 1996) will advance understanding of the process of coping with chronic illness. FUTURE DIRECTIONS IN RESEARCH ON ADJUSTMENT TO CHRONIC ILLNESS Obviously, the factors that influence adjustment to chronic ill ‘ess have been painted in broad strokes, focusing on promising constructs and crosscutting themes. Although this chapter has attempted to provide a modicum of critical analysis of this lit- erature, readers are encouraged to pursue the cited references for deeper examination of issues of particular interest. In ad~ dition, the categories of predictors on which this chapter has focused also have been suggested to influence disease onset, progression, and survival (e.g., Epping-Jordan, Compas, & 398___ STANTON, COLLINS. SVOROWSKL Howell, 1994; Ickovies et al-, 1999; Mulder, Antoni, Duivenvoorden, Kauffmann, & Goodkin, 1995; Scheier & Bridges, 1995). Thus, continued investigation is warranted for understanding factors that bolster and impede both quality, of life and disease endpoints. The review of the literature suggested considerable indi- vidual variability in response to chronic disease, within the context of generally positive adjustment. Several risk and protective factors were identified that predicted adjustment ‘consistently across chronic diseases. However, few research cers have compared predictors of adjustment across diseases in single studies. Research identifying meaningful differences among diseases (e.g., degree of life threat, pain, required be- havior change), their relations with adaptive outcomes, and mechanisms for differential relations across diseases is war- ranted, Further, much more is known about predictors of neg, ative psychosocial outcomes than is known about contributors to positive functioning. The literature’s promi- nent focus on negative affect as an outcome has yielded valu. able findings. However, in limiting their attention to indicators of maladjustment, researchers may fail to uncover, important contributors to positive functioning Development and testing of disease-specific theories, con- tinued refinement of stress and coping theories, and compari- son of the predictive utilities of competing theories are important venues for further research. Application of other es: tablished psychological and biological theories also are prov- ing productive in enhancing our understanding of adjustment to chronic disease (e.g., Andersen, Kiecolt-Glaser, & Glaser, 1994; Andersen et al, 1997; Calfas, Ingram, & Kaplan, 1997; Glaser & Kiecolt-Glaser, 1994; Stanton et al., 1998). Longitu-

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