nursing theory

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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

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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 healthcare or home environment for treatment of illness fi t under the stimuli frame component of event familiarity. Although

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fewer studies have addressed this component of stimuli frame, the studies that have been conducted support that unfamiliarity with healthcare environment, organization, and expectations is associated with uncertainty. Healthcare envi- ronments characterized by novelty and confusion where the rules and routines are unknown and equipment and treatments are unfamiliar are associated with uncertainty (Horner, 1997; Stewart & Mishel, 2000; Turner et al., 1990). A synthesis and critique of the healthcare environment and uncertainty theories, including UIT, across disciplines can be found in the work of Han, Klein, and Arora (2011).

Structure Providers: Social Support

In the UIT, social support from friends, family, and those with similar experi- ences are proposed to reduce uncertainty directly and indirectly by infl uencing the stimuli frame. Those with similar experience have been found to infl uence the stimuli frame by providing information about illness-related events and symptom pattern (Van Riper & Selder, 1989; White & Frasure-Smith, 1995). There are a number of studies that support the role of social support in reduc- ing uncertainty among parents of ill children, adult and adolescent patients, and their care providers (Bennett, 1993; Davis, 1990; Mishel & Braden, 1987; Neville, 1998; Tomlinson et al., 1996). For example, research with Taiwanese older cancer patients identifi ed family members and healthcare providers as key sources of social support where family members such as spouses provided emotional support and healthcare providers offered information support (Lien, Lin, Kuo, & Chen, 2009).

However, when the illness is stigmatized, the questionable acceptance by others limits the use of social support to manage uncertainty (Brown & Powell-Cope, 1991; Weitz, 1989). Social interaction also may not always be sup- portive. Unsupportive interactions serve to heighten uncertainty (Wineman, 1990). The dual impact of social support has also been investigated in men with HIV/AIDS. Brashers et al. (2004) reported that other individuals help HIV patients manage uncertainty by providing instrumental support, facilitat- ing skill development, giving acceptance or validation, allowing ventilation, and encouraging a perspective shift. They also report that there are problems associated with social support and uncertainty management including a lack of coordination in managing uncertainty, the addition of relational uncertainty, and the burden of caregiver uncertainty. Other investigators have found that family members experience high levels of uncertainty, which may impair their ability to provide support for the patient (Brown & Powell-Cope, 1991; Mishel & Murdaugh, 1987; Wineman, O’Brien, Nealon, & Kaskel, 1993). In a study of uncertainty in African American and White family members of men with local- ized prostate cancer, uncertainty was associated with family members feeling less positive about treatments and patient recovery, feeling more psychological distress, and engaging in less active problem solving (Germino et al., 1998).

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These fi ndings bring into question the ability of family members to be sup- portive of the patient when family members are trying to deal with their own uncertainties. Among younger breast cancer survivors, both social support and uncertainty together explained 27% of the variance in quality of life, with higher levels of social support functioning to reduce uncertainty (Sammarco, 2001). Current research supports the theoretical relationship between social support and uncertainty and provides information on factors that infl uence effective social support.

Structure Providers: Credible Authority

Credible authority refers to healthcare providers who are seen as credible information givers by the patient or family member. As experts, healthcare providers have been proposed to reduce uncertainty by providing informa- tion and promoting confi dence in their clinical judgment and performance. Trust and confi dence in the healthcare provider’s ability to make a diagnosis, to control the illness, and to provide adequate treatment has been reported to be related to less uncertainty across a variety of acute and chronic illnesses (Mishel & Braden, 1988; Santacroce, 2000). On the other hand, patients’ lack of confi dence in the provider’s abilities increases uncertainty (Becker, Janson- Bjerklie, Benner, Slobin, & Ferdetich, 1993; Smeltzer, 1994). Uncertainty has also been found to increase when patients report that they are not receiving adequate information from healthcare providers (Galloway & Graydon, 1996; Hilton, 1988; Nyhlin, 1990; Small & Graydon, 1993; Weems & Patterson, 1989).

Appraisal of Uncertainty

According to the UIT, appraisal of uncertainty involves personality disposi- tions, attitudes, and beliefs, which infl uence whether uncertainty is appraised as a danger or an opportunity. There is support for the impact of uncertainty on reducing personality dispositions such as optimism, sense of coherence, and level of resourcefulness (Christman, 1990; Hilton, 1989; Mishel et al., 1984). Certain dispositions such as generalized negative outcome expectan- cies interact with uncertainty to predict psychological distress (Mullins et al., 1995). However, selected cognitive and personality factors have been reported to mediate the relationship between uncertainty and danger or opportunity. Mediators that decrease the impact of uncertainty on danger and adjustment include higher enabling skill, self-effi cacy, mastery, hope, challenge, and existen- tial well-being (Braden, Mishel, Longman, & Burns, 1998; Landis, 1996; Mishel, Padilla, Grant, & Sorenson, 1991; Mishel & Sorenson, 1991; Wonghongkul et al., 2006; Wonghongkul, Moore, Musil, Schneider, & Deimling, 2000). Some studies where appraisals were found to be positive are of populations that are a num- ber of years posttreatment. Others have reported that positive appraisals of uncertainty can be found along with negative appraisals, enabling both to exist simultaneously. This has been reported for patients awaiting coronary artery

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  61

bypass surgery where uncertainty can be seen as a source for hope (McCormick et al., 2006). However, work by Kang (2006) with a sample of patients with atrial fi brillation reported that appraisal of uncertainty as an opportunity had a negative relationship with depression, and appraisal of uncertainty as a dan- ger was positively associated with depression. As uncertainty increased, so did the danger appraisal, which was related to a decrease in mental health (Kang, 2005).

Coping With Uncertainty

Numerous investigators who have studied the management of uncertainty have found that higher uncertainty is associated with danger and resultant emotion-focused coping strategies such as wishful thinking, avoidance, and fatalism (Christman, 1990; Hilton, 1989; Mishel & Sorenson, 1991; Mishel et al., 1991; Redeker, 1992; Webster & Christman, 1988). Severe symptoms such as high levels of pain in interaction with uncertainty have been reported to reduce one’s ability to cope with symptoms (Johnson et al., 2006). Others report more varied coping strategies for managing uncertainty including cognitive strate- gies such as downward comparison, constructing a personal scenario for the illness, use of faith or religion, and identifying markers and triggers (Baier, 1995; Mishel & Murdaugh, 1987; Wiener & Dodd, 1993). Mishel (1993) offered a review of major uncertainty management methods; however, there is little evi- dence for the use of any of these coping strategies mediating the relationship between uncertainty and emotional distress (Mast, 1998; Mishel & Sorenson, 1991; Mishel et al., 1991). Although there has not been much study of the role of hopefulness in managing uncertainty, fi ndings from a study of participation in a clinical drug trial revealed that uncertainty was related to a decrease in hope during time in the trial. Those with more uncertainty and less hopeful- ness reported more negative moods (Wineman, Schwetz, Zeller, & Cyphert, 2003). Research with Thai patients being treated for head and neck cancer used the UIT as a framework to study factors that contribute to quality of life as a way to address coping approaches for this population. Findings indicated that symptom experience had a positive impact on uncertainty and uncertainty had a negative impact on quality of life (Detprapon, Sirapo-ngam, Sitthimongkol, Mishel, & Vorapongsathorn, 2009), leading the authors to suggest that coping with symptoms and uncertainty is critical to optimizing quality of life. In the area of uncertainty in children, Stewart (2003) reported that children empha- sized the routine and ordinariness of their lives despite their cancer diagnosis and treatment as a way of coping.

Uncertainty and Adjustment

According to the UIT, adjustment refers to returning to the individual’s level of pre-illness functioning. However, most of the research has interpreted this as emotional stability or quality of life. Few studies have tested the complete

62 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION

outcome portion of the theory, including uncertainty, appraisal, coping strate- gies, and adjustment. Most studies examine the relationship between uncer- tainty and an outcome and relate these fi ndings to the theory. The fi ndings from these studies have consistently shown positive relationships between uncertainty and negative emotional outcomes (Bennett, 1993; Mast, 1998; Mishel, 1984; Mullins et al., 2001; Sanders-Dewey, Mullins, & Chaney, 2001; Small & Graydon, 1993; Taylor-Piliae & Molassiotis, 2001; Wineman, Schwetz, Goodkin, & Rudick, 1996). Further evidence for the signifi cant effect of uncer- tainty on depression was reported by Mullins et al. (2000) in young adults with asthma. The effect of uncertainty on depression was at its maximum under conditions of increased illness severity. Uncertainty has also been related to poorer psychosocial adjustment in the areas of less life satisfaction (Hilton, 1994), negative attitudes toward healthcare, family relationships, recreation and employment (Mishel et al., 1984; Mishel & Braden, 1987), less satisfac- tion with healthcare services (Green & Murton, 1996), poor decision mak- ing (Mishel, 1999; Politi & Street, 2011), and poorer quality of life (D. Carroll, Hamilton, & McGovern, 1999; Padilla, Mishel, & Grant, 1992). Santacroce (2003) identifi ed the linkage between uncertainty and negative outcomes in her literature review on parental uncertainty and posttraumatic stress in seri- ous childhood illness.

There has been extensive study of uncertainty in illness based on the UIT, and most of the research supports components of the theory. Overall, the UIT has been very useful in guiding research with a variety of clinical populations and caregivers.

■ RESEARCH USING THE RUIT

Less attention has been given to the study of the RUIT, possibly due to dif- fi culty in studying a process that evolves over time. Support for the RUIT has been found in qualitative studies that favor a transition through uncertainty to a new orientation toward life with acceptance of uncertainty as a part of life (Mishel, 1999). The samples for these studies included long-term diabetic patients (Nyhlin, 1990), chronically ill men (Charmaz, 1994), HIV patients (Brashers et al., 2003; Katz, 1996), persons with schizophrenia (Baier, 1995), spouses of heart transplant patients (Mishel & Murdaugh, 1987), family care- givers of AIDS patients (Brown & Powell-Cope, 1991), breast cancer survivors (Mishel et al., 2005; Nelson, 1996; Pelusi, 1997), women who are genetically pre- disposed to hereditary breast and ovarian cancer but have not been diagnosed (DiMillo et al., 2013), adolescent survivors of childhood cancer (Parry, 2003), and women recovering from cardiac disease (Fleury, Kimbrell, & Kruszewski, 1995). For example, Bailey, Wallace, and Mishel (2007), using the RUIT as an organizing framework, interviewed men who were undergoing watchful

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  63

waiting during their treatment for prostate cancer. Although the fi ndings were not totally supportive of the RUIT, men did express that they had generated options, created opportunities for themselves, and remained hopeful of a posi- tive outcome. Parry’s (2003) study of childhood cancer survivors suggests that uncertainty can be a catalyst for growth, for a greater appreciation for life, and for greater awareness of life purpose. However, in another study of survivors of childhood cancer, fi ndings showed that uncertainty mediated the relation- ship between posttraumatic stress disorder and health promotion behaviors, indicating that uncertainty exists over time and reduces health promotion activities (Santacroce & Lee, 2006).

Results supporting the RUIT seem to differ by subject population and meth- odology, where more qualitative studies—compared with quantitative stud- ies—support the RUIT. The transition through uncertainty toward a new view of life was framed differently by each investigator and included themes such as a revised life perspective, new ways of being in the world, growth through uncertainty, new levels of self-organization, new goals for living, devaluat- ing what is worthwhile, redefi ning what is normal, and building new dreams (Bailey & Stewart, 2001). All the investigators described the gradual acceptance of uncertainty and the restructuring of reality as major components of the pro- cess, both of which are consistent with the RUIT.

Recently, the RUIT scale has been adapted to examine uncertainty among breast cancer patients and survivors (Farren, 2010; Hagen et al., 2015; Hall et al., 2014) including Korean breast cancer survivors (Kim, Lee, & Lee, 2012), Taiwanese breast cancer patients (Liao et al., 2008), and Taiwanese parents of children with cancer (Lin et al., 2010). The scale addresses growth through uncertainty toward a new view of life and was developed to address the discrepancy noted earlier between qualitative and quantitative approaches to study the RUIT. Initial use of the scale was reported by Mast (1998). The Growth Through Uncertainty Scale (GTUS) has been used in a few clinical investigations. In an intervention study guided by the RUIT, baseline analysis of the data included use of the GTUS. The analysis was to identify variables that would predict either negative mood state or personal growth (GTUS) in older African American and White long-term breast cancer survivors. Of the variables found to be signifi cant predictors, negative cognitive state, which included uncertainty, was a signifi cant predictor of both outcomes. The overall fi ndings were supportive of the RUIT because cognitive reappraisal, defi ned as the tendency to address concerns from a positive point of view, predicted 40% of the variance in personal growth (GTUS; Porter et al., 2006). Also, in fi ndings from this intervention study, at 10 months and 20 months postintervention, older long-term African American breast cancer survivors in the treatment group maintained or increased scores on the GTUS over time, while scores for subjects in the control group declined over time (Gil, Mishel, Belyea, Germino, Porter, & Clayton, 2006; Mishel et al., 2005).

64 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION

■ INTERVENTIONS TO MANAGE UNCERTAINTY

An uncertainty management intervention has been developed and tested in four clinical trials for breast cancer patients and patients with localized or advanced prostate cancer (Braden et al., 1998; Mishel, 1997a; Mitchell, Courtney, & Coyer, 2003; Mishel et al., 2002). The intervention was structured to follow the UIT and was delivered by weekly phone calls to cancer patients. All studies included equal numbers of White and minority samples. The intervention was effective in teaching patients skills to manage uncertainty including improve- ments in problem solving, cognitive reframing, treatment-related side effects, and patient–provider communication. Improvement was also found in the ability to manage the uncertainty related to side effects from cancer treatment. Religious participation and education were found to be moderators of the treat- ment outcomes of cancer knowledge and patient–provider communication in the intervention trial for men with localized prostate cancer. Education was a covariate in the study of older women during treatment for breast cancer. Using the UIT and RUIT as frameworks for study of an intervention for older long-term African American and White breast cancer survivors, a self-deliv- ered uncertainty management intervention with nurse assistance was tested and results indicated that the intervention at 10-month and 20-month follow- up produced signifi cant differences in experimental and control groups in cog- nitive reframing, cancer knowledge, patient–provider communication, and a variety of coping skills. The most important results were the improvement in the treatment groups’ pursuit of further information along with declines in uncertainty and stable effects in personal growth over time (Gil et al., 2006; Mishel et al., 2005).

Further intervention work based on the UIT and the RUIT has been expanded to prostate cancer. Bailey, Mishel, Belyea, Stewart, and Mohler (2004) tested an intervention for men selecting watchful waiting for prostate cancer, fi nding it assisted the men in cognitively reframing and thus effectively managing their uncertainty. Specifi cally, the results from this clinical trial showed that men in the intervention improved on the GTUS on the subscale of living life in a new light and believing that their future would be improved. In another study with the same population, a pilot study with nine participants (Kazer, Baily, Sanda, Colberg, & Kelly, 2011) supported use of an Internet intervention to improve quality of life while uncertainty remained consistent. Additionally, Mishel et al. (2009) developed and tested a decision-making uncertainty management intervention for recently diagnosed prostate cancer patients. They found the intervention improved patients’ knowledge, communication skills, problem solving, and resource management. In similar work, Song and colleagues used the UIT to guide a study evaluating a decision aid designed to improve infor- mation giving and questions asking during prostate cancer treatment consulta- tions (Song et al., 2016). Findings showed that enhanced communication with providers empowered men and their family members.

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  65

In a study of an intervention program that incorporated uncertainty reduc- tion for women with recurrent breast cancer and their family members, fac- tual information about cancer recurrence and treatments encouraged assertive approaches with healthcare providers; participants focused on learning to live with uncertainty in preference to negative certainty (Northouse et al., 2002). An intervention trial for newly diagnosed breast cancer patients in Taiwan used the UIT framework and provided information to questions raised by patients. This continual supportive care was given at four points during treatment. The fi ndings indicated that support was increased and uncertainty was decreased 1 month after surgery and 4 months after diagnosis (Liu, Li, Tang, Huang, & Chiou, 2006). Other intervention studies included uncertainty as a variable but did not use either the UIT or RUIT as a framework for the study or interven- tion (Kreulen & Braden, 2004; McCain et al., 2003; Taylor-Piliae & Chair, 2002). The number of intervention studies using one of the uncertainty theories or including interventions to address uncertainty is continually increasing in the literature.

■ USE OF THE THEORIES IN NURSING PRACTICE

Nurses are included in the UIT as part of the antecedent variable of struc- ture providers. The clinical literature supports delivery of information as the major method to help patients manage uncertainty. Nurses provide informa- tion that helps patients develop meaning from the illness experience by pro- viding structure to the stimuli frame. When considering the RUIT, nurses help patients manage chronic uncertainty by assisting with patients’ reappraisal of uncertainty from stressful to hopeful in addition to providing relevant information.

Understanding the sources of patient uncertainty can help nurses plan for effective information giving and may greatly assist nurses to help patients manage or reduce their uncertainty. In one of the few articles to address the environmental component of the stimuli frame, Sharkey (1995) discussed how family coping could be enhanced by home care nurses normalizing health- care into the familiar routines of families caring for a terminally ill child at home. Among cardiac patients, White and Frasure-Smith (1995) suggested that nurses promote the use of patient-solicited social support to manage uncer- tainty in percutaneous transluminal coronary angioplasty (PTCA) patients. These researchers suggested that the benefi t from the social support received by PTCA patients was due to direct requests tailored to specifi c needs ver- sus unsolicited social support due to simply being ill. In addition, information from nurses about the potential long-term success of this procedure might help reduce the higher uncertainty found in PTCA patients 3 months after surgery. Among breast cancer survivors, Gil et al. (2004, 2005) suggested that nurses can help women identify their personal triggers of uncertainty about recurrence

66 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION

and then teach coping skills such as breathing relaxation, pleasant imagery, calming self-talk, and distraction to help survivors manage their uncertainty.

The RUIT has also been used to inform clinical practice and help nurses understand sources of patient uncertainty. An example of how mental health nurses can assist patients by understanding sources of uncertainty is found in research by Brashers et al. (2003) describing the medical, social, and per- sonal forms of uncertainty for persons living with HIV/AIDS. Further, this research suggests nurses should be aware that subgroups of the population such as women, drug users, gay and lesbian persons, transgender persons, and parents can experience different sources of uncertainty based on social stigma, role and/or identity confusion, and lack of familiarity with the medical system. Other research using the RUIT indicates that childhood cancer survivors often have late emerging side effects that impact quality of life and the experience of uncertainty similar to other long-term cancer survivors (Lee, 2006; Santacroce & Lee, 2006). These studies suggest that childhood cancer survivors who lack effective coping and uncertainty management skills may be unable to reap- praise uncertainty and are at risk for the development of posttraumatic stress symptoms (PTSS) as a way of avoiding uncertainty when life demands become excessive (Lee, 2006). Health professionals who are aware of the increased risk of PTSS created by an inability to reappraise uncertainty can offer develop- mentally appropriate information, thereby clarifying the ambiguity of future survivorship and helping childhood cancer survivors manage the continual uncertainty in their lives (Santacroce & Lee, 2006).

Recognizing uncertainty and then providing contextual cues to reduce ambi- guity and increase understanding is one approach that nurses can use when communicating with patients to decrease uncertainty. Contextual cues pro- vide explanations of what patients will see, hear, and feel during procedures and tests, as well as what signs and symptoms they will experience at vari- ous points in their illness trajectory. Providing information and explanations about treatments and medications has been proposed to be the most impor- tant and frequent approach to reducing patient uncertainty (Mishel et al., 2002; Wineman et al., 1996). Galloway and Graydon (1996), who based their fi ndings on recently discharged colon cancer patients, noted that nurses could provide information to alleviate the uncertainty of being discharged to the home envi- ronment. Correspondingly, Mitchell, Courtney, and Coyer (2003) found that nurses provide benefi cial contextual cues and information to both families and patients on transfer from the intensive care unit to a general hospital fl oor. Families of patients who received clear information were more able to make decisions for patients, reported less anxiety, and were better able to provide emotional and physical patient support. Other effective methods for reduc- ing patient uncertainty can include encouraging communication with patients who have successfully managed their uncertainties. Weems and Patterson (1989) suggest sharing the uncertainties of waiting for a renal transplant with someone who has already received a transplant, or sharing uncertainties of

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  67

how to live with chronic obstructive pulmonary disease with someone who is successfully managing this chronic disease (Small & Graydon, 1993). This type of communication provides information to patients for structuring the stimuli and also functions as a source of social support.

Offering comprehensive information allows the nurse to function as a cred- ible authority, strengthening the stimuli frame by enhancing disease predict- ability and reducing symptom ambiguity. Righter (1995) used the UIT to describe the role of an enterostomal therapy (ET) nurse as a credible authority for the ostomy patient. She describes the ET nurse as providing structure and order to the experience of the new ostomy patient through clinical expertise and experience. The ET nurse reduces the ambiguity of the ostomy experience by providing information, counseling, and support. This facilitates ostomy patients’ adaptation to their newly altered perception of themselves and helps them regain a sense of control and mastery by creating order and predictability. Other ideas on changing clinical practice to reduce patient uncertainty include educational interventions delivered in person, by telephone, or by individual- ized patient information packets delivered through the mail (Calvin & Lane, 1999; Mishel et al., 2002). Research by Bailey et al. (2004) found that nurses can clarify information about treatment options that create confusion for men who have selected watchful waiting as their treatment choice for prostate can- cer. Nurses can answer patient questions about variations in prostate-specifi c antigen values, thus reducing uncertainty about both disease progression and future events. Understanding the meaning of laboratory values helped men sort out the confusion associated with mixed messages given to them by family who promoted aggressive treatment and urologists who promoted watchful waiting. Mishel et al. (2002) found that prostate cancer patients immediately postsurgery or during radiation therapy felt reassured when their questions were answered by a nurse, resulting in reduced anxiety and uncertainty. These men also expressed appreciation for the concern of a health professional and subsequently reported feeling less alone in their battle with cancer.

When considering the predictability of illness trajectories, Sexton et al. (1999) found that advanced practice nurses helped patients manage a diag- nosis of asthma by implementing nursing actions that helped patients predict and manage their asthma attacks. Similarly, among breast cancer survivors, unpredictable physical symptoms such as fatigue and arm problems, which may come and go, can create uncertainty about cancer recurrence (Clayton et al., 2006; Wonghongkul et al., 2006). Thus, providers—including advanced practice nurses—should try to communicate in a manner that fully explains existing symptoms and their relationship or lack thereof to cancer recurrence (Clayton, Dudley, & Musters, 2008).

Clinical journals are increasingly identifying patient uncertainty as an important part of the illness experience and provide suggestions for nursing actions to reduce patient uncertainty or facilitate a new outlook by focusing on choices and alternatives. Suggestions for managing uncertainty in clinical

68 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION

practice include work by Crigger (1996), who suggests that nurses can help women adapt positively to multiple sclerosis by shifting the emphasis from the management of physical disability to the management of uncertainty, thereby helping women achieve mastery over their daily lives. Similarly, Calvin and Lane (1999) suggested incorporating preoperative psychoeducational inter- ventions to reduce uncertainty as part of orthopedic preadmission visits. Other examples of using the UIT to develop and implement nursing interventions to reduce uncertainty and regain control in clinical settings are suggested by Allan (1990) for HIV-positive men; Sterken (1996) for fathers of pediatric cancer patients; Northouse, Mood, Templin, Mellon, and George (2000) for patients with colon cancer; and Sharkey (1995) for homebound pediatric oncol- ogy patients. Ritz et al. (2000) report another nursing intervention to manage uncertainty in clinical practice. These clinicians investigated the effect of fol- low-up nursing care by the advanced practice nurse after discharge of newly treated breast cancer patients. Six months after diagnosis, uncertainty was reduced and quality of life was improved. Despite this early work and subse- quent recommendations, uncertainty is not regularly assessed during routine nursing practice (Shaha et al., 2008). On the basis of the antecedent variables of UIT, Northouse et al. (2000) suggested that health professionals keep in mind individual characteristics of patients, social environments, and methods of ill- ness appraisal when caring for patients with colon cancer. They suggested that nurses provide patients with a framework of expectations about the physical and emotional illness trajectory associated with the fi rst year of managing this diagnosis. Thus, use of the UIT can help nurses recognize groups of patients and/or caregivers that may be at risk for increased uncertainty. For example, Sterken (1996) found that younger fathers did not understand the information given to them about their child’s treatment and disease patterns as well as older fathers, illustrating how cognitive capacity infl uences uncertainty. Santacroce (2002) found that African American parents of children newly diagnosed with cancer experienced greater uncertainty than White parents. She posits that past experiences with the healthcare system can impact parental uncertainty. These studies illustrate the diffi culty as well as the potential benefi t in using demo- graphic characteristics to identify persons at risk for heightened uncertainty.

Other investigators have explained how the theory can be applied to under- standing a clinical situation, clinical diagnosis, or clinical practice. For exam- ple, it is important to realize when increased uncertainty can place patients at risk for additional illnesses, such as recognizing that uncertainty is a major factor contributing to depression in patients with hepatitis C (Saunders & Cookman, 2005). Some clinical areas such as women’s health and cardiovascu- lar disease have been studied in depth. In the area of women’s health, Sorenson (1990) discusses the concepts of symptom pattern, event familiarity and con- gruency, cognitive capacity, structure providers, and credible authority, using examples from normal pregnancy to help nurses relate the theory to women who are experiencing diffi culty adapting to the uncertainties of pregnancy. For

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  69

women experiencing high-risk pregnancy, they preferred the coping strategy of avoidance as a means for managing uncertainty and preserving their sense of well-being (Giurgescu, Penckofer, Maurer, & Bryant, 2006). Suggestions are made about how perinatal nurses can help women accept impending mother- hood and utilize more effective coping mechanisms to reduce uncertainty and improve psychological well-being. Lemaire and Lenz (1995) applied the UIT to the condition of menopause. The stimuli frame for menopause was defi ned as the symptoms that indicate approaching menopause, including mood swings, hot fl ashes, dry skin, and memory changes. If women received factual informa- tion from a source deemed credible, such as nurses and healthcare providers, it was thought that familiarity with the event of menopause would be increased and uncertainty about this normal life event would be decreased. Consistent with predictions of UIT, uncertainty declined after receipt of understandable information delivered by a credible source, allowing women to construct meaning from the ambiguity and unpredictability of their symptoms sur- rounding the normal process of menopause. Similarly, Lemaire (2004) suggests that nurses who understand the uncertainty associated with the symptoms of endometriosis are better able to care for women experiencing this condition. Nursing actions such as providing informational material, offering referrals to support groups, and sharing electronic resources can help women better understand and manage the ambiguity and unpredictability of symptoms such as cramping, nonmenstrual pain, and fatigue. Other research has focused on understanding the ambiguity of symptoms associated with preterm labor (Weiss et al., 2002). Weiss et al. found that women lacked familiarity with the symptom pattern of preterm labor. They suggest that language used by women in describing preterm labor be incorporated into educational materials avail- able to all pregnant women to help them recognize preterm labor as differenti- ated from term labor. They stress that every expectant woman needs education about the cues to use in recognizing preterm labor.

In patients diagnosed with atrial fi brillation, the UIT can help nurses iden- tify patients at risk for increased uncertainty (Kang et al., 2004). Focusing on the antecedents of uncertainty, fi ndings showed that patients with more severe symptoms and those with less education experienced greater uncertainty, help- ing nurses to be more aware of which patients may be at risk. Other research has found that those patients who receive an implantable cardioverter defi bril- lator experience great uncertainty, never knowing when their arrhythmias may recur and when the device may “fi re” (Flemme et al., 2005). S. L. Carroll and Arthur (2010) studied uncertainty, optimism, and anxiety in patients receiv- ing their fi rst implantable defi brillator. Further, hospital nurses may have little time to prepare these patients for discharge as there is no need for further hos- pitalization postimplantation of the device. Therefore, out-patient clinic and offi ce nurses can provide key information and support to these patients, rec- ognizing that the high levels of uncertainty frequently experienced by these patients put them at risk for poorer quality of life. In another study Rydström

70 I I . M IDDLE RANGE THEOR IES READY FOR APPL ICAT ION

Dalheim-Englund, Segesten, and Rasmussen (2004) note the uncertainty that affects the whole family when a child has asthma, suggesting education for both parents and siblings about asthma as well as the impact of asthma on fam- ily dynamics. Further, these authors stress the importance of communicating to families that their nurse is approachable about both disease issues and family dynamics issues as part of holistic disease management. Similarly, for women diagnosed with fi bromyalgia, a recent study using the UIT as a guiding frame- work suggested that the information provided by health professionals helps reduce patient anxiety and uncertainty (Trivino Martinez, Solano Ruiz, & Siles Gonzalez, 2016).

Another approach to improving patient care is recognizing the importance of professional education on uncertainty to effect change in clinical practice. Wunderlich, Perry, Lavin, and Katz (1999) suggested that critical care nurses would benefi t from staff development sessions on how to address the uncer- tainty that patients experience during the process of weaning from mechani- cal ventilation. Dombeck (1996) commented that healthcare professionals need to increase their own tolerance for ambiguity and uncertainty to effectively listen to clients who are experiencing ambiguity and uncertainty. Similarly, Light (1979) noted that healthcare providers have been socialized to mini- mize uncertainty; this socialization may make it diffi cult to effectively address patient uncertainty until healthcare workers learn more about it (Baier, 1995). Recognizing the importance of integrating UIT into a management strategy for asthma patients, the American Nurses Credentialing Center’s Commission on Accreditation offered three credit hours for successful completion of a continu- ing education unit (CEU) quiz following the published article (Sexton et al., 1999) about coping with uncertainty. Other CEU offerings incorporating uncer- tainty theory have been offered following a case study on spiritual disequilib- rium (Dombeck, 1996) and an article on weaning a patient from mechanical ventilation (Wunderlich et al., 1999).

■ CONCLUSION

The Uncertainty in Illness theories have been used in multiple ways to inform clinician understanding of patients, families, and illness situations. Because uncertainty is an inherent aspect of illness-related experiences (Babrow & Kline, 2000), it is not surprising it has evolved and moved to other disci- plines such as the fi elds of medicine and health communication. Yet with such adaption comes different conceptualizations of uncertainty. In this chapter, uncertainty has been defi ned as the inability to determine the meaning of an illness-related event (Mishel, 1988). In medicine, uncertainty is defi ned as an individual’s subjective, perceived ignorance that encompasses sources, issues, and loci, which infl uence actions and produce psychological responses (Han, Klein, & Arora, 2011; Han, Klein, Lehman, et al., 2011). Furthermore, in the

4 . THEOR IES OF UNCERTA INTY IN I LLNESS  71

health communication literature, uncertainty is seen as feeling unsure about possible choices, decisions, and/or actions due to incomplete, inaccurate, or complex information (Dean, & Street, 2015; Shaha et al., 2008). While different, underlying each of these defi nitions is a lack of understanding of one’s situa- tion due to an illness event or complex health experience.

Clinical research guided by both the original UIT (1988) and the RUIT (1990) for those coping with both acute and chronic illnesses will continue to help identify appropriate nursing interventions for many types of illnesses and patients. Ultimately, the recognition of the importance of uncertainty can change clinical practice, allowing the development of nursing interventions that facilitate a positive patient adaptation to the illness experience.

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