Describe how the Uncertainty in Illness Theory (UIT) and Reconceptualized Uncertainty in Illness Theory (RUIT) correspond with caring in the human health experience. Provide examples

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CHAPTER 4 Theories of Uncertainty in Illness

Margaret F. Clayton, Marleah Dean, and Merle Mishel

In this chapter, theories of uncertainty in illness are described. The original uncertainty in illness theory (UIT) was developed by Mishel to address uncer- tainty during the diagnostic and treatment phases of an illness or an illness with a determined downward trajectory (Mishel, 1988). Subsequently a recon- ceptualized uncertainty in illness theory (RUIT) was developed by Mishel to address the experience of living with continuous uncertainty in either a chronic illness requiring ongoing management or an illness with a possibility of recur- rence (Mishel, 1990). Since development of the original theory, the concept of uncertainty has been used in many disciplines including nursing, medicine, and health communication with slightly differing defi nitions, extensions, and applications. Companion instruments to measure uncertainty in illness have been translated into many languages and used extensively (Mishel 1983a, 1997c).

The UIT proposes that uncertainty exists in illness situations, which are ambiguous, complex, and unpredictable. Uncertainty is defi ned as the inabil- ity to determine the meaning of illness-related events. It is a cognitive state created when the individual cannot adequately structure or categorize an illness event because of insuffi cient cues (Mishel, 1988). The theory explains how patients cognitively structure a schema for the subjective interpretation of uncertainty with treatments and outcomes. It is composed of three major themes: (a) antecedents of uncertainty, (b) appraisal of uncertainty, and (c) coping with uncertainty. Uncertainty and cognitive schema are the major con- cepts of the theory.

The RUIT retains the defi nition of uncertainty and major themes, as in the UIT, but adds the concepts of self-organization and probabilistic thinking. The RUIT addresses the process that occurs when a person lives with unremitting uncertainty found in chronic illness or in illness with a potential for recur- rence. The desired outcome from the RUIT is a growth to a new value system, whereas the outcome of the UIT is a return to the previous level of adaptation or functioning (Mishel, 1990).

Copyright Springer Publishing Company. All Rights Reserved. From: Middle Range Theory for Nursing, Fourth Edition DOI: 10.1891/9780826159922.0004

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■ PURPOSE OF THE THEORIES AND HOW THEY WERE DEVELOPED

The purpose of each theory is to describe and explain uncertainty as a basis for practice and research. The UIT applies to the prediagnostic, diagnostic, and treatment phases of acute and chronic illnesses. The RUIT applies to enduring uncertainty in chronic illness or illness with the possibility of recurrence that requires self-management. The theories focus on the ill individual and on the family or parent of an ill individual. The use of theory within groups or com- munities is not consistent.

The fi nding that uncertainty was reported to be common among people experiencing illness or receiving medical treatment led to the creation of the UIT (Mishel, 1988). Although the concept was cited in the literature, there was no substantive exploration of how uncertainty developed and was resolved. It was a personal experience with Mishel’s ill father that catalyzed the concept for her as she relays in earlier editions of this chapter and to me (Clayton). During my dissertation studies with Dr. Mishel as dissertation chair (Mishel & Clayton, 2003, 2008), Mishel’s father was dying from colon cancer. His body was swollen and emaciated. He did not understand what was happening, so he focused on whatever he could control to provide some degree of predict- ability. The effort he spent on achieving understanding crystallized the signifi – cance of his uncertainty.

Developing the UIT included a synthesis of the research on uncertainty, cognitive processing, and managing threatening events. The UIT was revised from the original measurement model published in 1981, to the RUIT pub- lished in 1988. During Mishel’s doctoral study, she focused on the develop- ment and testing of a measure of uncertainty. At that time she was infl uenced by the literature on stress and coping that discussed uncertainty as one type of stressful event (Lazarus, 1974) and by the work of Norton (1975), who identi- fi ed eight dimensions of uncertainty. His work—along with that of Moos and Tsu (1977)—formed a framework leading to the development of the Mishel Uncertainty in Illness Scale (Mishel, 1997c).

Mishel’s early ideas were further infl uenced by Bower (1978) and Shalit (1977), who described uncertainty as a complex cognitive stressor, and by Budner (1962), who described ambiguous, novel, or complex stimuli as sources of uncertainty. The ideas of these cognitive psychologists infl uenced Mishel’s view of uncertainty as a cognitive state rather than as an emotional response. This distinction directed ongoing theory development. Uncertainty as a stressor or threat was based on the work of both Shalit (1977) and Lazarus (1974). The descriptions of coping as a primary appraisal of uncertainty and response to uncertainty as a secondary appraisal were adapted from the work of Lazarus (1974). The original 33-item Uncertainty in Illness Scale (Mishel, 1981) incorpo- rated the work of these primary sources to conceptualize uncertainty in illness. Other population-specifi c forms have been developed, for example a 23-item version for community dwelling adults (Mishel, 1997c, 1997b), a 22-item version

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  51

for cancer survivors (Mishel, 1997c), a 22-item version for children and adoles- cents (the USK, Uncertainty Scale for Kids; Stewart, Lynn, & Mishel, 2010), and a version for use with parents of hospitalized children (Mishel, 1983b). More recently, a 5-item short form for use with adults has been developed and vali- dated (Hagen et al., 2015).

When the Uncertainty in Illness Scale was published, a body of fi ndings on uncertainty quickly emerged in the nursing literature (Mishel, 1983a, 1984; Mishel & Braden, 1987, 1988; Mishel & Murdaugh, 1987; Mishel, Hostetter, King, & Graham, 1984). Research fi ndings on uncertainty substantiated the antecedents of the theory. The stimuli frame variable, composed of familiar- ity of events and congruence of events, was formed from research on uncer- tainty in illness and research in cognitive psychology. Symptom pattern was developed from qualitative studies (Mishel & Murdaugh, 1987) describing the importance of consistency of symptoms to form a pattern. The antecedent of cognitive capacities was based on cognitive psychology (Mandler, 1979), and practice knowledge about instructing patients when cognitive processing abili- ties were compromised. The fi nal antecedent of structure providers was devel- oped from research on uncertainty in illness.

The appraisal section of the theory was developed using sources from the original 1981 model and based on clinical data and discussions with col- leagues. Personality variables were thought to be important in the evaluation of uncertainty, and clinical data indicated that uncertainty could be a pre- ferred state under specifi c circumstances. This led to inclusion of inference and illusion as two phases of appraisal (Mishel & Braden, 1987; Mishel & Murdaugh, 1987).

The RUIT was developed through discussion with colleagues, qualitative data from chronically ill individuals, and an awareness of the limitations of the UIT. The UIT was linear and explained uncertainty in the acute and treatment phases of illness, but did not address life changes over time expressed by per- sons with chronic illness. Qualitative interviews with chronically ill individu- als revealed continuous uncertainty and a new view of life that incorporated uncertainty. From the perspective of Critical Social Theory (Allen, 1985), the patient’s desire for certainty may refl ect the goals of control and predictability that form the sociohistorical values of Western society (Mishel, 1990). Clinical data revealed that those who chose to incorporate uncertainty into their lives were living a value system on the edge of mainstream ideas. To explain the clinical data, a framework that conceptualized uncertainty as a preferred state was initiated using the process of theory derivation described by Walker and Avant (1989). Chaos was chosen as the parent theory to reconceptualize uncer- tainty. Chaos theory emphasizes disorder, instability, diversity, disequilibrium, and restructuring as the healthy variability of a system (Prigogine & Stengers, 1984). The reconceptualized theory included ideas of disorganization and reformulation of a new stability to explain how a person with enduring uncer- tainty emerges with a new view of life.

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Drawing from chaos theory (Prigogine & Stengers, 1984), uncertainty is viewed as a force that spreads from illness to other areas of a person’s life and competes with the person’s previous mode of functioning. As uncertain areas of life increase, pattern disruption occurs, and uncertainty feeds back on itself and generates more uncertainty. When uncertainty persists, its inten- sity exceeds a person’s level of tolerance. There is a sense of disorganization that promotes personal instability. With a high level of disorganization comes a loss of a sense of coherence (Antonovsky, 1987). A system in disorganization begins to reorganize at an imperceptible level that represents a gradual transi- tion from a perspective of life oriented to predictability and control to a new view of life in which multiple contingencies are preferable.

■ CONCEPTS OF THE THEORIES

Uncertainty is the central theoretical concept, defi ned as the inability to deter- mine the meaning of illness-related events inclusive of inability to assign defi nite value and/or to accurately predict outcomes (Mishel, 1988). Another concept central to the uncertainty theory is cognitive schema, which is defi ned as the person’s subjective interpretation of illness-related events (see Figure 4.1). The UIT is organized around three major themes related to the concepts: (a) antecedents of uncertainty, (b) appraisal of uncertainty, and (c) coping with uncertainty.

Stimuli frame Symptom pattern Event familiarity Event congruency

Cognitive capacities

Structure providers

Credible authority Social support Education

Adaptation

Coping: Buffering strategies

Uncertainty Inference Illusion

A pp

ra is

al

(+)

Coping mobilizing strategies

Affect- control strategies

(+)

Danger

Opportunity

(−)

(−)

(+) (+)

FIGURE 4.1 Perceived uncertainty in illness. Source: Reprinted with permission from Mishel, M. H. (1988). Uncertainty in illness. The Journal of Nursing

Scholarship, 20(4), 225–232.

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The ideas included in the antecedent theme of the theory include stimuli frame, cognitive capacity, and structure providers. Stimuli frame is defi ned as the form, composition, and structure of the stimuli that the person perceives. The stimuli frame has three components: symptom pattern, event familiarity, and event congruence. Symptom pattern refers to the degree to which symp- toms are present with suffi cient consistency to be perceived as having a pat- tern or confi guration. Event familiarity is the degree to which the situation is habitual, repetitive, or contains recognized cues. Event congruence refers to the consistency between the expected and the experienced illness-related events. Cognitive capacity and structure providers infl uence the three compo- nents of the stimuli frame. Cognitive capacity is the information-processing ability of the individual.

Structure providers are the resources available to assist the person in the interpretation of the stimuli frame. Structure providers include education, social support, and credible authority.

The second major theme in the UIT is appraisal of uncertainty, which is defi ned as the process of placing a value on the uncertain event or situation. There are two components of appraisal: inference or illusion. Inference refers to the evaluation of uncertainty using related examples and is built on personal- ity dispositions, general experience, knowledge, and contextual cues. Illusion refers to the construction of beliefs formed from uncertainty that have a posi- tive outlook. The result of appraisal is the valuing of uncertainty as a danger or an opportunity.

The third theme in the UIT is coping with uncertainty and includes danger, opportunity, coping, and adaptation. Danger is the possibility of a harmful outcome. Opportunity is the possibility of a positive outcome. Coping with a danger appraisal is defi ned as activities directed toward reducing uncertainty and managing the emotion generated by a danger appraisal. Coping with an opportunity appraisal is defi ned as activities directed toward maintain- ing uncertainty. Adaptation is defi ned as biopsychosocial behavior occurring within the person’s individually defi ned range of usual behavior.

The RUIT includes the antecedent theme in the UIT and adds the two con- cepts of self-organization and probabilistic thinking. Self-organization is the reformulation of a new sense of order, resulting from the integration of con- tinuous uncertainty into one’s self-structure in which uncertainty is accepted as the natural rhythm of life. Probabilistic thinking is a belief in a conditional world in which the expectation of certainty and predictability is abandoned. The RUIT proposes four factors that infl uence the formation of a new life perspective: prior life experience, physiological status, social resources, and healthcare providers. In the process of reorganization, the person reevaluates uncertainty by gradual approximations, from an aversive experience to one of opportunity. Thus, uncertainty becomes the foundation for a new sense of order and is accepted as the natural rhythm of life. There is an ability to focus on multiple alternatives, choices, and possibilities; reevaluate what is

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important in life; consider variation in personal investment; and appreciate the impermanence and fragility of life. The theory also identifi es conditions under which the new ability is maintained or blocked.

The concepts of both theories tie clearly to nursing, and other healthcare- related disciplines by describing and explaining human responses to illness situations. Uncertainty crosses all phases of illness from prediagnosis symp- tomatology to diagnosis, treatment, treatment residuals, recovery, potential recurrence, and exacerbation. Thus, the theories are pertinent to the health experience for all age groups. Uncertainty is experienced by ill persons but also caregivers and parents of ill children. Moreover, the theories incorporate a consideration of the healthcare environment as a component of the stimuli frame and the broader support network. Nursing care is represented under the concept of structure providers. Because an important part of nursing involves explaining and providing information, it follows that nursing actions are inter- ventions to help patients manage uncertainty. The outcomes of both theories are directly related to health. The health outcome is to regain personal control, as in adaptation (UIT) or consciousness expansion (RUIT).

■ RELATIONSHIPS AMONG THE CONCEPTS: THE MODELS

As seen in Figure 4.1, the UIT is displayed as a linear model with no feedback loops. According to this model, uncertainty is the result of antecedents. The major path to uncertainty is through the stimuli frame variables. Cognitive capacities infl uence stimuli frame variables. If the person has a compromised cognitive capacity due to fever, infection, pain, or mind-altering medication, the clarity and defi nition of the stimuli frame variables are likely to be reduced, resulting in uncertainty. In such a situation, it is assumed that stimuli frame variables are clear, patterned, and distinct, and only become less so because of limitations in cognitive capacity. However, when cognitive capacity is ade- quate, stimuli frame variables may still lack a symptom pattern or be unfamiliar and incongruent due to lack of information, complex information, informa- tion overload, or confl icting information. The structure provider variables then come into play to alter the stimuli frame variables by interpreting, providing meaning, and explaining. These actions serve to structure the stimuli frame, thereby reducing or preventing uncertainty. Structure providers may also directly impact uncertainty. The healthcare provider can offer explanations or use other approaches that directly reduce uncertainty. Similarly, uncertainty can be reduced by one’s level of education and resultant knowledge. Social support networks also infl uence the stimuli frame by providing information from similar others, providing examples, and offering supportive information.

Uncertainty is viewed as a neutral state and is not associated with emotions until evaluated. During the evaluation of uncertainty, inference and illusion come into play. Inference and illusion are based on beliefs and personality

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dispositions that infl uence whether uncertainty is appraised as a danger or as an opportunity. Because uncertainty renders a situation amorphous and ill- defi ned, positively oriented illusions can be generated from uncertainty, lead- ing to an appraisal of uncertainty as an opportunity. Uncertainty appraised as an opportunity implies a positive outcome, and buffering coping strategies are used to maintain it. In contrast, beliefs and personality dispositions can result in uncertainty appraised as danger. Uncertainty evaluated as danger implies harm. Problem-focused coping strategies are employed to reduce it. If prob- lem-focused coping cannot be used, then emotional coping strategies are used to respond to the uncertainty. If the coping strategies are effective, adaptation occurs. Diffi culty in adapting indicates inability to manipulate uncertainty in the desired direction.

In contrast to the more linear nature of the UIT, the RUIT (Figure 4.2) rep- resents the process of moving from uncertainty appraised as danger to uncer- tainty appraised as an opportunity and resource for a new view of life. As noted earlier in this chapter, the reconceptualized theory builds on the original theory at the appraisal portion. The RUIT describes enduring uncertainty that is initially viewed as danger due to its invasion into broader areas of life result- ing in instability. The jagged line within the arrow represents both the invasion of uncertainty and the growing instability. The patterned circular portion of the line represents the repatterning and reorganization resulting in a revised view of uncertainty. The bottom arrow indicates that this is a process that evolves over time.

■ USE OF THE UNCERTAINTY THEORIES

Beginning with the publication of the Uncertainty in Illness Scale (Mishel, 1981), there has been extensive research into uncertainty in both acute and chronic illnesses. The research on uncertainty includes studies in nurs- ing and other disciplines. Several comprehensive reviews of research have

OpportunityUncertainty

Time

Danger

FIGURE 4.2 Uncertainty in chronic illness. Source: Reprinted with permission from Bailey, D. E., & Stewart, J. L. (2001). Mishel’s theory of uncertainty in illness. In A. M. Mariner-Tomey & M. R. Alligood (Eds.), Nursing theorists and their work (5th ed., pp. 560–583). St. Louis, MO: Mosby.

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summarized and critiqued the current state of the knowledge on uncertainty in illness (Bailey & Stewart, 2001; Barron, 2000; Dean & Street, 2015; Mast, 1995; McCormick, 2002; Mishel, 1997b, 1999; Neville, 2003; Shaha, Cox, Talman, & Kelly, 2008; Stewart & Mishel, 2000). Other authors have attempted to develop an expanded defi nition of uncertainty (Penrod, 2001) or have critiqued the current work based on a misunderstanding of the reconceptualized uncer- tainty theory (Parry, 2003).

Although some studies focus on components of the UIT or RUIT, more recent studies have used uncertainty as the conceptual framework for the study and directly tested major sections of the UIT, elaborated on the UIT, or elaborated on selected antecedents and outcomes adding richness to the theory (Clayton, Mishel, M. H., & Belyea 2006; Dimillo et al., 2013; Farren, 2010; Hebdon, Foli, & McComb, 2015; Jurgens, 2006; Kang, 2005, 2006, 2011; Kang, Daly, & Kim, 2004; Kim, Lee, & Lee, 2012; Lin, Yeh, & Mishel, 2010; McCormick, Naimark, & Tate, 2006; Sammarco, 2001; Sammarco & Konency, 2010; Santacroce, 2003; Stewart, Mishel, Lynn, & Terhorst, 2010; Wonghongkul, Dechaprom, Phumivichuvate, & Losawatkul, 2006). Mishel’s Uncertainty in Illness Scale—Community Form has demonstrated validity and reliability for measuring uncertainty in men undergoing active surveillance for early-stage prostate cancer (Bailey et al., 2011) and ethnically diverse female breast cancer survivors (Hagen et al., 2015; Liao, Chen, Chen, & Chen, 2008; Sammarco & Konecny, 2010). The theory has also been used as the basis for revising the Parent’s Perception of Uncertainty Scale (Santacroce, 2001). In a study by Kang et al. (2004), researchers operation- alized and tested the antecedents of social support and education as structure providers along with the stimuli frame variable of symptom pattern on uncer- tainty in patients with atrial fi brillation. Symptom severity was the strongest predictor of uncertainty, whereas the structure provider variables of education and social support reduced uncertainty. An unusual grounded theory study explored children’s perception of uncertainty during treatment for cancer, cit- ing the uncertainty theory as the sensitizing theory (Stewart, 2003). A study in children and adolescents with cancer used the uncertainty theory to guide a conceptual model that served as the study framework; a strong relationship was found between children’s uncertainty and psychological distress (Stewart, Mishel, Lynn, & Terhorst, 2010).

The uncertainty theory has grown through research studies in the areas of credible authority and social support as the theory has been used by investi- gators in nursing and health communication (Brashers et al., 2003; Brashers, Neidig, & Goldsmith, 2004; Clayton et al., 2006; Miller, 2014; Middleton, LaVoie, & Brown, 2012). For example, Brashers, a health communication scholar (colleague of Mishel and a member of Clayton’s dissertation commit- tee), expanded Mishel’s work into the fi eld of health communication, devel- oping the Uncertainty Management Theory, which was heavily infl uenced by Mishel’s theoretical conceptualization of uncertainty. This expanded uncer- tainty theory has been used in HIV populations, noting that management

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  57

of uncertainty may preserve hope (Brashers et al., 2000). Brashers’s work is important as it illustrates how theoretical development can bridge disciplines, in this case nursing and health communication, contributing to team and interdisciplinary science. Clayton’s work in nursing science also addresses the role of structure providers evaluating the contribution of patient–provider communication (contribution of structure providers as a credible authority) as a way to infl uence the appraisal of uncertainty among breast cancer survi- vors (Clayton & Dudley, 2009; Clayton, Mishel, & Belyea, 2006). Many stud- ies have focused on the antecedents of stimuli frame and structure providers. For instance, three aspects of illness have been found to cause uncertainty: (a) severity of illness, (b) erratic nature of symptoms, and (c) ambiguity of symp- toms. Severity of illness and ambiguity of symptoms correspond to the stimuli frame component of symptom pattern, whereas the erratic nature of symptoms corresponds to the stimuli component of event congruence.

Studies that focus on severity of illness and uncertainty are classifi ed as those that address the theoretical link between symptom pattern and uncer- tainty. Severity of illness refers to symptoms with such intensity that they do not clearly refl ect a discernable, understandable pattern. Several studies have shown that severity of illness is a predictor of uncertainty, although the indica- tors of severity of illness have varied across studies (Mishel, 1997b). Among patients in the acute or treatment phase of illnesses such as cardiovascular dis- ease (Christman et al., 1988), cancer (Galloway & Graydon, 1996; Hilton, 1994), fi bromyalgia (Johnson, Zautra, & Davis, 2006), and severe pediatric illness and cancer (Tomlinson, Kirschbaum, Harbaugh, & Anderson, 1996; Santacroce, 2002), severity of illness was positively associated with uncertainty in patients and/or family members. Thus, according to the UIT, the nature of the severity presents diffi culty delineating a symptom pattern about the extent of the dis- ease, resulting in uncertainty.

Stimuli Frame: Symptom Pattern

Studies that address the process of identifying symptoms of a disease or condi- tion and reaching a diagnosis are classifi ed as addressing symptom pattern. The process of receiving a diagnosis requires that a symptom pattern exists and can be labeled as an illness or a condition. In the UIT, absence of the symptom pat- tern is associated with uncertainty. Uncertainty levels have been reported to be highest in those without a diagnosis and undergoing diagnostic examinations (Hilton, 1993; Mishel, 1981). In studies where patients’ symptoms are not clearly distinguishable from those of other comorbid conditions, or where symptoms of recurrence can be confused with signs of aging or other natural processes and not recognizable as signs of disease, such as in lupus, breast cancer, and cardiac disease, symptoms are associated with uncertainty (Hilton, 1988; Mishel & Murdaugh, 1987; Nelson, 1996; Winters, 1999). In a study of long-term breast cancer survivors, it was not the symptoms that elicited uncertainty but events

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that triggered thoughts of recurrence or the meaning of physical symptoms from long-term treatment side effects (Gil et al., 2004). High levels of symptoms such as pain are associated with uncertainty when one does not know how to man- age the symptoms (Johnson et al., 2006). Additionally, fatigue, insomnia, and affect changes were associated with elevated cancer-related uncertainty among young breast cancer survivors (Hall, Mishel, & Germino, 2014). Researchers investigating Korean breast cancer survivors’ uncertainty across the trajectory of their treatment found women undergoing treatment experienced higher levels of uncertainty than after treatment, and the majority of the symptoms women experienced during radiation and chemotherapy treatment were cor- related with uncertainty (Kim, Lee, & Lee, 2012). Other research has focused on understanding the ambiguity of symptom experience associated with preterm labor (Weiss, Saks, & Harris, 2002). Even previous experience with preterm labor did not reduce the ambiguity associated with this condition.

The erratic nature of symptom onset and disease progression is a major ante- cedent of uncertainty in chronic illness (Mishel, 1999). Symptoms that occur unpredictably fi t the description of the stimuli frame component of event incongruence because there is no congruity between the cue and the outcome. The timing and nature of symptom onset, duration, intensity, and location are unforeseeable, characterized by periods of stability, erratic fl ares of exacerba- tion, or unpredictable recurrence resulting in uncertainty (Brown & Powell- Cope, 1991; Mast, 1998; Mishel & Braden, 1988; Sexton, Calcasola, Bottomley, & Funk, 1999). For example, research has demonstrated the association between uncertainty and physical symptoms of breast cancer survivors, demonstrating that unpredictable physical symptoms that come and go, such as fatigue and arm problems, can create uncertainty about breast cancer recurrence (Clayton et al., 2006; Wonghongkul et al., 2006). Similarly, diffi culty being aware of phys- ical symptoms and determining their meaning in acute heart failure patients has also been found to be related to greater uncertainty (Jurgens, 2006). Among parents of ill children, unpredictable trajectories with few markers of illness are positively associated with uncertainty (Cohen, 1993b). Diffi culty in determin- ing cause of illness has been found to be associated with uncertainty (Cohen, 1993a; Sharkey, 1995; Turner, Tomlinson, & Harbaugh, 1990). Recent work on patients with endometriosis found that because no cure exists and treatment effectiveness varies, patients experience uncertainty surrounding the relation- ship of diagnosis to treatment outcomes (Lemaire, 2004). In young adults with asthma, uncertainty has been proposed to occur due to episode severity and/ or frequency, which is not contingent upon the person’s attempt to manage the illness (Mullins, Chaney, Balderson, & Hommel, 2000).

Stimuli Frame: Event Familiarity

Studies that focus on the h

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