Adaptation
Pamala D. Larsen
Faye I. Hummel
INTRODUCTION
Persons with chronic illness chart a life course to successfully navigate the challenges that are inherent within themselves, their relationships, or the setting in which they find themselves. Throughout the course of their illness, individuals must rely on a healthcare system in which pharmaceuticals, machines, and a wide array of technology have become the hallmarks of quality health care. Although the disease focus may be appropriate intermittently during the trajectory of a chronic illness to meet the physical needs of the individual, this perspective does not meet the social, psychological, and emotional needs of clients with chronic conditions. In other words, the disease focus of the healthcare system does not and cannot manage the illness experience of the client and family.
Early work by Visotsky, Hamburg, Goss, and Lebovits in 1961 in studying clients with polio posed some initial questions regarding adaptation. They asked their clients how it was possible to deal with this stressor, polio, and what coping behavior(s) could predict a favorable outcome. Fifty years later, the same questions are being asked. Although we have made progress in understanding certain components of adaptation, many questions remain unanswered.
The lens for viewing chronic illness is determined by numerous variables within the person as well as how the healthcare professional and the setting providing care view the chronic condition. The elderly woman with arthritis who has been socialized to the primacy of medicine in the healthcare arena may rely solely on her physician-prescribed pharmaceutical treatment of her joint pain and fatigue. On the other hand, a young man with Hepatitis C gathers information from a wide variety of sources regarding the treatment and management of his chronic condition and maintains control of his treatment plan. The adaptation mechanism of the elderly woman and the young man are very different as well. Each individual brings to the illness their own uniqueness—personality traits, past experiences, culture, values—to influence the adaptation process in his or her own way.
Defining Adaptation
The terms adjustment and adaptation are used interchangeably in the literature (Stanton & Revenson, 2007) and will be in this chapter as well. Sharpe and Curran (2006) define adjustment as a response to a change in the environment that allows an organism to become more suitably adapted to that change (p. 1154). Most definitions of adjustment or adaptation, however, elude to the lack of a psychological disorder being present. An early description of adjustment (and a continuing one) is the absence of a
diagnosed psychological disorder, psycholo-gical symptoms, or negative mood (Stanton, Revenson, & Tennen, 2007). Even in Visotsky’s study in 1961 with clients with polio, there was a movement to discount that definition. While the presence or absence of a psychological disorder may be a part of adjustment, it is only one indi-cator of it.
diagnosed psychological disorder, psycholo-gical symptoms, or negative mood (Stanton, Revenson, & Tennen, 2007). Even in Visotsky’s study in 1961 with clients with polio, there was a movement to discount that definition. While the presence or absence of a psychological disorder may be a part of adjustment, it is only one indi-cator of it.
Adjustment to illness has been operational-ized as good quality of life, well-being, vitality, positive affect, life satisfaction, and global self-esteem (Sharpe & Curran, 2006). Conversely, adjustment disorder is defined as the develop-ment of clinically significant emotional or behavioral symptoms in response to an identifi-able stress or stressor (American Psychological Association, 2000).
There is little consistency in the literature in defining adaptation or adjustment. Each author/researcher defines adaptation or adjust-ment differently based on their own theoretical framework or outcome measurement. As one example, Kiebles, Doerfler, and Keefer (2010) in their study of adjustment to inflammatory bowel disease defined adjustment as a compos-ite of perceived disability, psychological func-tioning, and disease-specific and health-related quality of life (p. 1).
This chapter provides an overview of adap-tation in individuals with chronic illness. With entire books devoted to coping and adaptation, the depth of this chapter is limited. However, classic sources and models are included, along with interventions appropriate for individuals and families with chronic illness.
IMPACT
Conceptualization of Adjustment
Stanton and Revenson (2007) identified five attributes of adjustment: 1) chronic illness necessitates adjustment in multiple life domains; 2) there are positive and negative outcomes of adjustment; 3) adjustment is dynamic; 4) adjust-ment can be described only within the context of each unique individual; and 5) heterogeneity is the rule rather than the exception in adjustment. Each of these concepts are further described in the sections that follow.
Chronic Illness Necessitates Adjustment in Multiple Life Domains
We know from caring for clients that adjust-ment is more than just physical; it crosses interpersonal, cognitive, emotional, and behavioral domains. Adjustment is a holistic event in the client, with all domains being interrelated. Therefore, a change in one domain may affect adjustment in another domain (Stanton & Revenson, 2007; Stanton, Collins, & Sworowski, 2001; Stewart, Ross, & Hartley, 2004). Cognitive adaptation might involve personal self-evaluation or self-reflection. Adap-tation in the behavioral domain includes returning to work or resum-ing the role of the “breadwinner” of the fam-ily. Anxiety, in the emotional domain, may affect the ability to socialize in the interper-sonal domain or influence blood pressure in the physical domain. Emotional adaptation could be the absence of depression, and inter-personal adaptation may be the willingness to be “social” again. Again, each domain may affect the other.
Adjustment Involves Both Positive and Negative Outcome Dimensions
Typically we think of outcomes of chronic ill-ness as being negative, as evidenced by dis-tress, psychological dysfunction, relationships in disarray, and so forth. As stated previously, one definition of positive adjustment is the
absence of a psychological disorder. However, there may be a positive side of chronic illness as well.
absence of a psychological disorder. However, there may be a positive side of chronic illness as well.
It is not unusual to hear individuals with chronic illness say things like, “having this dis-ease has been the best thing that ever happened to me-it made me wake up to see what was important.” There may be positive aspects of chronic disease, but how clients come to view it in this way is not known. Folkman, Moskowitz, Ozer, and Park (1997), in their study of HIV-positive and HIV-caregiving partners of men with AIDS, found that although study partici-pants reported high levels of depressive symp-toms, they also demonstrated positive morale and positive states of mind when compared with general population norms.
One way to describe these paradoxical findings is a concept called response shift. Sprangers and Schwartz (2000) coined this phrase to describe a change in the meaning of one’s self-evaluation of a target construct as a result of 1) change in an individual’s internal standards of measurement, 2) change in the individual’s values, or 3) reconceptualization of the target construct (p. 12).
Although anecdotally we consider negative outcomes of chronic illness more common, research demonstrates that positive adjustment may more accurately represent the adjustment experience of most individuals with chronic dis-ease (Stanton & Revenson, 2007).
Adjustment Is a Dynamic Process
Adjustment to chronic illness is neither linear nor lockstep (Stanton & Revenson, 2007, p. 568). As exacerbations occur-as in rheumatoid arthritis or multiple sclerosis, the cancer recurs, or the physical limitations of heart failure increase, each change requires readjustment or readapta-tion. In addition, changes may not be limited to changes in one’s physical condition that affect adaptation, but changes in the rest of the individ-ual’s life. A spouse loses his/her job, a child is seriously injured, or a parent is no longer able to care for him-or herself are examples of factors that affect the adaptation of the client with chronic illness.
Adjustment Can Be Viewed Only from within the Context of the Individual
There is variability in adaptation, and that is to be expected. From the context of the individual, the physical symptoms, the functional changes, and the uncertainty may or may not be pertinent to the individual. Each stressor of the illness has a different relevance for each individual, and as a result will elicit a different reaction from each individual. The context of each individual is dif-ferent, whether it be his or her age, gender, eth-nicity, or socioeconomic status. The 35-year-old married woman with three grade-school-aged children with newly diagnosed breast cancer has a different context than the 80-year-old woman with the same diagnosis. Although that is an extreme example, the variation that exists among individuals cannot be underestimated.
Heterogeneity Is the Rule, Not the Exception
Anecdotally we know that if we put 20 women of the same age with the same stage of breast cancer and same prognosis in a room, each of those indi-viduals will adapt to their chronic condition differ-ently. Some will be considered by most as “well adjusted,” whereas others might be considered maladjusted. The remaining individuals may fall somewhere in the middle. The person’s individual determinants and uniqueness affect the ability of the individual to adapt to the illness. Although commonalities exist among individuals with chronic illness, there is significant variability as well.
Differences in individual adjustment abound in the literature. Helgeson, Snyder, and Seltman (2004) in a study of women with breast cancer from 4 to 55 months after diagnosis found that 43% of the sample evidenced high and stable psychological quality of life, 18% had a somewhat lower quality of life, 26% evi-denced low psychological functioning, and 12% had an immediate and substantial decline in psychological function.
Dew and colleagues (2005) identified five groups of distinct distress profiles in heart transplantation patients over several years. Groups evidenced: 1) consistently low distress; 2) consistent, significant levels of distress; 3) high distress for the initial 3 months; 4) high distress at 3 years; and 5) fluctuating distress.
The Self in Chronic Illness
Chronic illness changes the body and forces identity changes (Brink, 2009). Before illness, most individuals take their health for granted. Any disruption of normality may cause a threat to the self (Charmaz, 1995). Bury (1982) concep-tualizes this as a biographical disruption. The meaning of the illness and biographical disrup-tion vary in significance for the individual and family. One’s self-concept and self-confidence may change due to chronic illness. Morea, Friend, and Bennett (2008) refer to the illness self-concept (ISC). The ISC, according to the authors, is the integration of illness into the self and, in turn, it affects the adjustment to chronic illness.
Brink (2009), in her study with patients who were post-myocardial infarction, identified two different behaviors in her model: self-modifying and self-protecting behaviors. For example, self-protecting behaviors may block lifestyle changes (p. 132). Individuals with self-modifying behavior reoriented themselves to the situation and accepted the consequences of the illness. Identifying a client’s behavior can better help the healthcare professional in planning appropriate interventions.
Models
As researchers, we have a broad goal to under-stand the process of adaptation, predict out-comes, and by having predictive ability be able to modify interventions to meet the needs of our clients. A model that is able to perform all those activities is preferable for practice; however, a perfect model does not exist at this time. What follows are sample models from the literature.
Biomedical Model
The medical model provides a framework for assumptions about the nature of health and illness. The client is a complex set of anatomic parts and interrelated systems. Anatomic, physi-ologic, and/or biochemical failures translate into etiologies of ill health, thus promoting a disease-oriented approach to care. This theoreti-cal perspective of chronic illness is reflected in the language and actions of healthcare profes-sionals who refer to “the diabetic in room 328,” rather than to Mrs. Sanchez, who has diabetes.
Pathophysiology, pharmacotherapy, and technology are emphasized and become promi-nent in the diagnosis and intervention of all illness and disease, albeit acute or chronic. Antonovsky (1979) considered the medical model a dichotomous model. If pathology is present, then there is illness, and wellness or health is not possible. Explanatory assumptions and theories are used for determining the cause of symptoms, and uniformity of causality and treatment of disease is inferred.
The biomedical paradigm tends to medical-ize all human conditions in which symptoms can be controlled and cured with biomedical strategies. This model reduces the individual to a disease and fails to recognize the human aspects and experiences of the individual who happens to have a chronic illness (Sakalys, 2000), and diminishes social and cultural expla-nation of disease (Mirowsky & Ross, 2002). Physical complaints and signs or symptoms of disease become the hallmarks of interaction and discourse within the healthcare arena.
The relationship between the healthcare professional and the client with chronic illness is one of objectivity, biological pathology, diag-nosis, and signs and symptoms, all of which require medical interventions. Healthcare pro-fessionals tend to shield themselves from the human aspects of chronic illness, while their skill sets, techniques, and procedures become the focus of interaction with the client (Freeth, 2007). Power and expertise are held exclusively by the healthcare system, and the interactions between the healthcare professional and the cli-ent are directive and unbalanced. The individual with chronic illness becomes disempowered to engage in his/her own healthcare decisions and relies solely on the healthcare professional.
The biomedical model is insufficient in providing health care to individuals with chronic illness (Waisbond, 2007), as it fails to acknowl-edge the breadth and depth of the illness experi-ence. This model does not acknowledge the person with the chronic condition, who holds knowledge and expertise about the factors that influence his/her physical symptoms of chronic disease, in other words, the expert patient. For example, at the end of the month, Mrs. Jones becomes anxious that she will not have enough money to purchase her prescriptions for her hypertension. Although she is able to financially manage, Mrs. Jones’s stress and worry exacer-bate her hypertension. Mrs. Jones does not inform her physician that the probable cause of her elevated blood pressure is related to her stress. The physician responds to Mrs. Jones’s hypertension with a change of medication to manage her symptoms. The quantification of all signs and symptoms of disease fails to address the total illness experience of the individual. With increased attention to genetic research and gene technologies, the biomedical theories of disease continue to be reinforced, with less emphasis on the individual’s social context and experiences (Dixon-Woods, 2001).
Despite the limitations of the biomedical model in adaptation, its usefulness is apparent during the acute phase of chronic illness. Although the focus of the biomedical model is limited to disease and organic dysfunction, this model is central for adaptation to chronic ill-ness, particularly at the time of diagnosis when individuals and families are overwhelmed with a new diagnosis and sorting out the facts about the illness. In addition, during periods of illness exacerbations, the biomedical model helps explain signs and symptoms and may provide a source of retreat and relief, depending on the stage of the chronic illness. There are times when individuals and families need current information about the chronic illness, signs and symptoms, the anticipated trajectory of the illness course, the array of treatment modalities, and traditional as well as alternative strategies. The biomedical model is the foundation for evidence-based healthcare practice and provides the gold standard for treatment and intervention. As a consequence, this model provides measur-able goals for treatment and client outcomes relative to morbidity and mortality.
Chronic Care Model
The goal of chronic illness care is to manage symptoms and minimize disability rather than cure disease. The Chronic Care Model in which client self-management is a key component (Bodenheimer, Lorig, Holman, & Grumback, 2002) was developed to address deficiencies in the medical model of healthcare systems in managing chronic conditions. The Chronic Care Model first appeared in the literature in 1998 (Wagner, 1998) and was later refined by Wagner and colleagues (Wagner et al., 2001). Subsequent research of interventions with chronic illness has resulted in best practices and a national program for improving chronic illness care (Robert Wood Johnson Foundation, 2006-2011). The Chronic Care Model is proac-tive and is focused on keeping the person with chronic illness as healthy as possible. Within this model, six major elements interact to pro-duce high-quality care and evidence-based interventions for persons with chronic condi-tions in health systems at the community, orga-nization, practice, and individual levels. The six elements are: 1) the healthcare system or healthcare organization; 2) clinical information systems; 3) decision support; 4) delivery sys-tem design; 5) self-management support; and 6) community, including organizations and resources for clients with chronic illness (Wagner et al., 2001).
As new treatment modalities for chronic illness become available, it is imperative for the healthcare provider to evaluate these interven-tions in relation to the elements of the Chronic Care Model. In doing so, the healthcare pro-vider is able to assume a leadership role in improving the care and outcomes for persons with chronic conditions (Dancer & Courtney, 2010).
The Chronic Care Model has been used in caring for individuals with a variety of chronic conditions. Diabetes, in particular, has provided much research to support the model’s effective-ness. Diabetes care modeled after the Chronic Care Model improved the overall quality of care and outcomes. This care included self-management support for persons with diabetes through goal-setting, follow up, referrals to com-munity resources, and support for delivery sys-tem redesign (Siminerio, Piatt, & Zgibor, 2005).
Lazarus and Folkman Model
Although there are other stress and coping mod-els, none are more well known than the one developed by Richard Lazarus and Susan Folkman (1984). Their model, a cognitive-phenomenological theory of stress, views adap-tation to chronic illness through adapting to stressors. It is a transactional model of stress and coping, meaning that antecedent variables, such as personality traits, past experiences, and disease and treatment variables, act via mediat-ing variables, such as coping strategies, to facil-itate outcomes, and, in this case, adaptation. Stressors are mediated by primary appraisal, which is the individual’s gauge of the signifi-cance and importance of the stressor. Primary appraisal is influenced by the background, expe-riences, culture, ethnicity, and personality of the individual, and is, therefore, characterized by stability across situations (Folkman, Lazarus, Gruen, & DeLongis, 1986).
The second step of the model is secondary appraisal of the situation. The individual asks the question, “What can I do about this situation?” and this leads to the coping strategies used to manage the stressor. Secondary appraisal is influ-enced by the physical and social environment and may be context specific (Stewart et al., 2004). To
adapt involves applying the coping strategies that are most appropriate to the situation. Individuals use both problem-focused coping and emotion-focused coping. Originally it was presumed by Lazarus and Folkman that the goal for all indi-viduals was to utilize problem-focused coping, and that emotion-focused coping yielded poor adaptation to the stressor, in this case the illness. However, work since 1986 has supported that there is a place for emotion-focused coping as well as problem-focused coping (Stewart et al., 2004).
adapt involves applying the coping strategies that are most appropriate to the situation. Individuals use both problem-focused coping and emotion-focused coping. Originally it was presumed by Lazarus and Folkman that the goal for all indi-viduals was to utilize problem-focused coping, and that emotion-focused coping yielded poor adaptation to the stressor, in this case the illness. However, work since 1986 has supported that there is a place for emotion-focused coping as well as problem-focused coping (Stewart et al., 2004).
Engel’s Biopsychosocial Model
Clearly a model that could address both the bio-logical and psychosocial aspects of chronic dis-ease would be a preferred one for health care. Engel (1977) was perhaps one of the earliest authors of such a model. The main theme of the model is the influence of biological, psychologi-cal, and social influences on the disease process. Engel’s model outlined three ways in which a psychosocial factor could influence a health outcome: direct, indirect, and moderating. A direct effect would be a belief or value of the client that would preclude him or her from a specific medical intervention. An indirect effect would be defined through a mediational process (Stewart et al., 2004). An example would be an individual’s current symptoms, for instance nausea and vomiting, decreasing the client’s motivation to participate in a prescribed exer-cise regimen, and thereby decreasing physical functioning. A moderating effect alters the causal relationship between a psychosocial fac-tor and a health outcome.
Livneh and Antonak Model
Livneh and Antonak (1997), working from pre-vious models, proposed that variables associated with chronic illness could be organized into four main categories: 1) disability-related (e.g., type of condition-terminal vs. nonterminal); 2) sociodemographic factors of the individual (e.g., gender, age, ethnicity); 3) individual differ-ences or personality (e.g., coping strategies, locus of control, personal meaning of the condi-tion); and 4) social and environmental factors (e.g., social support, stigma). The interactions of these classes of variables significantly affected adaptation.
Livneh and Antonak (1997) also saw the adaptation process as different from adaptation itself. They theorized that the process of adapta-tion was fluid and dynamic, whereas adaptation status was the end result or outcome of the process (Stewart et al., 2004).
Common Sense Model of Self-Regulation
The Common Sense Model of Self-Regulation (Leventhal, Leventhal, & Cameron, 2001) posits that the client’s illness beliefs and representations of that illness influence adaptation to the illness and health outcomes. According to the model, patients develop cognitive and emotional repre-sentations of their condition to “make sense” or find meaning in the illness. Leventhal and col-leagues (2001) identified five dimensions that represent a client’s view of their illness: 1) identity of the illness-connecting the symptoms with the illness and having an understanding of the illness; 2) timeline-duration and progression of the ill-ness; 3) causes-perceived reason for the illness; 4) consequences-what will be the physical, psy-chosocial, and economic impact of the illness; and 5) controllability-can this disease be con-trolled? Cured? After identification of these dimensions, Leventhal and colleagues believe that coping and appraisal follow. There is significant evidence that an adaptive perception of a
curable/controllable illness is related to better health and functioning (Hagger & Orbell, 2003).
curable/controllable illness is related to better health and functioning (Hagger & Orbell, 2003).
The Common Sense Model has been used extensively as a framework in research in chronic illness. Several examples follow:
Relationship of illness representations and the end-stage appraisal of outcomes in clients with chronic cardiovascular disease (Karademas, Kynigopoulou, Aghathangelou, & Anestis, 2010)
Prediction of self-care behaviors in patients with end-stage renal disease (O’Connor, Jardine, & Millar, 2008)
Prediction of disability by illness beliefs in clients with rheumatoid arthritis (Graves, Scott, Lempp, & Weinman, 2009)Stay updated, free articles. Join our Telegram channel
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