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Psychosocial Adjustment Pamala D. Larsen

Introduction In previous editions, this chapter was titled “Adaptation.” The literature uses the terms “adaptation” and “adjustment” interchange-ably. Although either term could be used, this author prefers the term “adjustment,” as the term better describes a process as well as a final outcome. Adjustment refers to the changes in life that are made continuously when one has a chronic illness. Adjustment is not static, but dynamic.

What is interesting about the terms “adap-tation” and “adjustment” is that psychologists describe these terms as psychological adjust-ment or adaptation, whereas in nursing the more common phrase is psychosocial adjustment or adaptation. “Psychosocial” is a broader term and takes into account the social environment as well as the psychological state of being, that one can-not be separated from the other. “Psychosocial” is, therefore, a more inclusive term, while “psychological” is one-dimensional. Thus, in the discipline of psychology, studies describe psychological adjustment, while psychosocial adjustment is encountered more frequently in nursing. However, to be true to each author’s intent in the studies and articles described in this chapter, whatever term the author has used

in the article—“adjustment” or “adaptation”—will be used to describe the study.

Individuals with chronic illness uncon-sciously or consciously chart a course to navigate the challenges of a chronic disease. Throughout the course of their illness, they must rely on a healthcare system in which pharmaceuticals and technology are the hallmarks of quality health care. Although a disease focus may be appropri-ate to meet the physical needs of the individual, particularly in the acute phase, this perspective does not meet the social, psychological, and emotional needs of patients with chronic condi-tions. In other words, the disease focus of the healthcare system does not and cannot manage the illness experience of the patient and fam-ily. This chapter builds on the previous chapter, “The Illness Experience.”

Classic work by Visotsky, Hamburg, Goss, and Lebovits (1961), in studying patients with polio, posed an initial question regarding adap-tation. The researchers asked their patients how it was possible to deal with this stressor, polio, and which coping behavior(s) assisted them with achieving a successful outcome. Decades later, researchers continue to ask the same question. Although progress in understanding certain components of adjustment has been made, many questions remain unanswered.

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Conceptualizing Psychosocial AdjustmentAn early description of adjustment (and a con-tinuing one) is the absence of a diagnosed psy-chological disorder, psychological symptoms, or negative mood in an individual. One example of a diagnosed condition is trauma- and stressor-related disorder, defined as the development of clinically significant emotional or behavioral symptoms in response to an identifiable stress or stressor (American Psychological Association, 2013). Even in Visotsky’s study with patients with polio in 1961, there was a movement to discount a psychological disorder being neces-sary in the definition of adjustment. The pres-ence of a psychological disorder is important, but other variables should also be considered in a definition.

Fife (1994) views the construction of mean-ing as a central aspect of adaptation to serious illness. The concept of meaning commonly refers to the relationship between individuals and their world, as well as to the individuals’ unique perceptions of their place within that world (p. 309). In the face of chronic disease, individuals are forced to redefine the meanings they have assumed to be true in their lives.

In a review article on psychological adjust-ment to chronic disease, deRidder, Geenen, Kuijer, and van Middendorp (2008) identified five elements of successful adjustment: (1) suc-cessful performance of adaptive tasks, (2) absence of psychological disorders, (3) presence of low negative affect and high positive affect, (4) ade-quate function status (e.g., going to work), and (5) satisfaction and well-being in various life domains (p. 264). Some of these elements are easily “measured.” For example, absence or pres-ence of a psychological disorder or returning to work can be verified with a degree of certainty. In contrast, other elements cannot be measured objectively.

There is little consistency in the litera-ture in defining adjustment. Each author/researcher defines the term differently based

on his or her own theoretical framework or on the specific outcomes that a study measures—for example, quality of life, self-concept, optimism, well-being, and so forth. Perhaps combining deRidder and colleagues’ work with some broad thoughts from Hoyt and Stanton (2012) provides a clearer picture of adjustment. These thoughts include the fol-lowing concepts:

•Adjustment to chronic illness is multidi-mensional and includes intrapersonal and interpersonal dimensions. Dimensions of adjustment are interrelated.

•Heterogeneity is the rule, not the exception.

•Adjustment involves both positive and negative dimensions.

Chronic Illness Affects Adjustment in Multiple Life Domains and RolesCaring for patients with chronic illness includes more than addressing the physical domain; it crosses interpersonal, cognitive, emotional, social, and behavioral domains. Psychosocial adjustment of the individual and family is a holistic process, in which each domain of life affects the others. Therefore, a change in one domain affects adjustment in another domain (Hoyt & Stanton, 2012). Cognitive adaptation might include self-reflection. Adaptation in the behavioral domain may include returning to work. Anxiety, in the emotional domain, may affect the ability to socialize in the interpersonal domain or impact blood pressure in the physi-cal domain. Emotional adaptation could be the absence of depression, and interpersonal and social adaptation may be the willingness to be “social” again and resume previous roles.

Heterogeneity Is the Rule, Not the ExceptionIf 20 women of the same age with the same stage of breast cancer and same prognosis were placed in a room, each individual would adjust,

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or not adjust, to her chronic condition differ-ently. Some women would be considered “well adjusted,” whereas others might be considered maladjusted. The remaining individuals would fall somewhere in the middle. A person’s indi-vidual determinants and uniqueness affect the ability of that individual to adjust to the ill-ness. Although adjustment commonalities exist among individuals with chronic illness, there is significant variability as well.

Adjustment can only be viewed from the perspective of the individual. Physical changes and function may or may not be pertinent to the individual. As the lived experience of ill-ness is different for each individual and family, so is psychosocial adjustment. The process and outcomes differ because of past experiences, age, gender, ethnicity, socioeconomic status, and other variables that science has yet to identify.

Adjustment Involves Positive and Negative DimensionsTypically, one thinks of psychosocial outcomes of chronic illness as being negative, as evidenced by distress, anxiety, worry, and other negative states. As stated previously, one definition of positive adjustment is the absence of a psycho-logical disorder. However, there may be another positive side of chronic illness.

It is not unusual to hear individuals with chronic illness make comments such as “Having this disease has been the best thing that ever happened to me—it made me wake up and see what was important.” There may be posi-tive aspects of chronic disease, but how patients come to view the disease in this way remains a mystery. Current research on benefit-finding, addressed later in this chapter, may be helpful in understanding this phenomenon.

Adjustment is a process that is neither lin-ear nor lockstep, but dynamic. The list of vari-ables that influence this process are numerous and varied. However, an obvious influence on adjustment is a negative change in health status. When such a change occurs, the lived experience

of the individual and family needs to incorpo-rate different data into their mental model of the illness, and progress made in previous steps toward adjustment may disappear.

This chapter provides an overview of psycho-social adjustment in individuals with chronic illness. Given that entire books have been devoted to coping, adaptation, and adjustment, the scope of this chapter is necessarily lim-ited. However, classic sources and models are included, along with interventions for health-care professionals.

Impact

Influences on Psychosocial AdjustmentThe impact of a chronic illness diagnosis, and subsequent treatment, on an individual and family is felt in all dimensions of their lives. However, it may not be the only factor influ-encing adjustment. That is, other life influ-ences may come into play that may or may not be related to the illness. There may be issues with a child or a grandchild, financial issues (which may or may not be related to the ill-ness), issues related to owning a business, and so forth. Many years ago, this author inter-viewed a middle-aged woman who had recently become blind. Options were being reviewed for vocational rehabilitation. During the visit, it became evident that the person was not focus-ing on what we were discussing, and finally she voiced her concerns. Her 16-year-old daughter was currently hospitalized in an inpatient psy-chiatric facility. As healthcare professionals, we often make the assumption that the patient’s illness is the focal point, but perhaps that is not always the case.

Most concepts addressed in the first section of this text deal with psychosocial adjustment. Whether it is powerlessness, uncertainty, inti-macy, or social isolation, all of these factors con-tribute to an individual and family’s psychosocial adjustment. However, another factor to consider

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in adjustment is the type of chronic illness and its prognosis. Is this chronic illness treatable, potentially fatal, curable, life-shortening, or disabling? The psychosocial adjustment in a patient newly diagnosed with type 2 diabetes is vastly different from that in a patient with Stage IV lung cancer. Unfortunately, researchers often group patients with a variety of chronic diseases at different stages of their illness into one sample, perhaps titled “chronic somatic dis-ease,” making it impossible to draw legitimate conclusions and make generalizations about their findings.

For an individual with chronic illness, this illness is now a life experience. In contrast, for family members, it will be remembered as a “past experience” at some point in their lives. This experience, with their own corresponding illness perceptions, becomes assimilated into these persons’ memory for future reference.

A systematic review of psychosocial factors and adjustment to chronic pain in persons with disabilities identified other variables impacting adjustment (Jensen, Moore, Bockow, Ehde, & Engel, 2011). Criteria for studies to be included in the review were as follows: (1) adults with physical disability who reported having pain, (2) one measure of a psychosocial predictor domain, and (3) one measure of pain or patient functioning.

The review included 29 studies with 5 dis-ability groups, including patients with spinal cord injury (SCI), muscular dystrophy (MD), multiple sclerosis (MS), acquired amputation, and cerebral palsy (CP). The findings indicated that measures of key psychosocial factors were all associated with important pain-related domains across the five different disability groups (p. 155). It was suggested by the results of this review that reasonable goals of treatment might include the following: (1) increase the use of coping strategies such as task persistence, accep-tance of disability, behavioral activities, exercise, ignoring pain, and coping self-statements; (2) increase the belief that the patient can control pain and its effects; and (3) help the patient

seek and obtain more general social support (not including support from others with pain). The findings provide support for a comprehen-sive biopsychosocial model for understanding chronic pain in adults with physical disabilities.

Researchers found a relationship among spirituality, psychosocial adjustment to illness, and health-related quality of life in 253 patients with Stage 4 or 5 chronic kidney disease and dialysis patients (Davison & Jhangri, 2013). Spirituality was measured by the Spiritual Well-Being Scale, which is designed to evalu-ate both religious and existential constructs of spirituality. Psychosocial adjustment, as measured by the Psychological Adjustment to Illness Scale (PAIS), was highly correlated with health-related quality of life (HRQoL); how-ever, existential well-being (EWB) remained a significant predictor of HRQoL. The authors concluded that spirituality is a unique factor in patients’ HRQoL, independent of their psycho-social adjustment (p. 170).

CopingHow does coping “fit” with psychosocial adjustment? Or is it a stand-alone entity? Richard Lazarus’s 1966 book, Psychological Stress and Coping, was an initial scholarly work that expanded how coping was conceptualized. Coping is a process that unfolds in the context of a situation or condition that is appraised as personally significant, and as taxing or exceeding the individual’s resources (Lazarus & Folkman, 1984). The coping process is ini-tiated in response to the individual’s appraisal that important goals have been harmed, lost, or threatened (Folkman & Moskowitz, 2004). What we have learned is that coping is a com-plex, multidimensional process that is sensitive both to the environment and its demands and resources, and to personality traits that influence the appraisal of stress—in this case, chronic illness—and the resources for coping (Folkman & Moskowitz, 2004). Coping is not a stand-alone concept or phenomenon, but rather is embedded in a complex, dynamic process that involves the


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person, the environment, and the relationship between them.

How coping is related specifically to adjust-ment has not been clearly described (Sharpe & Curran, 2006, p. 1154). Intellectually, it is believed that coping strategies contribute to adaptation and may be mediators, but most likely interact with other factors in contribut-ing to adaptation (Stanton & Revenson, 2007).

Two current studies are offered as examples of coping and adjustment. The relationship among attachment, coping, and self-regulation theory with adjustment in chronic illness has been studied less than other concepts. Bazzazian and Besharat (2012) explored the possibility that attachment theory could be part of a model of health as a basis for coping and self-regulation theory that would explain measurable indi-vidual differences in adjusting to a diagnosis of type 1 diabetes. The aim of the study was to develop a model of adjustment. Three hundred young adults with type 1 diabetes completed the Adult Attachment Inventory, the Brief Illness Perception Questionnaire, the task-oriented subscale of the Coping Inventory for Stressful Situations, and the well-being scale of the Mental Health Inventory. Three attachment styles were found to have a significant effect on task-oriented coping strategies. Notably, positive illness perceptions and more usage of task-oriented coping strategies predicted better adjustment to type 1 diabetes.

To understand relationships among coping style, locus of control, perceived illness intru-siveness, and disease severity, data were analyzed from 227 older veterans with either chronic obstructive pulmonary disease (COPD) or con-gestive heart failure (CHF). Regression analysis revealed that illness intrusiveness was associated with younger age and greater disease severity, less internal locus of control, and avoidant/emotion-focused coping. Avoidant/emotion-focused coping, but not active coping, mediated the relationship between illness severity and illness intrusiveness (Hundt et al., 2013). The authors suggest that psychological interventions

may reduce illness intrusiveness by targeting an avoidant/emotion-focused coping style and asso-ciated behaviors.

Benefit-FindingTraditionally, the negative sequelae that follow a diagnosis of a chronic and/or life-threatening illness have been the focus of healthcare provid-ers. However, current research suggests that many individuals may also experience positive life changes as a response to a serious illness. The concept of positive life changes is not new, but rather dates from Caplan’s (1964) work, which discussed the possibility that crises may present opportunities through constructive resolution of greater personality integration and the develop-ment of coping capabilities.

This positive life change has been called stress-related growth, benefit-finding, and post-traumatic growth. All three terms are used in the literature to refer to the positive life changes that people make while coping with negative life events (Park, Lechner, Antoni, & Stanton, 2009).

Positive life changes typically occur in the domains of relationships, self-concept, life phi-losophy, and coping skills (Park, 2009, p. 11). Park defines stress-related growth as the actual or veridical changes that people have made in relation to their experience with an identi-fied stressful or traumatic event (p. 12). Park acknowledges that different types of physical illness raise different challenges and, in fact, likely influence the levels and types of growth possible. Dimensions of illness that may be considered include symptom onset, presumed etiology, threat to life, life disruption, recovery trajectory, chronicity, permanence of change, and life context. Because illnesses differ greatly on these dimensions, generalizations about per-ceptions of growth in the context of illness may be uninformative and inaccurate (pp. 22–24).

Benefit-finding may be a predictor of concur-rent and future adjustment (Pakenham & Cox, 2009). In a study examining data from 388 patients with multiple sclerosis and 232 of their

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carers, at baseline and 12 months later, seven distinct benefit-finding dimensions emerged: compassion/empathy; spiritual growth; mind-fulness; family relations growth; lifestyle gains; personal growth; and new opportunities. The researchers suggested that these dimensions may be specific to MS or may be applicable with other chronic diseases.

A systematic review of the qualitative litera-ture on post-traumatic growth and life threat-ening illness revealed several common themes: reappraisal of life and priorities, trauma equals development of self, existential reevaluation, and a new awareness of the body (Hefferon, Grealy, & Mutrie, 2009).

Could positive life changes be a component of psychosocial adjustment? Or should they be considered psychosocial adjustment? One could assume that finding benefits from serious illness would contribute to better adjustment to the ill-ness, but research results on this topic are mixed (Carver, Lechner, & Antoni, 2009).

Next, we consider how we, as healthcare pro-fessionals, influence the process of psychosocial adjustment in patients and families.

InterventionsResearchers’ broad goals are to understand the process of adjustment, predict outcomes, and, by having predictive ability, modify interven-tions to meet the needs of patients. A framework that meets those goals is preferable for practice; however, a perfect model does not exist. What follows are sample models/frameworks gleaned from the literature. The differences in the frame-works presented here demonstrate the variance in understanding adjustment.

Frameworks for Understanding Adjustment in Chronic IllnessBiomedical ModelAlthough one might not consider the biomedi-cal model pertinent when discussing psycho-social adjustment, this model is often used in

the acute phase of chronic illness. The medical model provides a framework for treating the pathology of illness. In this model, the patient is a complex set of anatomic parts and interrelated body systems. Anatomic, physiologic, and/or biochemical failures translate into disease, thus promoting a disease-oriented approach to care. Pathophysiology, pharmacotherapy, and tech-nology are emphasized and become prominent when intervening in illness and disease, whether acute or chronic. The biomedical paradigm tends to medicalize all human conditions, suggesting that 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, while diminishing social and cultural explanation of disease (Mirowsky & Ross, 2002). Physical com-plaints and signs or symptoms of disease become the hallmarks of interaction and reaction in the healthcare arena. A biological model may cause healthcare professionals to pay too little atten-tion to the patient and his or her social context (Suls, Luger, & Martin, 2010, p. 16).

In this model, the relationship between the healthcare professional and the patient with chronic illness is one of objectivity, biological pathology, diagnosis, and signs and symptoms, all of which require medical interventions. Healthcare professionals tend to shield them-selves from the human aspects of chronic illness, while their technical skill sets, techniques, and procedures become the focus of interaction with the patient (Freeth, 2007). Power and expertise are held exclusively by the healthcare system. The individual with chronic illness may become disempowered to engage in healthcare decisions and rely solely on the healthcare professional.

The biomedical model is insufficient in pro-viding holistic health care to individuals and families with chronic illness (Waisbond, 2007), as it fails to acknowledge the illness experience. Specifically, this model does not acknowledge the person with the chronic condition, who holds knowledge and expertise about the factors


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that influence his or 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 prescriptions for her hypertension. Although she has adequate funds, Mrs. Jones’s stress and worry exacerbate her hypertension. At her doctor’s appointment, Mrs. Jones does not inform her physician that the probable cause of her elevated blood pressure is related to her stress about money. The physi-cian responds to Mrs. Jones’s hypertension with a change of medication to manage her symp-toms. This kind of quantification of all signs and symptoms of disease fails to address the total ill-ness experience of the individual.

Despite the limitations of the biomedical model in adjustment, it is the foundation of evidence-based practice and provides the gold standard for treatment and interven-tion. This model provides measurable goals for treatment and patient outcomes relative to morbidity and mortality.

Chronic Care ModelThe chronic care model (CCM) first appeared in the literature in 1998 (Wagner, 1998) and was later refined by Wagner and colleagues (2001). Subsequent research into interventions with chronic illness has resulted in best practices and a national program for improving chronic ill-ness care (Robert Wood Johnson Foundation, 2006–2011).

A key component of the CCM is patient self-management to address deficiencies in the medi-cal model of the healthcare system in managing chronic conditions. Within this model, six major elements interact to produce high-quality care and evidence-based interventions for per-sons with chronic conditions in health systems at the community, organization, practice, and individual levels: (1) the healthcare system or healthcare organization; (2) clinical informa-tion systems; (3) decision support; (4) delivery system design; (5) self-management support; and (6) community, including organizations

and resources for patients with chronic illness (Wagner et al., 2001).

The CCM has been widely adopted as an approach to ambulatory care. It has guided national quality improvement initiatives and been an integral part of patient-centered medi-cal home models (Coleman, Austin, Brach, & Wagner, 2009). However, this model focuses on the mortality and morbidity of the patient and family, not the illness experience. In other words, HgbA1c levels, blood pressure readings, medication adherence, appropriate results from pulmonary function tests, and so forth are objec-tive measures, thereby identifying the CCM as a biomedical model.

Two recent systematic reviews of the CCM and chronic illness further describe this model’s use and impact. In a review focusing on indi-viduals living with HIV, two of the components of the model, decision support (DS) and clini-cal information systems (CIS), were assessed for their effectiveness in improving care by chang-ing healthcare professional behavior. Overall, DS and CIS interventions may modestly improve care for individuals living with HIV; nevertheless, the researchers found that the interventions have a greater impact on process measures than on patient outcome measures (Pasricha et al. 2012, p. 127).

Other work with the CCM has involved individuals with diabetes who were being treated in primary care settings (Stellefson, Dipnarine, & Stopka, 2013). This systematic review, unfortunately, identified only nine ran-domized clinical trials (RCTs). The review con-cluded that the CCM is effective in improving the health of individuals with diabetes who receive care in a primary care setting. Positive clinical indicators, such as improved HgbA1c levels, have been cited as indicators of the model’s success. However, process outcomes (e.g., self-efficacy for disease management and clinical decision making, perceived social sup-port, knowledge of diabetes self-care practices) were not addressed in the studies included in this review.

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Common Sense Model of Self-RegulationThe common sense model of self-regulation (CSM) (Leventhal et al., 2012), based on bio-medical and cognitive models, has become the preferred model in psychological adaptation studies. This model proposes that the patient’s illness beliefs and representations of that illness influence adaptation to the illness and health outcomes. According to the CSM, patients develop cognitive and emotional representations of their condition to “make sense” or find mean-ing in the illness. Leventhal and colleagues iden-tify five dimensions that represent a patient’s view of his or her illness:

• Identity of the illness: Connecting the symptoms with the illness and having an understanding of the illness.

•Timeline: Duration and progression of the illness.

•Causes: Perceived reason for the illness.•Consequences: What will be the physical,

psychosocial, and economic impact of the illness?

•Controllability: Can this disease be con-trolled? Cured?

After identification of these dimensions, Leventhal and colleagues posit that the informa-tion gathered from these dimensions becomes the patient’s illness perceptions and these, in turn, guide coping and ultimately affect out-comes through the choice of actions arising from these illness perceptions (Benyamini, 2011, p. 293). There is significant evidence that an adap-tive perception of a 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. Examples of its application follow:

•The importance of illness perceptions in end-stage renal disease: Associations with psychosocial and clinical outcomes (Chilcot, 2012).

•Explanation of outcomes after mild trau-matic brain injury: The contribution of injury belief and Leventhal’s common sense model (Snell, Hay-Smith, Surgenor, & Siegert, 2013).

•Predicting self-care behaviours of patients with type 2 diabetes: The importance of beliefs about behavior, not just beliefs about illness (French, Wade, & Farmer, 2013).

•Can the common sense model predict adherence in chronically ill patients: A meta-analysis (Brandes & Mullan, 2013).

•Using the common sense model of self-regulation to review the effects of self-monitoring of blood glucose on glycemic control for non-insulin treated adults with type 2 diabetes (Breland, McAndrew, Burns, Leventhal, & Leventhal, 2013).

Biopsychosocial ModelEngle (1977, 1980) conceived a model that integrates biological, psychological, and social processes in physical illness and health, medi-cal diagnosis, medical treatment, and recovery (Suls et al., 2010, p. 18). This model is not dominated by a single domain, but instead uses a multilevel approach to diagnose, explain, and treat any medical issue. Engle’s goal was to understand the full complement of influences at multiple levels of analysis. The interaction of the domains means that a change in one domain results in changes in other domains. Further, it suggests that any interventions involving all of the domains will fare better than a treatment grounded in one domain (Suls et al., 2010). Challenges exist for interdisciplinary research, however, and research that acknowledges all domains continues to be difficult (Suls, Krantz, & Williams, 2013).

Examples of Interventions to Assist and Support the PatientThe literature provides an abundance of descrip-tive studies defining and measuring adaptation


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and coping, but few interventional studies exist. It appears that coping and adjustment can, in some way, be measured by specific concepts (e.g. well-being, hope, lack of a psychological disorder), but we are unable to conceptualize those findings into clear interventions or ways healthcare professionals can assist patients with psychosocial adjustment. The distinct attributes of each individual and his or her family make generalizations of interventions difficult.

Self-ManagementSelf-management has long been used as an inter-vention in a number of the concepts that this text addresses, such as uncertainty, powerless-ness, adherence, and quality of life. By manag-ing their own care, patients feel that they have more control over their chronic illness and, therefore, often experience a better quality of life. Due to the importance of self-management, an entire chapter in this text has been devoted to the subject. Thus, the present chapter will address this concept only briefly.

Swendeman, Ingram, and Rotheram-Borus (2009) identify three broad categories in chronic disease self-management: physical health, psychological functioning, and social relationships. Elements related to physical health are knowledge and behavior to main-tain health status, whereas elements related to psychological functioning include self-efficacy and empowerment as well as emotional status and shifts in identity. Social relationship ele-ments relate to collaborative partnerships with healthcare professionals, family members, and social support.

Self-management programs based on enhanc-ing self-efficacy have proved highly successful in reducing symptoms and encouraging behavior change in many chronic illnesses. Self-efficacy may be considered a personal context variable; thus, it may be a determinant in the appraisal of the illness, the coping strategies used by the individual, and the outcome (physical, emo-tional, and social adjustment). Although self-efficacy is specific to the task and situation,

programs that encourage development of self-efficacy can influence adaptation.

To accomplish self-management, individuals with chronic illness need to apply the follow-ing skills: problem solving, decision making, resource utilization, forming partnerships with healthcare professionals, and taking action (Lorig & Holman, 2003). McCorkle and col-leagues (2011) present a literature review of the scientific advances in self-management in cancer in the treatment, post-treatment, and end-of-life phases of the cancer continuum. Their review uses terms such as “illness self-management,” “self-care,” “psycho-educational interventions,” and “cognitive-behavioral interventions.” Oftentimes studies using cognitive-behavioral interventions are not included in such reviews. For example, in this chapter, this author has chosen to separate out psychologically based strategies.

McCorkle and colleagues identified 16 interventional studies that met their criteria for inclusion in the review. Studies were clus-tered by interventions during the treatment, post-treatment, and end-of-life phases, with the majority of the studies occurring during treatment. Programs included educational pro-grams, nurse coaching, uncertainty manage-ment, monitoring, counseling, skills training, information, and general knowledge about the disease and treatment. There was no standard-ized “intervention” for self-management. What became apparent was that the 16 studies were time limited; specifically, treatment interven-tions ranged from 4 to 20 weeks long, post-treatment interventions were 8 to 10 weeks long, and interventions in the end-of-life studies were offered until death. The treatment studies demonstrated decreased psychosocial concerns, less distress, better health-related quality of life, and better psychological adjustment (McCorkle et al., 2011); however, only short-term outcomes were measured, not long-term outcomes.

Lastly, self-management programs have often been coordinated by lay leaders. A Cochrane review identified 17 randomized clinical trials

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(RCTs) involving 7,442 participants. Although the interventions shared similar structures and components, the studies demonstrated heteroge-neity in conditions studied, outcomes collected, and effects (Foster, Taylor, Eldridge, Ramsay, & Griffiths, 2007). Foster and colleagues concluded that such programs may lead to small, short-term improvements in participants’ self-efficacy, self-rated health, cognitive symptom management, and frequency of aerobic exercise. Nevertheless, there is no evidence to suggest that such pro-grams improve psychological health, symptoms, or health-related quality of life, or that they significantly alter healthcare use.

Motivational InterviewingWhen Miller and Rollnick (1991) originally developed motivational interviewing (MI), their intent was that counselors who worked with clients with drug and alcohol problems would benefit the most from application of this inter-vention. After the success of their 1991 book, it became apparent that MI could be used with others who struggle with ambivalence about change. Rollnick, Miller, and Butler (2008) define motivational interviewing as a refined form of the familiar process of guiding (p. ix.).

Rollnick et al. (2008) further describe MI:

MI is not a technique for tricking people into doing what they do not want to do. Rather, it is a skillful clinical style for eliciting from patients their own good motivations for making behavior changes in the interest of their health. It involves guiding more than directing, danc-ing rather than wrestling, listening at least as much as telling. The overall “spirit” has been described as collaborative, evocative, and hon-oring of patient autonomy. (Rollnick et al., 2008, p. 6)

Dart (2011) describes the four main prin-ciples of MI as follows: (1) express empathy, (2) support self-efficacy, (3) develop discrep-ancy, and (4) roll with resistance. Therapeutic communication is important in each and every

interaction with the patient. MI is a form of communication that allows patient involve-ment, respect for each patient as an individual with his or her own agenda, and acceptance of a patient’s choices (p. 13).

A search of the Cochrane Library of Systematic Reviews does not reveal a review dealing with motivational interviewing and chronic illness. A total of 11 proposed or completed studies about chronic illness and motivational interviewing were listed in the Cochrane Central Register of Controlled Trials from 2005 to the pres-ent. Results from the completed studies were mixed. The Health Aging Project (HAP) tested nurse coaching as an intervention to support healthy behavior change in older adults. Nurses were trained in motivational interviewing. The coaching took place on the phone and via email to discuss health behaviors. The intervention group had significantly less illness intrusive-ness and health distress than the control group at 6 months, but it is not known whether these outcomes resulted from actual behavior change (Bennett et al., 2005).

Sixty older adults with chronic heart failure were randomly assigned to an interview group (the MI group) or a control group to examine whether a physical activity intervention based on motivational interviewing would improve quality of life in these patients. Over the 5 months of the study, there was a general trend toward improvements in self-efficacy and motivation scores (Brodie, Inoue, & Shaw, 2008).

Solomon and colleagues (2012) examined the effectiveness of a telephone-based counseling program based on motivational interviewing to improve adherence to a medication regimen for osteoporosis. The study, which had a sample size of 2,087, did not reveal any statistically signifi-cant improvement in the experimental group in regard to adherence to their medication regime.

Peer and Social SupportAs common as self-help and self-support groups are for those with chronic illness, one would


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expect the research literature to be clear as to their value. Unfortunately, that is not the case. Anecdotal articles exist, but there are few research-based articles. In addition, research commonly looks at support groups for a short period—6, 10, 12, and 15 weeks—whereas a chronic illness could be present for 30, 40, or 50 years.

Stanton and Revenson (2007) suggest that healthcare professionals can improve the inter-personal context of patients by teaching them to develop and maintain social ties, recognize and accept others’ help and emotional encourage-ment, or change their appraisals of the support they are receiving. Psychosocial interventions should be directed toward individual-level change and may include cognitive-behavioral, educational, and interpersonal support compo-nents. Support groups may provide emotional support as well as an educational focus. The edu-cation is expected to strengthen the individual’s sense of control over the disease, reduce feelings of confusion, and enhance decision making (p. 221). The peer support provides emotional sup-port, thereby enhancing self-esteem, minimiz-ing aloneness, and reinforcing coping strategies.

Dibb and Yardley (2006) investigated the role that social comparison might play in adap-tation using a self-help group as the context. Social comparison proposes that individuals with similar problems compare each other’s health statuses. Often this comparison occurs within self-help groups, which are composed of individuals with similar health issues. It has been suggested that downward compari-son, when a comparison is made with a person who is doing less well, initiates positive affect by increasing self-esteem. Conversely, upward comparison with a person doing better may result in hope (Dibb & Yardley, 2006, p. 1603). Findings from this study, which involved 301 clients with Ménière’s disease, demonstrated that the strongest and most consistent effect of social comparison was that positively inter-preted downward comparisons were associated

with better functional and goal-directed quality of life (p. 1610).

According to the social-cognitive processing model, the expression of one’s thoughts and feel-ings about cancer—that is, “social sharing”—in a supportive way may facilitate psychological adjustment (Boinon et al., 2014). Studies have emphasized the links between positive social support and patients’ psychological adjustment, but have devoted less attention to the effects of negative support. In Boinon and colleagues’ study, women with breast cancer were surveyed at two points in time, after their surgery and after their adjuvant therapy. Results were con-sistent with this social environment–oriented approach and demonstrated that repressing one’s desire to talk about the experience of the disease after surgery is associated with an increase in psychological distress at the end of treatment. However, there was no beneficial effect of social sharing concerning the disease or of perceived emotional support on psychological adjustment. The researchers concluded that healthcare pro-fessionals should develop specific interventions to address the negative reactions of the social network and the way these are perceived and processed by patients. There should be encour-agement to strengthen links with “well-meaning” family members and friends and focus on main-taining the feeling of social integration (Boinon et al., 2014).

Parry and Watt-Watson (2010) conducted a systematic review of peer support interven-tions for individuals with heart disease. Peer support—a specific type of social support that includes appraisal as well as informational and emotional support—has been shown to be an effective intervention for individuals with other chronic illnesses. Only six RCTs, with a total of 1,452 participants, could be identified for the 2010 review. The results suggested that peer support may improve self-efficacy in individu-als with heart disease and post-coronary artery bypass graft (CABG) surgery, and may have a beneficial effect on the health and well-being of

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individuals with heart disease who are recover-ing from a myocardial infarction (MI) and are post-CABG surgery. However, the authors note that there was little standardization of the train-ing of the peer support persons or standardiza-tion of the peer support intervention, and interventions and outcomes were not theoreti-cally or conceptually justified.

The role of social support in diabetes man-agement is not well understood. Strom and Egede (2012) suggest that social support is a multifaceted experience that involves volunteer associations and formal and informal relation-ships with others. Social support is a perception that one is accepted, cared for, and provided with assistance from certain individuals or a specific group, or the realization of actual sup-port received from another (p. 770). Strom and Egede’s review concluded that higher levels of social support influence more positive outcomes in participants; however, these authors note that because most of the studies reviewed were cross-sectional studies, causality cannot be inferred concerning social support and its impact on dia-betes management (p. 780).

In addition to face-to-face social/peer sup-port groups, chronic disease social groups com-monly appear on Facebook and Twitter. One group of researchers looked at both Facebook and Twitter to characterize groups concerning colorectal cancer, breast cancer, and diabetes (De la Torre-Diez, Diaz-Pernas, & Anton-Rodriguez, 2012). There were 216 breast can-cer groups, 171 colorectal cancer groups, and 527 diabetes groups on the two platforms. Although all disease groups addressed pre-vention and research, the social value of the groups to patients with chronic disease was most significant.

Psychologically Based StrategiesPakenham (2007) highlights the need for practi-tioners to facilitate patients’ cognitive processing of the implications and meaning of their illness. A blend of cognitive-restructuring strategies, patient-centered approaches, and existential

approaches may be helpful to the patient and family.

Cognitive-behavioral strategies can be used to teach coping skills to patients with chronic illness (Folkman & Moskowitz, 2004). Sharpe and Curran (2006) have also encouraged the use of cognitive-behavioral therapy (CBT). Such programs include strategies with the aim of facilitating a realistic, but optimistic atti-tude toward illness and/or facilitating more adaptive coping strategies. Programs typi-cally include education about the illness, goal setting and pacing, relaxation strategies and attention diversion skills, cognitive therapy, communication skills, and management of high-risk situations (such as exacerbations of the illness).

McAndrew and colleagues (2008) developed two interventions based on the common sense model of self-regulation. The first intervention is a bottom-up concrete/behavioral approach that has been used with patients with diabetes. The approach begins with a focus on behavior to create an overarching view of diabetes as a chronic condition that requires constant self-regulation. The second intervention is conceived as a top-down or abstract/cognitive strategy that provides patients with asthma with a conceptual framework that focuses on asthma being pres-ent even when it is asymptomatic (p. 197). The authors suggest that patients may benefit from starting with one strategy or the other. However, it is expected that successful interventions will combine both approaches.

Three Cochrane Collaboration reviews are relevant to patients with chronic illness and the use of psychologically based strategies. Depression is common in patients with incur-able cancer. When studies that used psycho-therapy in patients with concomitant incurable cancer and depression were reviewed, the evi-dence supported psychotherapy as being useful in treating depressive states in patients with advanced cancer. However, there is no evi-dence to support the effectiveness of psycho-therapy in patients with clinically diagnosed


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depression (Akechi, Okuyama, Onishi, Morita, & Furukawa, 2008).

Nineteen studies comparing psychosocial interventions versus usual care in a sample of 3,204 men with prostate cancer were reviewed. The review demonstrated that psychosocial interventions may have small, short-term ben-eficial effects on certain domains of well-being, such as the physical component of general health-related quality of life and cancer-related quality of life, when compared with usual care. However, the review failed to demonstrate a statistically significant effect on other domains, such as symptom-related quality of life, self-efficacy, uncertainty, distress, and depression (Parahoo et al., 2013).

Lastly, a review of psychological interven-tions for women with metastatic breast cancer and their effect on psychosocial and survival outcomes was conducted. Psychologically based interventions appear to be effective in improving survival at 12 months, but not at longer-term follow-up. These interventions are effective in reducing psychological symptoms only in some women with metastatic breast cancer (Mustafa, Carson-Stevens, Gillespie, & Edwards, 2013). The reviewers caution that there is a relative lack of data in this field, and that a number of the RCTs reviewed had reporting or method-ological weaknesses.

Complementary and Alternative TherapyExamples of different techniques that may be used in patients with chronic illness are included in the “Complementary and Alternative Therapies” chapter.

TechnologyPerhaps the most well-known computer interven-tion involving women with chronic illness is the Women to Women (WTW) project developed by Clarann Weinert. This project was launched in 1995 and included three phases over a period of years. The last phase of the project was a two-group study design with 309 middle-aged, rural

women with chronic conditions. Women were randomized into either the experimental group, which received the computer-based intervention, or the control group, which did not receive the intervention. Data were collected at baseline, at the end of the intervention, and 6 months follow-ing the project. Positive and negative psychosocial variables of interest to the researchers were social support, self-esteem, acceptance of illness, stress, depression, and loneliness (Weinert, Cudney, Comstock, & Bansal, 2011).

The 11-week computer intervention gave women 24-hour access to a peer-led virtual sup-port group as well as a series of self-study health teaching units on web skills and the five skills of self-management (problem solving, decision making, resource utilization, forming partner-ships with healthcare professionals, and taking action). The skills of self-management were derived from Lorig and Holman’s work (2003). At all three data collection points, the number of women participating was 250, indicating an 80.9% retention rate. Five of the six psycho-social outcomes were statistically significant at 6 months. The experimental group had higher scores on self-esteem and acceptance of illness and lower scores on depression, loneliness, and stress than did the control group. Although shortly after the intervention higher scores in social support were noted, that result was not maintained at 6 months. Although this com-puter intervention was successful, the authors caution that the results represent just one piece of the complex adaptation process as experi-enced by rural women living with chronic con-ditions (Weinert et al., 2011, p. 89).

As early as 2005, the Cochrane Collaboration published a review of interactive health com-munication applications (IHCA) for people with chronic disease. IHCAs were defined as computer-based, usually web-based, informa-tion packages for patients that combine health information with at least one of the following: social support, decision support, or behavior change support. To assess the effects of IHCAs for individuals with chronic disease, 24 RCTs

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with 3,739 participants were included in the review. The IHCAs appeared to have largely positive effects on users, such as users becom-ing more knowledgeable and feeling better socially supported, and may have improved users’ behavioral and clinical outcomes com-pared to nonusers (Murray, Burns, See Tai, Lai, & Nazareth, 2005).

In 2013, the Cochrane Collaboration pub-lished two intervention reviews regarding tech-nology and chronic disease. Pak et al. (2013) assessed the effects on health status and health-related quality of life of computer-based diabe-tes self-management interventions for adults with type 2 diabetes. The 16 RCTs included in this review demonstrated a wide range of interventions, including clinic-based interven-tions, Internet-based interventions that could be used from home, and mobile phone-based interventions. The researchers concluded that computer-based self-management interven-tions to manage type 2 diabetes appear to have a small beneficial effect on blood glucose, and that effect was larger in the mobile phone subgroup. In contrast, no evidence supported benefits in other biological outcomes or any cognitive, behavioral, or emotional outcomes.

A review of smartphone and tablet self-management applications for asthma was also conducted. Marcano Belisario, Huckvale, Greenfield, Car, and Gunn (2013) identified only two RCTs, with a total of 408 participants, dealing with this topic. Due to the small num-ber, a narrative synthesis approach was used with the data. Currently, there is not enough evidence to recommend the use of smartphone and tablet computer applications for the deliv-ery of asthma self-management programs.

Other Interventions to Assist and Support the PatientHope can be a psychosocial resource for older adults who are dealing with a chronic illness. A meta-analysis of qualitative research on the hope experience from 1980 to 2010 concluded

that older adults may experience hope differ-ently than younger adults. Resources for hope are both internal and external. Finding mean-ing and positive reappraisal are important to help older adults maintain hope (Duggleby et al., 2012, p. 1211).

The Healthy People documents have fueled interest in health promotion and wellness. Interestingly, an increasing number of studies have focused on the use of wellness interven-tions in chronic illness. Unfortunately, a con-sensus definition of a wellness intervention does not exist, as each researcher has used different actions as wellness interventions. Stuifbergen and colleagues (2010) conducted a review of studies that included patients with chronic illness and wellness interventions; 190 stud-ies from 1990 to 2007 met the criteria for inclusion in the review. Most of these studies explored a wellness intervention with a sam-ple of individuals with a single chronic illness (e.g., stroke, cancer, heart failure). Of the 190 studies, 89.5% reported positive effects from their wellness intervention, although the inter-vention and measurement of outcomes varied greatly (p. 133). Interventions ranged from 1 week of health education and coaching for older adults with cardiac conditions to 6 months of swimming for persons with asthma. Similarly, the outcome measurements varied from using standardized tools like the SF-36 or biological measures to self-reports of mobil-ity, ADLs, and other outcomes. Although the immediate positive effects of interventions were encouraging, there was little, if any, follow-up with patients at a later date (p. 139).

Fife (1994) views the construction of mean-ing as a central aspect of adaptation to serious illness. Patients and families are challenged by a diagnosis of chronic illness and wonder what the “meaning of all of this” is. Searching for meaning has been a component of sev-eral psychological adaptation theories (Lee, Cohen, Edgar, Laizner, & Gagnon, 2006). Lee and colleagues designed a RCT using a


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meaning-making coping process as the inter-vention. Seventy-four patients with breast and colorectal cancer were included in the sample. The experimental group received up to four ses-sions that explored the meaning of their emo-tional responses and their cognitive appraisal of the experience. Each face-to-face session of up to 120 minutes took place at either the patient’s home or the clinic (the patient’s choice as to location). The meaning-making intervention involved tasks that patients needed to complete during the sessions: (1) acknowledge the pres-ent, (2) contemplate the past, and (3) commit to the present, for the future. Outcome mea-sures were based on the Rosenberg Self-Esteem Scale, the Life Orientation Test—Revised, and the Generalized Self-Efficacy Scale. Statistically significant improvements in self-esteem, opti-mism, and self-efficacy were found for the experimental group as compared to the control group.

OutcomesThe obvious outcome for an individual with chronic illness would be psychosocial adjust-ment, with each patient and family appro-priately “adjusting” to the roller coaster of challenges that occur on a regular basis. But how should psychosocial adjustment be mea-sured, and might it look different for each individual and family? And again, what about individuals with a terminal chronic ill-ness? Can those individuals experience psy-chosocial adjustment? There are no answers, just questions.

Has our family adjusted to the fact that my husband, the father of our three children, a grandfather to 12, a brother and a son, has a cancer that is not going to be cured? It’s now down to a clinical trial or hospice. Have we “adjusted” to that fact or is adjustment even possible? We are all physically and emotionally exhausted. We just “are,” and that is all. The end is near and it’s not what any of us thought

could happen 18 months ago. Where did those 18 months go? Did we try to “live” during that time, or were we always responding to the next emergency or complication? I look back at my journal and note the many ups and downs, the days of despair, the days of hope. Regrets, yes; “what ifs,” always; “should haves,” of course. The life of a patient and family with chronic illness and now that illness is ending with death. I didn’t know it was like this.

—Jenny

Evidence-Based Practice Box

Women with chronic illness in rural parts of the western United States confront multiple chal-lenges, ranging from access to health care to social support. Weinert, Cudney, and Spring designed and implemented a three-phase, computer-based intervention to provide support and health infor-mation to middle-aged women with chronic ill-ness. These women all lived in rural areas of the intermountain West. Women to Women (WTW) Phase One included 308 women who participated in either an intervention group or a control group. The intervention group experienced gains in their social support as measured by the Personal Resource Questionnaire-85.

In Phase Two, the overall goal for a revised and more sophisticated telehealth intervention was to enhance the potential for rural chronically ill women to better adapt to their chronic illnesses. During Phase Two, 233 women participated in one of three groups: intense intervention, less-intense intervention, or control. The WTW proj-ect targeted psychosocial concepts, such as social support, self-efficacy, self-esteem, empowerment, depression, loneliness, and stress, as indicators of psychosocial adaptation. The intervention had a positive influence on the chosen indicators of adap-tation to chronic illness.

Phase Three of the project design includes two groups: a computer intervention group and

(continues)

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Case study 3-1Alice is a 39-year-old mother of two who was recently diagnosed with Stage III breast cancer. She has been married for 15 years to her high school sweetheart. During a breast self-examination in the shower, Alice discovered the lump. Her lumpectomy is complete and she begins chemotherapy next week. She is angry that she has cancer and seems to be taking it out on everyone involved with her care, as well as her husband and children. You are her chemo nurse in the oncology office.

discussion Questions

1. The goal of psychosocial adjustment at this point in Alice’s care does not seem possible. How would you develop trust and a relationship with her?

2. Which small steps could you take that will diffuse Alice’s anger and deflect it from her family?3. How would you assess Alice’s psychosocial needs?

Case study 3-2Bob, age 59, was diagnosed with multiple sclerosis when he was 35. Until recently, he was able to ambulate with a cane. Following his last exacerbation, during which he was hospitalized briefly, it appears that he will need a walker instead. This has been a real blow to Bob’s pride and he rarely uses the walker, preferring to use his cane instead. However, with his cane, he is a definite fall risk. He runs a small business and wonders what his employees and customers will think.

discussion Questions

1. This is another change, and a downward one, for Bob. He was comfortable with the cane and appeared to be psychosocially adjusted, as evidenced by his optimism, well-being, and self-concept. Now it appears that his adjustment has been derailed. As his usual nurse in the MS clinic at a medical center, how can you intervene to assist Bob?

2. Which framework of practice would be most appropriate to use in working with Bob?

a control group. Eight cohorts of 40 women (20 intervention and 20 control) are participat-ing. The intervention group participates in an 11-week, computer-based intervention in which they have access 24 hours/day to self-study health teaching units, peer-led virtual support groups, and the Internet. Adaptation variables are measured at baseline, in week 12, and in week 24.

From their work, the authors have created a WTW conceptual model for adaptation to chronic illness. The central theme of the model is that the process of psychosocial adaptation to chronic ill-ness is key to developing self-management skills and achieving an acceptable quality of life.

Source: Weinart, C., Cudney, S., & Spring, A. (2008). Evolution of a conceptual model for adaptation to chronic illness. Journal of Nursing Scholarship,

40(4), 364–372


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Akechi, T., Okuyama, T., Onishi, J., Morita, T., & Furukawa, T. A. (2008). Psychotherapy for depres-sion among incurable cancer patients. Cochrane Database of Systematic Reviews 2008, 2, CD005537. doi: 10.1002/14651858.CD005537.pub2

American Psychological Association. (2013). Diagnostic and statistical manual of mental disorders V (DSM-V). New York, NY: Author.

Bazzazian, S., & Besharat, M. A. (2012). An explana-tory model of adjustment to type 1 diabetes based on attachment, coping, and self-regulation theories. Psychology, Health & Medicine, 17(1), 47–58. http://dx.doi.org/10.1080/13548506.2011.575168

Bennett, J. A., Perrin, N. A., Hanson, G., Bennett, D., Gaynor, W., Flaherty-Robb, M., … Potempa, K. (2005). Health aging demonstration project: Nurse coaching for behavior change in older adults. Research in Nursing and Health, 28(3), 187–197.

Benyamini, Y. (2011). Health and illness perceptions. In H. S. Friedman (Ed.), The Oxford handbook of health psychology (pp. 280–293). Oxford, UK: Oxford University Press.

Boinon, D., Sultan, S., Charles, C., Stulz, A., Guillemeau, C., Delaloge, S., & Dauchy, S. (2014). Changes in psychological adjustment over the course of treatment for breast cancer: The predictive role of social sharing and social support. Psycho-Oncology, 23(3), 291-8. doi: 10.1002/pon.3420

Brandes, K., & Mullan, B. (2013). Can the common-sense model predict adherence in critically ill patients:

A meta-analysis. Health Psychology Review. doi: 10.1080/17437199.2013.820986

Breland, J., McAndrew, L. M., Burns, E., Leventhal, E., & Leventhal, H. (2013). Using the common sense model of self-regulation to review the effects of self-monitoring of blood glucose on glycemic control for non-insulin treated adults with type 2 diabetes. Diabetes Educator, 39(4), 541–559. doi: 10.1177/0145721713400079

Brodie, D. A., Inoue, A., & Shaw, D. G. (2008). Motivational interviewing to change quality of life for people with chronic heart failure: A randomized controlled trial. International Journal of Nursing Studies, 45(4), 489–500.

Caplan, G. (1964). Principles of preventive psychiatry. New York, NY: Basic Books.

Carver, C. S., Lechner, S. C., & Antoni, M. H. (2009). Challenges in studying positive change after adversity: Illustrations from research on breast cancer. In C. L. Park, S. C. Lechner, M. H. Antoni, & A. L. Stanton (Eds.), Medical illness and positive life change: Can crisis lead to personal transformation (pp. 51–62). Washington, DC: American Psychological Association.

Chilcot, J. (2012). The importance of illness perception in end-stage renal disease: Associations with psychoso-cial and clinical outcomes. Seminars in Dialysis, 25(1), 59–64.

Coleman, K., Austin, B. T., Brach, C., & Wagner, E. H. (2009) Evidence on the chronic care model in the new millennium. Health Affairs, 28(1), 75–85.

study Questions

1. Why is adjustment to chronic illness important to the patient and family with chronic illness? Why is it important to the healthcare professional?

2. Describe how different personal resources can affect adjustment.3. Compare and contrast the key concepts of the frameworks discussed in this chapter. Although

these models have been developed by psychologists, what could nursing bring to these models that could be applied to patients and their families?

4. Describe, from your perspective, the role of social support in adjustment, whether it be “per-ceived” social support or “real” social support.

5. Develop a generic teaching plan that addresses psychosocial adjustment to chronic illness. What are key points that could then be individualized to each patient?

References

References 59

9781284057911_CH03_PASS02.indd 59 15/09/14 4:58 PM


Dart, M. (2011). Motivational interviewing in nursing practice: Empowering the patient. Sudbury, MA: Jones and Bartlett.

Davison, S. N., & Jhangri, G. S. (2013). The relationship between spirituality, psychosocial adjustment to illness, and health-related quality of life in patients with advanced kidney disease. Journal of Pain and Symptom Management, 45(2), 170–178. http://dx.doi .org/10.1016/j.jpainsymman.2012.02.019

De la Torre-Diez, I., Diaz-Pernas, F. J., & Anton-Rodriguez, M. (2012). A content analysis of chronic diseases social groups on Facebook and Twitter. Telemedicine and e-Health, 18(6), 404–408.

deRidder, D., Geenen, R., Kuijer, R., & van Middendorp, H. (2008). Psychological adjustment to chronic disease. Lancet, 372, 246–254.

Dibb, B., & Yardley, L. (2006). How does social compari-son within a self-help group influence adjustment to chronic illness? A longitudinal study. Social Science & Medicine, 63, 1602–1613.

Duggleby, W., Hicks, D., Nekolaichuk, C., Holstslander, L., Williams, A., Chambers, T., & Eby, J. (2012). Hope, older adults, and chronic illness: A metasyn-thesis of qualitative research. Journal of Advanced Nursing, 68(6), 1211–1223. doi: 10.1111/j.1365-2648.2011.05919.x

Engle, G. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129–136.

Engle, G. (1980). The clinical application of the biopsy-chosocial model. American Journal of Psychiatry, 137, 535–544.

Fife, B. (1994). The conceptualization of meaning in illness. Social Science & Medicine, 38(2), 309–316.

Folkman, S., & Moskowitz, J. T. (2004). Coping: Pitfalls and promise. Annual Review of Psychology, 55, 45–774.

Foster, G., Taylor, S. J. C., Eldridge, S., Ramsay, J., & Griffiths C. J. (2007). Self-management programmes by lay leaders for people with chronic conditions. Cochrane Database of Systematic Reviews 2007, 4, CD005108. doi: 10.1002/14651858.CD005108.pub2

Freeth, R. (2007). Working within the medical model. Healthcare Counseling & Psychotherapy Journal, 7(4), 3–7.

French, D. P., Wade, A. N., & Farmer, A. J. (2013). Predicting self-care behavior of patients with type 2 diabetes: The importance of beliefs about behavior, not just beliefs about illness. Journal of Psychosomatic Research, 74(4), 327–333.

Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness represen-tations. Psychology and Health, 18, 141–184.

Hefferon, K., Grealy, M., & Mutrie, N. (2009). Post-traumatic growth and life threatening physical illness:

A systematic review of the qualitative literature. British Journal of Health Psychology, 14, 343–378. doi: 10.1348/135910708X332936

Hoyt, M. A., & Stanton, A. L. (2012). Adjustment to chronic illness. In A. Baum, T. A. Revenson, & J. Singer (Eds.), Handbook of health psychology (2nd ed., pp. 219–246). New York, NY: Psychology Press.

Hundt, N. E., Bensadon, B. A., Stanley, M. A., Petersen, N. J., Kunik, M. E., Kauth, M. R., & Cully, J. A. (2013). Coping mediates the relationship between disease severity and illness intrusiveness among chroni-cally ill patients. Journal of Health Psychology, 0(0), 1–10. doi: 10.1177/1359105313509845

Jensen, M. P., Moore, M. R., Bockow, T. R., Ehde, D. M., & Engel, J. M. (2011). Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: A systematic review. Archives of Physical Medicine and Rehabilitation, 92, 146–160. doi: 10.1016/j.apmr.2010.09.021

Lazarus, R. S. (1966). Psychological stress and the coping pro-cess. New York, NY: McGraw-Hill.

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York, NY: Springer.

Lee, V., Cohen, S. R., Edgar, L., Laizner, A. M., & Gagnon, A. J. (2006). Meaning-making intervention during breast or colorectal cancer treatment improves self-esteem, optimism, and self-efficacy. Social Science & Medicine, 62, 3133–3145. doi: 10.1016/j.socs-cimed.2005.11.041

Leventhal, H., Bodnar-Deren, S., Breland, J., Hash-Converse, J., Phillips, L., Levanthal, E., & Cameron, L. (2012). Modeling health and illness behavior. In A. Baum, T. Revenson, & J. Singer (Eds.), Handbook of health psychology (2nd ed., pp. 3–35). New York, NY: Psychology Press.

Lorig, K., & Holman, H. (2003). Self-management edu-cation: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1), 1–7.

Marcano Belisario, J. S., Huckvale, K., Greenfield, G., Car, J., & Gunn, L. H. (2013). Smartphone and tab-let self-management apps for asthma (intervention review). Cochran Database of Systematic Reviews, 11, CD010013. doi: 10.1002/14651858.CD010013.pub2

McAndrew, L. M., Musumeci-Szabo, T. J., Mora, P. A., Vileikyte, L….. Levanthal, H. (2008). Using the common sense model to design interventions for the prevention and management of chronic illness threats: From description to process. British Journal of Health Psychology, 13, 195–204.

McCorkle, R., Ercolano, S., Lazenby, M., Schulman-Green, D., Schilling, L. S., Lorig, K., & Wagner, E. H. (2011). Self-management: Enabling and empowering


9781284057911_CH03_PASS02.indd 60 15/09/14 4:58 PM


patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians, 61(1), 50–62.

Miller, W. R., & Rollnick, S. (1991). Motivational inter-viewing: Preparing people to change addictive behavior. New York, NY: Guilford Press.

Mirowsky, J., & Ross, C. (2002). Measurement for a human science. Journal of Health and Social Behavior, 43, 152–170.

Murray, E., Burns, J., See Tai, S., Lai, R., & Nazareth, I. (2005). Interactive health communication applica-tions for people with chronic disease (intervention review). Cochrane Database of Systematic Reviews 2005, 4, CD004274. doi: 10.1002/14651858.CD004274.pub5

Mustafa, M., Carson-Stevens, A., Gillespie, D., & Edwards, A. G. K. (2013). Psychological interventions for women with metastatic breast cancer. Cochrane Database of Systematic Reviews 2013, 6, CD004253. doi: 10.1002/14651858.CD004253.pub4

Pak, K., Eastwood, S. V., Michie, S., Farmer, A. J., Barnar, M. L., Peacock, R., … Murray, E. (2013). Computer-based diabetes self-management interven-tions for adults with type 2 diabetes mellitus. Cochrane Database of Systematic Reviews 2013, 3, CD008776. doi: 10.1002/14651858.CD008776.pub2

Pakenham, K. I. (2007). Making sense of multiple sclero-sis. Rehabilitation Psychology, 52(4), 380–389.

Pakenham, K. I., & Cox, S. (2009). The dimensional structure of benefit finding in multiple sclerosis and relations with positive and negative adjustment: A longitudinal study. Psychology and Health, 24(4), 373–393. doi: 10.1080/0887044070701832592

Parahoo, K., McDonough, S., McCaughan, E., Noyes, J., Semple, C., Halstead, E. J., … Dahm, P. (2013). Psychosocial interventions for men with prostate can-cer. Cochrane Database of Systematic Reviews 2013, 12, CD008529. doi: 10.1002/14651858.CD008529.pub3

Park, C. L. (2009). Overview of theoretical perspec-tives. In C. L. Park, S. C. Lechner, M. H. Antoni, & M. L. Stanton (Eds.). Medical illness and positive life change: Can crisis lead to personal transformation (pp. 11–30). Washington, DC: American Psychological Association.

Park, C. L., Lechner, S. C., Antoni, M. H., & Stanton, M. L. (Eds.). (2009). Medical illness and positive life change: Can crisis lead to personal transformation. Washington, DC: American Psychological Association.

Parry, M., & Watt-Watson, J. (2010). Peer sup-port intervention trials for individuals with heart disease: A systematic review. European Journal of Cardiovascular Nursing, 9, 57–67. doi: 10.1016/j.ejcnurse.2009.10.002

Pasricha, A., Deinstadt, R., Moher, D., Killoran, A., Rourke, S., & Kendall, C. (2012). Chronic care model decision support and clinical information systems interventions for people living with HIV: A system-atic review. Journal of General Internal Medicine 28(1), 127–135.

Robert Wood Johnson Foundation. (2006–2011). Improving chronic illness care. http://www.improving-chroniccare.org/index.php?p=About_US&s=6

Rollnick, S., Miller, W. R., & Butler, C. C. (2008). Motivational interviewing in health care: Helping patients change behavior. New York, NY: Guilford Press

Sharpe, L., & Curran, L. (2006). Understanding the pro-cess of adjustment to illness. Social Science & Medicine, 62, 1153–1166.

Snell, D. L., Hay-Smith, E. J. C., Surgenor, L. J., & Siegert, R. J. (2013). Explanation of outcomes after mild traumatic brain injury: The contribu-tion of injury belief and Leventhal’s common sense model. Neuropsychological Rehabilitation: An International Journal, 23(3), 333–362. doi: 10.1080.096585211.2012.758419

Solomon, D. H., Iversen, M. D., Avorn, J., Gleeson, T., Brookhart, M. A., Patrick, A. R., … Katz, J. N. (2012). Osteoporosis telephonic intervention to improve medication regimen adherence: A large prag-matic randomized controlled trial. Archives of Internal Medicine, 172(6), 477–483.

Stanton, A. L., & Revenson, T. A. (2007). Adjustment to chronic disease: Progress and promise in research. In H. S. Friedman & R. C. Silver (Eds.), Foundations of health psychology (pp. 203–233). New York, NY: Oxford University Press.

Stellefson, M., Dipnarine, K., & Stopka, C. (2013). The chronic care model and diabetes management in U.S. primary care settings: A systematic review. Preventing Chronic Disease, 10, 120180. doi: http://dx.doi.org /10.5888/pcd10.120180.

Strom, J. L., & Egede, L. E. (2012). The impact of social support on outcomes in adult patients with type 2 diabetes: A systematic review. Current Diabetes Reports, 12, 769–781.

Stuifbergen, A. K., Morris, M., Jung, J. H., Pierini, D., & Morgan, S. (2010). Benefits of wellness interventions for persons with chronic and disabling conditions: A review of the evidence. Disability and Health Journal, 3, 133–145. doi: 10.1016/j.dhjo.2009.10.007

Suls, J. M., Krantz, D. S., & Williams, G. C. (2013). Three strategies for bridging different levels of analy-sis and embracing the biopsychosocial model. Health Psychology, 32(5), 597–601.

References 61

9781284057911_CH03_PASS02.indd 61 15/09/14 4:58 PM


Suls, J. M., Luger, T., & Martin, R. (2010). The bio-psychosocial model and the use of theory in health psychology. In J. M. Suls, K. W. Davidson, & R. M. Kaplan (Eds.), Handbook of health psychology and behavioral medicine (pp. 15–27). New York, NY: Guilford Press

Swendeman, D., Ingram, B. L., & Rotheram-Borus, M. J. (2009). Common elements in self-management of HIV and other chronic Illnesses: An integrative framework. AIDS Care, 21(10), 1321–1334.

Visotsky, H. M., Hamburg, D. A., Goss, M. E., & Lebovits, B. Z. (1961). Coping behavior under extreme stress: Observations of patients with severe poliomyeli-tis. Archives of General Psychiatry, 5, 27–52.

Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1, 2–4.

Wagner, E. H., Austin, B. T., Davis, C., Hindmarch, M., Schafer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs, 20(6), 64–78.

Waisbond, S. (2007). Beyond the medical-informational model: Recasting the role of communication in tuberculosis control. Social Science & Medicine, 65(10), 2130–2134.

Weinert, C., Cudney, S., Comstock, B., & Bansal, A. (2011). Computer intervention impact on psy-chosocial adaptation of rural women with chronic conditions. Nursing Research, 60(2), 82–91. doi: 10.1097/NNR.0b013e3181ffbcf2

Weinert, C., Cudney, S., & Spring, A. (2008). Evolution of a conceptual model for adaptation to chronic illness. Journal of Nursing Scholarship, 40(4), 364–372.

Wise, M., & Marchand, L. (2013). Living fully in the shadow of mortal time: Psychosocial assets in advanced cancer. Journal of Palliative Care, 29(2), 76–82.

Zautra, A. J., Hall, J. S., & Murray, K. E. (2010). Resilience: A new definition of health for people and communities. In J. W. Reich, A. J. Zautra, & J. S. Hall (Eds.), Handbook of adult resilience (pp. 3–29). New York, NY: Guilford Press.


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