Uncertainty in Illness Theory (UIT)

49

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

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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

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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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analysis of illness uncertainty, coping, hopefulness, and mood during

participation in a clinical drug trial. Journal of Neuroscience Nursing, 35(2), 100–106.

Winters, C. A. (1999). Heart failure: Living with uncertainty. Progress in Cardiovascular Nursing, 14, 85–91.

Wonghongkul, T., Dechaprom, N., Phumivichuvate, L., & Losawatkul, S. (2006).

Uncertainty appraisal coping and quality of life in breast cancer survivors. Cancer Nursing, 29(3), 250–257.

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infl uence of uncertainty in illness, stress appraisal, and hope on coping in

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uncertainty and stress during weaning from mechanical ventilation. Dimensions of Critical Care Nursing, 18(1), 8–12.

107

CHAPTER 6 Theory of Bureaucratic Caring

Marilyn A. Ray

In 1977, Leininger declared that “caring: [is] the essence and central focus of nursing” (p. 1). From an anthropological perspective, caring is one of the old- est and most universal expectations for human development and survival throughout human history. Caring is claimed by archeologists (besides the evo- lution of the brain) as paramount in human development (Ray, 1981b). Based on a philosophical analysis related to meaningfulness and understanding, I determined that, for nursing, caring and love are synonymous (Ray, 1981a, p. 32). Four decades ago, as a doctoral student researcher, my passion was the study of caring within hospitals as a way of knowing caring in nursing in prac- tice. I wanted to learn about the meaning of care and caring in the hospital culture, and embarked on a study focusing on the meaning and action of caring. My dissertation was a qualitative study that laid the foundation for the Theory of Bureaucratic Caring. This chapter about the Theory of Bureaucratic Caring includes: explication of the purpose of the theory; description of processes undertaken to generate the middle range theory; defi nition of the theoretical concepts; and identifi cation of uses of the theory in research and practice.

■ PURPOSE OF THE THEORY AND HOW IT WAS DEVELOPED

The middle range Theory of Bureaucratic Caring was discovered through description, analysis, and interpretation of the meaning of the phenomenon of caring in the complex institutional culture of the hospital. Interview data were analyzed from over 192 diverse healthcare professionals including nurses, phy- sicians, and allied health personnel as well as patients. Also included were fi eld notes or memos from participant observation of the nursing/social process in the hospital culture. This analysis prompted deep refl ective thinking about the meaning of the lived experience of caring and interpretation of patterns of culture or the organizational context from which the meaning was derived. The initial analysis led to the integration of data into a classifi cation system of institutional caring—psychological, practical, interactional, and philosophical (Ray, 1981b, 1984). Subsequently, substantive and formal grounded theories

Copyright Springer Publishing Company. All Rights Reserved. From: Middle Range Theory for Nursing, Fourth Edition DOI: 10.1891/9780826159922.0006

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

were discovered to articulate the fullness of the meaning of caring in the orga- nizational context. Qualitative data illuminated a paradox, juxtaposing the meaning of caring as humanistic, spiritual, and ethical with the bureaucratic system as political, economic, technological, legal, educational, and social– cultural. Through the use of Hegelian dialectical analysis of the thesis (car- ing) and antithesis (bureaucracy), a synthesis was articulated as the Theory of Bureaucratic Caring (Ray, 1981b, 1984, 2010a).

■ EVOLUTION OF THE THEORY OF BUREAUCRATIC CARING

Over three decades, with the research expertise of Dr. Marian Turkel and feder- ally funded grants using research approaches that drew on our growing under- standing of complexity sciences, testing of the Theory of Bureaucratic Caring was ongoing. We accomplished tool development using mixed methods to create valid and reliable professional and patient questionnaires, focusing on economic caring. Further data collection and analysis of the meaning of caring in organizational cultures in public, private, and military hospitals led to the determination that the Theory of Bureaucratic Caring demanded holographic expression with spiritual–ethical caring as the central essence. Many publications validated the theory as a middle range theory with strong potential for guid- ing practice and research (Coffman, 2014, 2018; Davidson, Ray, & Turkel, 2011; Gibson, 2008; Ray, 1987a, 1987b, 1989, 1997, 1998a, 1998b, 2010a, 2010b, 2010c, 2010d, 2010e, 2011, 2013a, 2013b, 2016; Ray & Turkel, 2010, 2012, 2014, 2015; Ray, Turkel, & Marino, 2002; Ray, Morris, & McFarland, 2013; Turkel, 2007; Turkel & Ray, 2000, 2001, 2004).

■ CONCEPTS OF THE THEORY

Bureaucratic Caring is spiritual–ethical caring emerging in bureaucracies. Bureaucracies are complex systems with political, legal, economic, technologi- cal, physical, educational and social–cultural dimensions. The central concept of the Theory of Bureaucratic Caring is spiritual–ethical caring. Spiritual–ethi- cal caring interconnects with the dimensional concepts gleaned and interpreted from data. Each of the concepts of the theory is briefl y defi ned.

Spiritual–Ethical Caring is defi ned as creativity, loyalty, faithfulness to spir- itual or religious traditions and is revealed in patterns of love, compassion, empathy, respect, and communication to facilitate moral choices for the good of self, persons, things, and the environment.

The Social–Cultural dimension is defi ned as values, beliefs, and attitudes regarding ethnicity, patterns of identity, or diverse social structures, such as family and communities that impact social structures, political, economic, legal, and technological factors in complex national or international systems.

6 . THEORY OF BUREAUCRAT IC CAR ING  109

The Physical dimension is defi ned as factors related to the physical, mental, and emotional states of being, health/illness, healing, and dying (or peaceful death) of patients or persons in organizational healthcare contexts.

The Educational dimension is defi ned as both formal and informal teach- ing–learning communicating caring processes and programs to improve the health, healing, and well-being of persons, families, communities, and organizations.

The Political dimension is defi ned as the energy patterns and communica- tive action associated with power, control, and authoritative behaviors, usually of leaders, administrators, and staff. Political relates to hierarchical systems, roles and their differentiation or stratifi cation, unions, and governmental infl u- ences that facilitate competition and cooperation in complex organizations.

The Economic dimension is defi ned as the exchange of goods, money, ser- vices, insurance systems, and healthcare laws, including an understanding of caring as interpersonal resources to appreciate and manage budgets and to maintain the fi nancial viability and fi scal management of an organization that interfaces with the larger community or social structure.

The Technological dimension is defi ned as nonhuman resources, such as machines and diagnostic instruments, pharmacologic agents, computers, elec- tronic health records (EHRs), smartphones, social media in the virtual world, and robots, and the ethical caring knowledge and skill needed to support per- sons, families, communities, organizations, and cultures.

The Legal dimension is defi ned as factors related to responsibility and accountability for rules, regulations, standards of practice, procedures, informed consent, rights to privacy, professional behaviors, insurance systems or laws, and issues that endeavor to facilitate social justice and stability in com- plex systems.

■ RELATIONSHIP AMONG THE CONCEPTS: THE MODEL

The model of the Theory of Bureaucratic Caring (Figure 6.1) is represented by a circle that shows the interrelationship among the central and surround- ing concepts. The theory model is intended to be holographic in the sense that the part and the whole are interconnected, “…everything is a whole in one context and a part in another—each part being in the whole and the whole being in the part” (Ray & Turkel, 2015, pp. 464–465). Spiritual–ethical caring is central to the model and relates to and with dimensional concepts (economic, political, legal, technological, educational, physical, social–cul- tural) at the periphery of the circle. Data revealed that the meaning of caring was not only spiritual and ethical but also was expressed by participants in the research and interpreted by the researcher as contextual—the interrela- tionship of caring with structural phenomena of complex organizations, the bureaucracy. “Caring [spiritual–ethical caring] is a relational pattern; it is the

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fl ow of nurses’ and others own experiences in the structural context of the organization [the bureaucracy]” (Ray & Turkel, 2015, p. 464). The arrows in the model extend outward from each of the dimensional concepts to show that Bureaucratic Caring connects beyond the organization, to the environ- ment or the social world or culture at large.

Bureaucracies are cultures; they are cocreated through the interactions of people within them, each with their specifi c cultural orientations, goals, norms, patterns of behaviors, rituals, professional practices, and languages. Spiritual– ethical caring thus is in relationship with the dimensional concepts descrip- tive of the organization—economic, political, technological, legal, physical, educational, and social–cultural (Ray & Turkel, 2015). As a living system, the bureaucratic organization manifests in different ways depending on the pro- cesses that are valued. Bureaucratic organizations thus are “complex, dynamic, relational, integral, informational, computational and emergent, and open to sets of possibilities” (Ray & Turkel, 2015. p. 465). Decisions are made in net- works of relationships that represent a simultaneous patterning of interacting parts. The Theory of Bureaucratic Caring (Coffman, 2014, 2018; Davidson, Ray, & Turkel, 2011; Ray & Turkel, 2015) emerges to refl ect the reality of what it means to care for persons in an organization in the contemporary Western and developing world.

Educational

Political

Economic

Technological

Legal Spiritual- ethical caring

Social- cultural

Physical

FIGURE 6.1 Holographic theory of bureaucratic caring. Source: With permission from Parker, M., & Smith, M. (2015). Nursing theories and nursing practice (4th ed.). Philadelphia, PA: F. A. Davis.

6 . THEORY OF BUREAUCRAT IC CAR ING  111

■ USE OF THE THEORY IN NURSING RESEARCH

The following presentation illuminates the diverse ways in which the Theory of Bureaucratic Caring was tested or used to guide research. Classifi cation systems, conceptual models, or further middle range theories emerged from this theory-guided research. For example, a classifi cation system, called an Institutional Caring Classifi cation System, was developed by Ray (1984). A conceptual model of Technological Caring, called Experiential and Principle- Based Ethics in Critical Care, was intuited from a phenomenological study of patients and nurses in the intensive care unit (Ray, 1987b). Clarifi cation of the ethical principles of benefi cence, justice, and autonomy emerged from this study. A theory of Refl ective Ethics emerged from a study in a critical care step- down unit (Ray, 1998a). Technological Caring was reinforced in the research of Wu and colleagues on the use of virtual technologies in a study of patients with cardiac disease comorbid with diabetes (Wu & Ray, 2016). From knowledge on economic caring reported by Ray (1981b, 1989), Turkel (1997) discovered Struggling to Find a Balance: A Grounded Theory of the Nurse-Patient Relationship Within an Economic Context. Ray and Turkel conducted research from 1995 to 2004 using Grounded Theory, phenomenological methods, and other mixed methods for the study of caring and the economics of caring in diverse public, private, and military hospitals (Davidson, Ray, & Turkel, 2011; Ray & Turkel, 2009; 2012; Turkel & Ray, 2000, 2001). Political caring was identifi ed in a study of reservists in the U.S. Air Force (USAF) regarding the expansion of the mili- tary TriCare health system (Ray & Turkel, 2001; Turkel & Ray, 2003). All of the research of Ray and Turkel led to further grounded theories: the Theory of Relational Complexity, the Theory of Relational Caring Complexity; and a Theory of Workplace Redevelopment (Ray, Turkel, & Marino, 2002). The eco- nomic caring research of Ray and Turkel was enhanced by theoretical testing and tool development to understand more fully the meaning and the statistical signifi cance of the economics and politics of caring.

Many researchers were interested in theory-guided research and practice using the Theory of Bureaucratic Caring. In 1997, Valentine applied the the- ory in her study of economics and caring. Prestia (2016a) followed through with an application of Ray’s ideas (1997) emerging from a phenomenological study of caring in nursing administration; Prestia studied caring strategies for living leadership presence in nursing administration. Nyberg (1990) applied the Theory of Bureaucratic Caring to facilitate understanding, research and development of nursing economics with nurse administrators and in the orga- nizational culture. Eggenberger (2011) used the theory to guide a qualitative research related to charge nurses on the front line of practice. Conroy (2013) applied the Theory of Bureaucratic Caring in a study of the effect of the orga- nizational culture on implementation of evidence-based practice and how the staff assigns a value to improvements in nursing practice. The Theory of Bureaucratic Caring was incorporated by Prestia (2016b) into her dissertation

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

research, a phenomenological study of chief nursing offi cers in the contin- ued practice of nursing leadership. In the USAF Medical Service, a research study was conducted by Potter (2015) using the Theory for Nurse-Directed Primary Care of patients with type 2 diabetes resulting in quality improve- ments in clinical health and healing and sizable economic outcomes. In the Veterans Administration, Lusk (2015) conducted a mixed method study using the Theory of Bureaucratic Caring to compare the knowledge, skills, and atti- tudes of newly hired nursing staff before and after the implementation of a quality and safety competency-based nursing orientation program.

Overall, the Theory of Bureaucratic Caring has provided substantive guid- ance for researchers wishing to focus on systems of care and those who are employed in those systems. It is a middle range theory that shifts attention to macrosystem perspectives, linking institutional culture, while considering the interplay of macrosystems with microsystems, like caring. The theory provides a structure for researchers to study the meaning of caring in institutional nurs- ing and healthcare practice.

■ USE OF THE THEORY IN NURSING PRACTICE AND EDUCATION

Nursing practice addresses the needs of patients, nurses, and administrators as well as an understanding of the context within which nursing practice occurs. The challenge in nursing practice is the integration of knowledge gleaned from nursing education and experience, which should align with the philoso- phy, vision, and values that nursing has adopted. The Magnet Recognition Program® has been established to achieve nursing excellence by incorporat- ing theory-guided or conceptual professional practice models to transform nursing and healthcare (Turkel, 2004). Theory-guided practice encompasses the why of nursing through ways in which practitioners of nursing have inte- grated their knowledge and understanding of what makes things work—the pedagogy, philosophy of caring, health, and social–cultural sciences to inform the art of nursing. The philosopher Hans-Georg Gadamer remarked that we, as human beings are always theorizing—we are meaning-making people who are always seeking to understand—trying to make sense out of relationships and things of this world (van Manen, 2014). The art of practice, thus “. . . serves to foster and strengthen the embodied ontology [way of being], epis- temology [ways of knowing], and axiology [ways of valuing what is valuable or ethical] of thoughtful and tactful action” (van Manen, 2014, p. 15). The fol- lowing highlights ways in which the Theory of Bureaucratic Caring is being used to guide nursing education as well as nursing, healthcare, and organi- zational practice.

O’Brien (2008) incorporated the core principles of the Theory of Bureaucratic Caring in her project to orient new public health nursing consultants in a major

6 . THEORY OF BUREAUCRAT IC CAR ING  113

state public health nursing system (Personal communication, 2008). In a cor- rectional facility for adolescents in Georgia, McCray-Stewart used the theory to improve the care of young detainees and reduce recidivism (Personal com- munication, 2008). In 2012, Iowa Health (three hospitals), in Des Moines, Iowa, adopted the Theory of Bureaucratic Caring to guide interprofessional practice (Iowa Health) and as the theoretical foundation for Magnet recognition status to become a center of excellence.

Elevating a successful innovation of an interprofessional practice model is focused on a commitment by leaders to all stakeholders. Leaders must be cog- nizant of how a system can continue to form or enhance relationships with its members in current and projected environments. A signifi cant goal of achieving the status of a Magnet facility employs both the spread or horizontal diffusion of an idea, such as a nursing theory or model of caring, and scale or centralized action to implement a single system of excellence for nursing and other dis- ciplinary practices across a whole organization (Bar-Yam, 2004; Martin, 2017; Turkel, 2004). Collaboration of this magnitude for policy development takes knowledge of theory, and a theory-guided effort to determine its impact on a complex organization and multidisciplinary practice. The collaboration takes a deep understanding of relationships and caring communication, especially in a complex bureaucratic culture and with people who may continue to embrace an individualized professional culture or belief system. The process of devel- oping a model using the middle range Theory of Bureaucratic Caring in the Iowa Health System took a commitment by nurse leaders and others to make things work (Bar-Yam, 2004). Inspiring a collection of diverse healthcare pro- viders from varying disciplines to undertake whole system change focused on unifi ed healthcare is a challenge but the Iowa Health System embraced the challenge.

Within nursing education, the Nevada State College under the leadership of Dr. Sherrilyn Coffman (2014) from 2007 to 2014, applied, in part, the Theory of Bureaucratic Caring for the development of a curriculum model for the Bachelor of Science in Nursing program. In the nursing administration pro- gram at the Capital University in Ohio, Burkett (2016) used the theory to guide administrative course development. Johnson (2015) developed a conceptual framework applying the Theory of Bureaucratic Caring for advanced practice nurses as primary care providers using a new approach—making house calls with the homebound population to meet their healthcare needs. The Theory of Bureaucratic Caring is currently being used in nursing education at the National University in Bogota, Colombia, and the University of Santiago in Santiago, Chile.

The Theory of Bureaucratic Caring is being applied in primary nursing practice by the USAF Nurse Corps to improve the care of patients with type 2 diabetes (Potter, 2015). Creation of an Interdisciplinary Professional Person- Centered Practice Model in the USAF is in process.

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

■ CONCLUSION

The Theory of Bureaucratic Caring originated from qualitative research focused on caring in a complex organizational culture. It was published fi rst as a dissertation (Ray, 1981b) and appeared in the literature in 1989 and in subsequent publications noted throughout this chapter (Coffman, 2014, 2018; Ray, 2001, 2010a, 2010e; Ray & Turkel, 2010, 2012, 2014, 2015). The theory sym- bolizes a dynamic structure of caring that was synthesized from the dialectic of caring as humanistic, social, educational, ethical, and religious/spiritual (elements of humanism and caring), and the antithesis of caring as economic, political, legal, and technological (elements of bureaucracy) into a new syn- thesis—the Theory of Bureaucratic Caring (Ray, 1989, 2010a, 2010b, 2010c, 2010d, 2010e). The interplay between and among the dimensions highlighting spiritual–ethical caring and the bureaucratic system as holographic or emer- gent showed that the whole is in the part and the part is in the whole; every- thing is an unbroken whole (Bohm, 2002; Coffman, 2014). Humanistic caring and the elements of the bureaucracy are value-added. Interactions and sym- bolic meaning systems are formed and reproduced from the construction of dominant values held within nursing and indeed, other professions, includ- ing patients, and the organization. A hospital, community health, or a health- care system is a living organization. By understanding and incorporating the Theory of Bureaucratic Caring, nurses bring caring into being that makes a human community and an organization edifying to our spiritual well-being and intellectual lives.

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119

CHAPTER 7 Theory of Self-Transcendence

Pamela G. Reed

A central focus of nursing is in understanding and facilitating the human capacity for well-being in the context of diffi cult health-related experiences. The nursing Theory of Self-Transcendence was created from a developmen- tal perspective of human–environment processes of health. The word develop- mental is used in the theory to emphasize inherent change processes that are ongoing, innovative, and context-related while also acknowledging inevitable changes that are random or decremental. Self-Transcendence Theory origi- nated from an interest in understanding how people transcend adversity and the relationship among psychosocial development, mental health, and well- being. The theory is applicable to individuals across the life span regarding challenging life experiences, with supporting empirical fi ndings from research with those in adolescence, adulthood, aging, and end of life.

■ PURPOSE OF THE THEORY AND HOW IT WAS DEVELOPED

According to the intermodern philosophy of nursing science (Reed, 2011), nurs- ing theories most broadly are open systems of knowledge that incorporate var- ious ways of knowing including empirical, ethical, and practice-based sources. Middle range theory in particular is a structure and process for building nursing knowledge through inquiry and practice. Knowledge from research and prac- tice is organized into theories for creative applications with people who need nursing care. The purpose of the middle range Theory of Self-Transcendence is to provide a framework for inquiry and practice regarding the promotion of well-being in the midst of diffi cult life situations. Research and practice using Self-Transcendence Theory may generate new discoveries about the processes by which people attain well-being.

The idea for a Theory of Self-Transcendence was infl uenced by three major events in the history of science, the history of nursing, and my own professional history. First, the 1970s life-span movement in developmental psychology provided philosophical perspective and empirical evidence that the potential for developmental change exists across the life span, beyond childhood and

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adolescence, into adulthood, and throughout the processes of aging and dying (Reed, 1983). Research fi ndings indicated that developmental change was infl uenced less by chronological age or passage of time and more by normative and non-normative life events and the accruement of life experiences.

Second, postulations by the scholar Martha Rogers (1970) about the nature of change in human beings provided further inspiration for development of the theory (Reed, 1997b). Rogerian ideas were congruent with life-span principles of development. Philosophical views include the pandimensionality of human beings and the human potential for healing and well-being. Pandimensionality refers in part to various dimensions, known and as yet unknown, about human beings and their environment, and to the capacity to expand personal bound- aries in various ways. Several nursing theories were also foundational to the Theory of Self-Transcendence.

Third, this theory was motivated by my clinical nurse specialist practice experiences in applying developmental theories in child and adolescent psy- chiatric–mental healthcare. Successful approaches to fostering mental health and well-being required in-depth understanding of patients’ biopsychoso- cial developmental processes and the strengths they may obtain through development.

A detailed explanation of how these elements came together in the devel- opment of Self-Transcendence Theory is described in Reed (1991b). The pre- dominant approach was deductive reformulation, which incorporated various strategies of theory development from philosophical, theoretical, empirical, and practice-based sources. The underlying assumptions, concepts, and relation- ships among the concepts involved in the theory development are described in the next two sections. Research and practice, presented in later sections, also infl uence development and ongoing refi nement of the theory.

■ CONCEPTS OF THE THEORY

The concept of the Theory of Self-Transcendence derived in part from two major assumptions. First, it is assumed that people are integral with their environment and are pandimensional, as postulated in Rogers’s (1980, 1994) Science of Unitary Human Beings. This suggests that human beings may be capable of an awareness that extends beyond physical and temporal dimen- sions (Reed, 1997a). Using current scientifi c methods, this is measurable in reference to everyday experiences of expanding one’s boundaries by reach- ing deeper within the self and reaching out to others, to nature, to one’s god, or other sources of transcendence. An important point is that boundaries not dimensions are transcended. Contrary to views of self-transcendence as mean- ing a separation from self, others, and the environment, in this theory self-tran- scendence refers to connections with self, others, and the environment.

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The second assumption is that self-transcendence is a developmental imper- ative, meaning that it is a human resource that demands expression as do other developmental processes such as walking in toddlers, abstract reasoning in adolescents, and grieving in those who have suffered a loss. These resources are a part of being human and facilitate potential for well-being. As such, the person’s participation in self-transcendence is integral to well-being, and nurs- ing has a role in facilitating this process.

Self-Transcendence

Self-transcendence is the central concept of the theory. It refers to the capacity to expand personal boundaries in many ways, examples of which are as fol- lows: intrapersonally (toward greater awareness of one’s philosophy, values, and dreams), interpersonally (to relate to others and one’s environment), tem- porally (to integrate one’s past and future in a way that has meaning for the present), and transpersonally (to connect with dimensions beyond the typi- cally observable world). Self-transcendence is a characteristic of developmen- tal maturity in terms of an enhanced awareness of the environment and an orientation toward broadened perspectives about life. It is expressed and mea- sured through life perspectives and behaviors that refl ect expansion of per- sonal boundaries.

Developmental Theories

Neo-Piagetian theories about development in adulthood and later life were infl uential in formulating the concept of self-transcendence. Beginning in the 1970s, life-span development researchers discovered postformal patterns of thinking in older adults that extended beyond Piaget’s formal operations, once thought to be the fi nal stage of cognitive development. Life-span devel- opmental theories on social–cognitive development extended Piaget’s origi- nal theory on reasoning, which had identifi ed formal operations (abstract and symbolic reasoning) in youth and young adulthood as the apex of cognitive development. Researchers identifi ed postformal stages from older adults’ continued social and cognitive development well into later life beyond the phase of formal operations, for example, Arlin’s (1975) problem-fi nd- ing stage, Riegel’s (1976) and Basseches’s (1984) dialectic operations, and Koplowitz’s (1984) unitary stage. Researchers found that this mature reason- ing was more contextual, more pragmatic, more spiritual, and more tolerant of ambiguity and paradoxes in life than was the reasoning of earlier devel- opmental phases (e.g., Commons, Demick, & Goldberg, 1996; Sinnott, 1998, 2011). The person using this mature form of reasoning does not seek abso- lute answers to questions in life but rather seeks meaning from perspectives beyond the immediate situation that integrate moral, social, and historical

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dimensions. A perspective of relativism from seeing multiple, sometimes confl icting views is balanced by the ability to make a commitment to one’s beliefs.

Self-transcendence was conceptualized in reference to these views, with goals more in line with Erikson’s generativity and ego integrity than with self-absorbed strivings for identity and intimacy characteristic of earlier devel- opmental phases (Sheldon & Kasser, 2001). Self-transcendence is expressed through various behaviors and perspectives such as sharing wisdom with oth- ers, integrating the physical changes of aging, accepting death as a part of life, having an interest in helping others and learning about the world, letting go of losses, and fi nding spiritual meaning in life.

Nursing Theories

Self-transcendence is a concept relevant to nursing. Themes of self-transcen- dence are evident in other nursing theories. For example, in Parse’s (1992, 2015) paradigm of human becoming, cotranscending is a major theme underlying the philosophical assumptions of her theory and “inspiring transcendence” is an exemplary nursing practice. Newman’s (1994) theory of health as expand- ing consciousness postulates a transcendence of time and space as one reaches beyond illness to develop an awareness of one’s patterns, self-identity, and higher level of consciousness. Although all of these theorists present unique views of transcendence, they generally share the idea of expanded awareness beyond the immediate or constricted views of oneself and the world to trans- form life experiences into healing (Reed, 1996). More recently, developmental psychologists studying self-transcendence suggested it is a universal concept related to well-being in adulthood and aging, as a way of extending personal boundaries outward to others and the community (Hofer et al., 2016).

Nursing Philosophy

Self-transcendence is also congruent with philosophical views of nursing. Sarter (1988) identifi ed the term as one of the central themes in the philosophical foundations of nursing. Newman’s (1992) unitary–transformative paradigm presents human beings as embedded in an ongoing developmental process of changing complexity and organization, a process integrally related to well- being. Furthermore, self-transcendence is an example of Reed’s (1997a) ontol- ogy of nursing, where nursing most basically is defi ned as a self-organizing process inherent among human systems that is related to well-being. Maslow (1969) is frequently cited for his concept of self-transcendence, but his con- ceptualization diverges from nursing by his view of self-transcendence as an elevation or a separation of self from the environment. It is an awareness of person–environment connections when fragmentation threatens one’s well- being (Reed, 1997b).

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Well-Being

A second major concept of the theory is well-being. Well-being is a sense of feeling whole and healthy, in accord with one’s own criteria for wholeness and health. Well-being may be defi ned in many ways, depending upon the indi- vidual or patient population. Indicators of well-being are as diverse as human perceptions of health and wellness, for example, life satisfaction, positive self- concept, hopefulness, happiness, morale, self-care, and sense of meaning in life.

Self-transcendence, as a basic human pattern of development, is logically linked with positive, health-promoting experiences and is therefore a corre- late if not a predictor and resource for well-being. Well-being is a correlate and outcome of self-transcendence. Theoretical analyses and empirical studies have consistently supported this conceptualization of self-transcendence as a contributor to well-being (Lundman et al., 2010; McCarthy, 2011; Reed, 2009; Teixeira, 2008).

Vulnerability

Another key concept of the theory is vulnerability. Vulnerability involves awareness of personal mortality or risk to one’s well-being. It is theorized that self-transcendence, as a developmental capacity (and perhaps as a sur- vival mechanism), emerges naturally in health-related experiences and life events that confront a person with issues of mortality and immortality. Life events that heighten one’s sense of mortality, inadequacy, or vulnerability can—if they do not crush the individual’s inner self—motivate developmental progress toward a renewed sense of identity and expanded self-boundaries (Corless, Germino, & Pittman, 1994; Erikson, 1986; Frankl, 1963; Marshall, 1980). Examples of these life events include serious or chronic illness, dis- ability, aging, parenting, child rearing, family caregiving, loss of a loved one, career, and other life crises. Self-transcendence is evoked through such events and may enhance well-being by transforming losses and diffi culties into growth experiences (Reed, 1996).

■ RELATIONSHIPS AMONG THE CONCEPTS: THE MODEL

The model of the Theory of Self-Transcendence is presented in Figure 7.1. Four basic sets of relationships among the concepts are proposed by the theory. First, there is a relationship between the experience of vulnerability and self-tran- scendence such that increased levels of vulnerability, as brought on by health events, for example, motivate increased levels of self-transcendence. Further, this relationship may be moderated by personal and contextual factors, par- ticularly at high levels of vulnerability.

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A second relationship exists between self-transcendence and well-being. This relationship is direct and positive. For example, self-transcendence relates positively to sense of well-being and morale, and self-transcendence relates negatively to depression as a “negative” indicator of well-being. This relationship represents more than a coping process; it is the integration or transcending of a current situation to move forward toward a changed life rather than simply a return to previous perspectives and behaviors (Willis & Grace, 2011).

Third, self-transcendence functions as a mediator between experiences of vulnerability and well-being. Research fi ndings indicate that self-transcen- dence is a mechanism that helps explain the relationship between vulnerabil- ity and well-being. Self-transcendence may mediate the effects of vulnerability on well-being, with vulnerability experienced as, for example, illness distress; lack of optimism, hope, or power; uncertainty; death anxiety. Without self- transcendence, vulnerability could result in diminishing rather than sustaining well-being. Several studies discussed later provide empirical support for this mediator hypothesis. Self-transcendence, then, may be an underlying process that explains how well-being is possible in diffi cult or life-threatening situa- tions that people endure.

Fourth, personal and contextual factors may also have a role in this healing process. A wide variety of personal and contextual factors and their interac- tions may moderate or otherwise infl uence the process of self-transcendence as it relates to well-being. Examples of these factors are age, gender, cogni- tive ability, health status, past signifi cant life events, personal beliefs, family

Self-Transcendence

Personal and

Contextual Factors

Vulnerability Well-Being

FIGURE 7.1 Self-Transcendence Theory.

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support, and sociopolitical environment. These factors can enhance or dimin- ish the strength of the three key variables and their relationships. For example, advanced age or education may potentiate the relationship between self-tran- scendence and well-being. The idea that personal and contextual factors have a role in the theory derives from Rogers’s (1980) integrality principle about the ongoing person–environment process over the life span.

The relationships posited by Self-Transcendence Theory identify areas for research and, with adequate empirical support, for nursing interventions to facilitate well-being in situations of increased vulnerability. From my nursing perspective, which focuses on understanding inherent resources that foster human well-being, I conceptualized self-transcendence as an independent vari- able—a contributor to and predictor of well-being outcomes—rather than as the dependent or outcome variable. Therefore, nursing interventions that support the person’s inner resource for self-transcendence may focus directly on facilitat- ing self-transcendence as it mediates the relationship between vulnerability and well-being, or as it directly relates to well-being. Interventions may also address infl uential personal or contextual factors that directly relate to vulnerability or to self-transcendence, or that moderate the relationships between vulnerability and self-transcendence, and between self-transcendence and well-being (Figure 7.1).

■ USE OF THE THEORY IN NURSING RESEARCH

Research results to date indicate that self-transcendence is a resource that accompanies serious life experiences that intensify one’s sense of vulnerability or mortality. Self-transcendence is a process of expanding personal boundar- ies that helps people attain some sense of well-being in the context of diffi – cult health situations. Findings also support the theorized direct relationship between self-transcendence and many indicators of well-being across groups of study participants facing a wide variety of health experiences.

The Self-Transcendence Scale

The Self-Transcendence Scale (STS; Reed, 2009) has been used in much of the research concerning the theory. However, other measures may be used—and, in fact, qualitative approaches have been used—to study self-transcendence. The STS is a unidimensional instrument with 15 items measured on 4-point Likert-type scaling. It originated from a 36-item instrument, the Developmental Resources of Later Adulthood (DRLA) scale (Reed, 1986, 1989), which measured the level of developmentally based psychosocial resources refl ective of devel- opmental maturity. The DRLA was constructed from an extensive review of theoretical and empirical literatures on adult development and aging, selected nursing conceptual models and life-span theories, and clinical practice in psy- chiatric–mental health nursing.

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The STS was developed around a self-transcendence factor that explained half of the variance in the DRLA with good internal consistency. The STS factor con- sisted of items describing various behaviors and perspectives by which an indi- vidual may expand personal boundaries inward and outward, and temporally. The STS has demonstrated reliability (internal consistency) and validity (con- tent, construct) across studies of various populations and health experiences. It is brief and easy to administer either as a questionnaire or in an interview format. Many researchers and graduate students have used the instrument in studying self-transcendence as it relates to various health experiences and outcomes.

Initial Research

The initial research used to build the Theory of Self-Transcendence focused on older adults, both well and those hospitalized for psychiatric treatment of depression, as a group more likely to be facing vulnerability or end-of-life issues than younger adults. Correlational and longitudinal studies (Reed, 1986, 1989) were designed to examine the nature and signifi cance of the relation- ship between self-transcendence and mental health outcomes, particularly an inverse relationship between self-transcendence and depression. Quantitative and qualitative fi ndings in a study of oldest-old adults, aged 80 to 100 years, also produced the same results (Reed, 1991a). In addition, four conceptual clus- ters representing different aspects of self-transcendence were generated from a content analysis: generativity, introjectivity, temporal integration, and body transcendence. Elders who scored high on depression refl ected weak patterns in these four areas, particularly in body transcendence, inner-directed activi- ties, and positive integration of present and future.

Similar results were generated later, in research by Haugan, Hannssen, and Moksnes (2013) in a study of self-transcendence in 202 nursing home older adult residents. Their STS results could be empirically organized into two factors, intra- personal and interpersonal, which also included temporal and transpersonal items, providing further support for Self-Transcendence Theory that posited expanding personal boundaries as a correlate of well-being in later adulthood.

Basic and Practice-Based Research by Coward

Doris Coward, who as a doctoral student studied with Reed, continued research into self-transcendence with a focus on middle-aged adults confronting their mortality through serious illness, advanced cancer, and AIDS. Coward (1990, 1995) initially studied the lived experience of self-transcendence in women with advanced breast cancer. Results from her phenomenological study were consistent with fi ndings from quantitative studies. Self-transcendence per- spectives were salient in this group, which had a heightened awareness of personal mortality. Self-transcendence was expressed in terms of reaching out beyond self to help others, to permit others to help them, and to accept the present, unchangeable events in time. This research validated Reed’s (1989)

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quantitative measure of self-transcendence. In subsequent phenomenological research, Coward and Lewis (1993) explored self-transcendence in women and men with AIDS. Despite increased fear and sadness at the prospect of death, all participants indicated self-transcendence perspectives, which in turn helped them fi nd meaning and achieve emotional well-being. Findings from a study of 107 women with stages III and IV breast cancer, in which structural equation modeling was used to analyze responses, indicated that self-transcendence had a signifi cant and direct positive effect on emotional well-being by mediat- ing the effect of illness distress on well-being (Coward, 1991).

Coward (1996) also studied healthy adults, who ranged in age from 19 to 85 years. She was interested in extending the Theory of Self-Transcendence by examining its salience in a group of adults who were not as actively confronted with end-of-life issues as other seriously ill populations. Self-transcendence was again found to be a signifi cant and strong correlate of well-being indi- cators, namely coherence, self-esteem, hope, and other variables assessing emotional well-being. Coward concluded that while her research supported the hypothesized relationship between self-transcendence and mental health variables, the fi ndings from her sample of healthy adults suggested that self- transcendence may surface at times in the life span other than end of life, as proposed by Victor Frankl (1969). Coward’s work helped expand the scope of the theory to other age groups where self-transcendence may be salient. Nevertheless, her results do not necessarily dispute the idea that some aware- ness of human mortality is integral to self-transcendence. Awareness of mor- tality is a basic characteristic of the human condition among both healthy and ill adults, and may emerge slowly from the accumulation of life experiences as well as suddenly by a health crisis event.

Intervention research by Coward and Kahn (2004, 2005) focused on the expe- riences and functions of self-transcendence in women newly diagnosed with breast cancer. Self-transcendence practices and perspectives were particularly effective in helping women to resolve spiritual disequilibrium often experi- enced after diagnosis of breast cancer (Coward & Kahn, 2004). In their 2005 study, the investigators compared a traditional community cancer support group with a Self-Transcendence Theory–based group on outcomes regarding the experiences of self-transcendence and physical and emotional well-being. Women in the self-transcendence treatment group were able to attain a bet- ter sense of community with their support group. However, the most striking fi nding was that women in both groups had self-transcendence experiences that sustained them through the diagnosis and treatment of their illness. They expressed themes of outward, inward, and temporal expansion of self-bound- aries such as reaching out for support and information, fi nding inner strength to endure, and constructing meaning out of past experiences and future hopes. The authors interpreted this fi nding as support for Reed’s theoretical idea that the capacity for transcending an adverse event is a universal trait that motivates expansion of one’s conceptual boundaries in multiple and benefi cial ways.

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Research by Reed and Colleagues

In an attempt to examine the theory in a group of adults that was healthy and younger than the elders typically studied, Ellermann and Reed (2001) found evidence of self-transcendence in middle-aged adults in the forms of parenting, self-acceptance, and spirituality as expressions of expanding self-boundaries related to mental health. Their results indicated a strong inverse relationship between self-transcendence and level of depression in middle-aged adults, particularly among women.

Decker and Reed (2005) studied self-transcendence and moral reasoning within the context of several contextual and developmental factors to bet- ter understand end-of-life treatment preferences among older adults. Self- transcendence was found to be signifi cantly and positively related to a higher level of reasoning called integrated moral reasoning, which includes both the autonomous and social domains of moral decision making. This fi nding was expected based on life-span developmental theory on adult cognition. Self- transcendence did not relate signifi cantly to the desired level of aggressiveness of end-of-life treatment, although investigators argued that more research is needed into the role of self-transcendence and end-of-life decisions. The results help explain why reasoning about end-of-life treatment options may involve a complex and integrated approach.

Runquist and Reed (2007) studied correlates of well-being in 61 homeless men and women. Self-transcendence coupled with positive physical health status were identifi ed as independent correlates of well-being, explaining a signifi cant 60% of the variance in well-being in this sample. Self-transcendence held the larger and more signifi cant correlation with well-being. These fi nd- ings suggest that interventions to foster well-being among homeless persons include those that support self-transcendence as well as physical health.

Research by Other Investigators

Other research conducted over the past 25 years has provided support for the Theory of Self-Transcendence. In most but not all of the quantitative studies reported here, researchers measured self-transcendence with Reed’s (2009) STS. In the case of qualitative studies, researchers worked from a conceptu- alization of self-transcendence congruent with Reed’s theory. Research has focused on various populations and health events.

Chronic Physical Illness, Mental Health, and Aging

Several researchers in addition to Reed have studied self-transcendence in older adults in reference to chronic and serious illness and mental health and well-being. The various indicators of well-being found to be associated with self-transcendence, are bolded in the following research descriptions.

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Walton, Shultz, Beck, and Walls (1991) explored self-transcendence using a 58-item scale based on Peck’s (1968) developmental stages of old age. They identifi ed a signifi cant inverse relationship between self-transcendence and loneliness among 107 healthy older adults.

Billard (2001) examined the role of self-transcendence in the well-being of aging Catholic sisters for her doctoral research. Specifi cally, she combined Reed’s (1987) Spiritual Perspective Scale with Reed’s (1991a) STS to measure the concept of spiritual transcendence and found that spiritual transcendence, along with selected personality and demographic factors, contributed signifi – cantly to explaining emotional intelligence in a sample of 377 elder Catholic sisters.

In suicide research with 35 older adults hospitalized for depression, Buchanan, Farran, and Clark (1995) found that self-transcendence was inte- gral to older adults coping with the changes in later life. Desire for death and self-transcendence (as measured by the STS) were signifi cantly and inversely related. Klaas (1998) studied self-transcendence and depression in 77 depressed and nondepressed elders, fi nding self-transcendence was negatively correlated with depressive feelings and positively correlated with meaning in life in these groups. Similarly, in a study of Taiwanese older adults residing in nursing homes, self-transcendence was negatively correlated with depressive symp- toms (Hsu, Badger, Reed, & Jones, 2013).

The capacity to engage in activities of daily living and self-transcen- dence was found to be signifi cantly positively related in two studies, one with 88 chronically ill elders (Upchurch, 1999) and another with older African Americans where Upchurch and Mueller (2005) found that self- transcendence was signifi cantly and positively related to the ability to carry out instrumental activities of daily living (IADLs). Self-transcendence was interpreted as a developmental strength infl uential in explaining why some elders continued to remain independent while others did not, regardless of health status. Related to IADLs, investigators Upchurch and Mueller (2005) recommended that caregivers can support older adults’ self-care capacity by approaches that promote self-transcendence. On a similar theme, other investigators suggest continued research into the possible relationship between self-transcendence and medication adherence (N. F. Thomas & Dunn, 2014).

Walker (2002) measured self-transcendence and mastery of stress in test- ing his theory of transformative aging. He proposed that stressful events can bring about transformative change that enables the person to deal with the losses and challenges that accompany aging. Self-transcendence was found to be signifi cantly and positively related to mastery of stress and signifi cantly inversely related to stress of aging. His fi ndings have implications for engag- ing the resource of self-transcendence to assist middle-aged and older adults in mastering stress and existential anxiety over the aging process.

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Self-transcendence was found to be related to mediate and reduce stresses of progressive diseases of multiple sclerosis and systemic lupus erythematosus, prostate cancer, and oral cancer, respectively (H.-C. Chen 2012; Chin-A-Loy & Fernsler, 1998; Iwamoto, Yamawaki, & Sato, 2011). Similarly, in a study of older women living with rheumatoid arthritis, Neill (2002) found that transcendence of self-boundaries and personal transformation represented a process of living successfully with a chronic illness.

In a correlational study of oldest-old adults, Swedish researchers (Nygren et al., 2005) found signifi cant, positive relationships of moderate magnitude between self-transcendence and several mental and physical health outcomes including resilience, sense of coherence, and purpose in life. Their results overall indicated that oldest-old adults were capable of experiencing levels of self-transcendence and other positive factors comparable to those in younger adults, although this capacity may differ between men and women, indicating the need for further research into gender differences. Several researchers have studied inner strength as a variable very similar to self-transcendence in its defi nition and in a way it is proposed to promote well-being in oldest-old men and women, that is, in terms of increased resilience, purpose in life, and sense of coherence (Lundman et al., 2010; Viglund, Jonsén, Strandberg, Lundman, & Nygren, 2014). One major conclusion was that while oldest-old individuals are more vulnerable to illness than are younger people, they also may have increased inner strength to help them not only cope but fi nd joy in later life (Moe, Hellzen, Ekker, & Enmarker, 2013).

Life-Threatening Illness in Adults

Considerable research on self-transcendence has focused on people who have life-threatening or life-limiting illness. Results from these studies provide con- sistent support for Self-Transcendence Theory. Examples of this research include individuals with cancer, HIV/AIDS, and other life-threatening illnesses.

CANCER

In a phenomenological study of eight women who had completed breast cancer therapy, Pelusi (1997) found that surviving breast cancer very much involved self-transcendence, expressed as setting life priorities, fi nding meaning in life, and looking within self. Similar fi ndings occurred in a study by Kinney (1996), who reported on her own journey through breast cancer. A process of listening to and trusting one’s inner voice facilitated transcendence. Self-transcendence in turn was central to the reconstruction of self. Self-transcendence also was signifi cant in adjusting to recurrence of breast cancer (Sarenmalm, Thorén- Jönsson, Gaston-Hohansson, & Öhlén, 2009).

In its mediating role, self-transcendence alone partially mediated the rela- tionship between optimism and the outcome of emotional well-being in a

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group of 93 women receiving radiation treatment for breast cancer (Matthews & Cook, 2009). Farren’s (2010) study of 104 breast cancer survivors produced fi ndings that self-transcendence was a signifi cant mediator in two relation- ships—between power (knowing participation) and quality of life and between uncertainty and quality of life. Uncertainty reduces quality of life by reducing self-transcendence. Farren used Reed’s theory to describe self-transcendence as a profound awareness of one’s wholeness while having awareness of fl uc- tuations in one’s human–environmental fi eld patterns.

HIV/AIDS

Self-transcendence and quality of life were studied in 46 HIV-positive adults by Mellors, Riley, and Erlen (1997). Data analysis revealed a signifi cant mod- erate positive relationship between self-transcendence and quality of life for the group, particularly for those who were the most seriously ill. Similarly, Stevens (1999) found self-transcendence and depression to be signifi cantly and inversely related in young adults with AIDS.

Results from other research also attest to the capacity for seriously ill indi- viduals to transcend their illness. Persons with AIDS were able to transcend the suffering associated with their illness in a study by Mellors, Erlen, Coontz, and Lucke (2001). The participants demonstrated three dominant patterns indica- tive of self-transcendence: creating a meaningful life pattern, achieving a sense of connectedness, and engaging in self-care.

A group of investigators (Ramer, Johnson, Chan, & Barrett, 2006) interested in quality of life among persons with HIV/AIDS studied 420 mostly Hispanic, male patients. Among the fi ndings was a signifi cant positive relationship between self-transcendence and level of energy in the patients. In addition, researchers found that levels of acculturation and self-transcendence were sig- nifi cantly related, suggesting that the meaning of self-transcendence may be infl uenced by cultural factors. Their study not only provided support for the relevance of self-transcendence among these patients but also suggested that acculturation may moderate the relationship between self-transcendence and health outcome variables in people with HIV/AIDS.

OTHER LIFE-THREATENING ILLNESSES

In a study of liver transplant recipients, Wright (2003) found self-transcendence to be positively related to quality of life and negatively related to fatigue, with further research needed to identify potential causal direction in these relation- ships. Bean and Wagner (2006) also studied liver transplant recipients (N = 471) with results indicating that self-transcendence becomes salient following the experience of liver transplant and was related signifi cantly to higher qual- ity of life and also may function as a mediator to decrease the effects of illness distress on quality of life.

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In a phenomenological study of individuals with spinal muscular atro- phy (SMA), self-transcendence was central to living with a sense of integrity, hope, and meaning amid the physical limitations experienced by individu- als with these individuals (Ho, Tseng, Hsin, Chao, & Lin, 2016). Williams (2012) conducted a phenomenological study of eight men and women who had received a stem cell translation the previous year. Analyses showed that self-transcendence is brought about by the intense suffering, as lived through the physical effects of the treatment, facing death, and eventually drawing strength from within themselves and from spiritual support. The fi ndings suggested that effects of vulnerability on well-being were mediated by self-transcendence.

Research on Nurses and Other Caregivers

Self-transcendence is studied as it occurs in family caregivers, nurses, and oth- ers providing care to patients. This area of research has increased over the years to reveal the signifi cance of self-transcendence in the well-being of caregivers.

Enyert and Burman (1999) found caregivers’ self-transcendence behaviors, such as being with and doing for their loved one as death approached, facili- tated personal growth and new meaning, and they were able to reach out to help others besides their family member. Poole’s (1999) research revealed that self-transcendence was an important phase in being a caregiver in Grounded Theory research with 19 family caregivers in the process of being a caregiver for frail older adults at home. Three phases of caregiving—connecting, dis- covering self, and transcending self—were identifi ed by which the caregiver became able to work with healthcare personnel as a partner instead of perpetu- ating confl ict in the relationship.

Acton and Wright (2000) and Acton (2002) addressed self-transcendence in family caregivers of adults with dementia, proposing self-transcendence to be a relevant and potentially therapeutic experience for family caregivers. However, when Acton (2002) conducted a naturalistic fi eld study of family caregivers, she found that caregivers of adults with dementia had little oppor- tunity to nurture self-transcendence and instead experienced social isolation, ambivalence, emotional fragility, and burden of caring for their family mem- ber. She concluded that some of these negative experiences associated with caregiving may inhibit development of self-transcendence in caregivers and interfere with their continued growth and well-being. Kim et al. (2011) dem- onstrated signifi cant positive links between self-transcendence and emotional well-being among family caregivers of chronically ill elders.

From interviews with 16 African American and White groups of great- grandmothers, Reese and Murray (1996) identifi ed fi ve domains of self- transcendence: connectedness, religion, being wise, values, and stories. The authors considered great-grandparents vital in facilitating self-transcendence and good relationships among family members.

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As part of her study of spiritual growth in nurses, Kilpatrick (2002) studied the relationships among self-transcendence, spiritual perspective, and spiritual well-being in female nursing students and faculty. She found positive correla- tions among those variables in students and faculty. Nursing students and fac- ulty differed signifi cantly on level of self-transcendence and spiritual well-being, suggesting that self-transcendence may increase with development. Wasner, Longaker, Fegg, and Borasio (2005) found that spiritual care intervention train- ing with 48 palliative care professionals increased their self-transcendence, spir- itual well-being, and positive attitude toward work with dying patients.

McGee (2004) employed the method of interpretive phenomenology to examine self-transcendence and its impact on nurses’ practice. Among results from the moving stories of nurses, McGee found self-transcendence to be an important mechanism of healing for nurses who have experienced diffi cult and traumatic personal life experiences. Her work highlighted the role of self- transcendence in healing the nurse and in enriching the practice of nurses for the mutual benefi t of both patient and nurse.

Along a similar line of thinking, Hunnibell, Reed, Quinn-Griffi n, and Fitzpatrick (2008) conducted dissertation research based on Self-Transcendence Theory. They studied self-transcendence as related to burnout syndrome in hos- pice and oncology nurses. Both groups of nurses face death and life-threaten- ing illness through their work with patients. However, they hypothesized that because of the philosophy of their healthcare setting and opportunities to pro- cess loss, hospice nurses would demonstrate higher levels of self-transcendence and lower levels of burnout than oncology nurses. Their fi ndings also provided empirical support for the hypothesis and for an inverse relationship between self-transcendence and three types of burnout. Hunnibell et al. concluded that self-transcendence is a resource for nurses and may protect them against burnout.

Signifi cant, positive relationships between work engagement (measured as vigor, dedication, and absorption) and self-transcendence were found by Palmer, Quinn Griffi n, Reed, and Fitzpatrick (2010) in their study of 84 acute care staff registered nurses. Through self-transcendence, the nurses increased self-aware- ness and inner strength and made sense of challenging work situations.

In summary, nurses and caregivers experience vulnerability and related health experiences through the challenges of their work as well as in their per- sonal lives. Overall, research fi ndings provide consistent evidence of the signif- icance of self-transcendence in the well-being of nurses and other caregivers.

■ USE OF THE THEORY IN NURSING PRACTICE

Theory-Informed Strategies for Practice

Research results indicate that a variety of strategies derived from Self- Transcendence Theory have been successful in promoting well-being and in

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diminishing negative outcomes in practice settings. The following sections are loosely organized by various strategies of expanding personal boundaries intrapersonally, interpersonally, and transpersonally.

INTRAPERSONAL STRATEGIES

Intrapersonal strategies may help a person expand personal boundaries inward to clarify knowledge about self and fi nd or create meaning and pur- pose in a diffi cult life experience. Meditation, prayer, visualization, life review, structured reminiscence, self-refl ection, and journaling are the techniques of self-transcendence that nurses may facilitate in patients to help them recognize patterns of their own healing.

Nurses may use cognitive strategies to support self-transcendence in help- ing patients integrate a diffi cult health event into their lives. Targeting infor- mation about the illness, using positive self-talk, and engaging in meaningful and challenging activities are techniques that can help a person integrate and grow from the illness experience (Coward & Reed, 1996).

The personal narrative was tested in a randomized, clinical trial as an inter- vention for enhancing self-transcendence in women with HIV, multiple scle- rosis, and systemic lupus erythematosus (Diener, 2003). STS scores increased signifi cantly in the intervention groups, suggesting that the intervention was successful in helping the women address issues related to having a life-threat- ening or life-altering illness.

McCarthy, Jiying, and Carini (2013) and McCarthy, Jiying, Bowland, Hall, and Connelly (2015) developed and tested a “Psychoeducational Approach to Transcendence and Health” (PATH) program to facilitate self-transcendence in promoting well-being in older adults. Strategies that promote self-transcen- dence may even be helpful with individuals with Alzheimer’s disease, as dem- onstrated in a case study of a family with a family member having this disease (Vitale, Shaffer, & Fenton, 2014).

INTERPERSONAL STRATEGIES

Interpersonal strategies for facilitating self-transcendence focus on connect- ing the person to others through formal or informal means, ranging from face to face or telephone to connecting on the Internet. Nurse visits, peer counsel- ing, informal networks, and formal support groups are examples of interper- sonal strategies that the nurse may arrange for the person (Acton & Wright, 2000). Maintaining meaningful relationships and strengthening affi liations with civic groups or a faith community are strategies that the nurse can facil- itate (McCormick, Holder, Wetsel, & Cawthon, 2001). A computer-mediated self-help intervention was designed to facilitate connections among lesbian, gay, bisexual, and transgender (LGBT) persons who shared similar interests (DiNapoli, Garcia-Dia, Garcia-One, O’Flaherty, & Siller, 2014).

7 . THEORY OF SELF -TRANSCENDENCE  135

Support groups are often cited as an effective way to connect people facing a diffi cult life situation. Groups that bring together people of similar health experiences can facilitate self-transcendence by connecting the person to others who can share the loss and exchange information and wisdom about coping with the experience and by providing an opportunity to reach beyond the self to help another. Joffrion and Douglas (1994) reported that nurses can facilitate self-transcendence during bereavement by helping the person participate in church or civic groups, develop or resume a hobby, share personal experiences of grief with others, and support others who have experienced loss.

In a series of pre-experimental and quasi-experimental studies, Coward (1998, 2003) developed and refi ned a series of support group sessions to facili- tate self-transcendence. These sessions provided a variety of activities designed to support self-transcendence in women facing breast cancer: orientation and information sessions, sharing cancer stories, problem solving, assertive commu- nication training, relaxation training, values clarifi cation, ongoing educational components, constructive thinking and self-instructional training, feelings management, and pleasant activity planning. In another quasi-experimental study with individuals with multiple sclerosis, peer support groups facilitated self-transcendence and physical well-being (JadidMilani, Ashktorab, Aben- Saeedi, & AlaviMaid, 2014). Similarly, Norberg et al. (2015) suggested that self- transcendence facilitated social contact, outdoor activities, and other functions that can increase longevity in elders with life-limiting medical conditions.

Group psychotherapy is another intervention strategy for enhancing self- transcendence. Young and Reed (1995) found that this intervention approach was effective in generating a variety of outcomes for a group of elders, for example, intrapersonally in terms of achieving self-enrichment, self-esteem, and self-affi rmation; interpersonally in terms of bonding with and helping oth- ers, enabling self-disclosure, and overcoming self-absorption; and temporally in terms of gaining acceptance of one’s past and feeling empowered about the future. A 6-week group reminiscing intervention showed an increase in self- transcendence and a nonsignifi cant decrease in depression for women in an assisted living facility (Stinson & Kirk, 2006). Self-transcendence and depres- sion level were signifi cantly, inversely related in this group.

Altruistic activities facilitate self-transcendence by providing a context for learning new things and expanding awareness about oneself and one’s world (Coward & Reed, 1996). Altruism also enhances a person’s inner sense of worth and purpose. McGee (2000) explained that practicing humility and providing service to others are tools of self-transcendence that can empower individuals to maintain a healthy lifestyle. Connections between people, whether to receive or provide support, are key strategies for enhancing self-transcendence. Chan and Chan (2011) tested interventions designed to expand boundaries toward others through participation in volunteer work and social activities. These activities promoted acceptance and fi nding meaning in spousal death by facilitating the passing of time among bereaved Hong Kong Chinese older adults.

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In a study by Willis and Griffi th (2010) of school-age boys victimized by bullying, altruistic views and practices were found to facilitate healing. The boys reached out to others in helping and seeking help, having an interest in learning and engaging in fun hobbies, and feeling empathy toward others. The authors emphasized to practitioners the importance of planning activities and interactions that can foster self-transcendence.

Elderly nursing home residents were studied for their perceptions on what personal qualities allowed them to rise above the diffi culties of advanced age (Bickerstaff, Grasser, & McCabe, 2003). Results from this qualitative study were consistent with patterns of self-transcendence identifi ed earlier by Reed (1991a) in her study of community-dwelling oldest-old adults: generativity, introjectivity, temporal integration, body transcendence, and one not previ- ously identifi ed, “relationship with self/others/higher being.” Many partici- pants exhibited more than one pattern of self-transcendence. The researchers concluded that caregivers of older adults in long-term care facilities and at home should look beyond custodial care to incorporate activities that build upon the residents’ capacity for self-transcendence that can help them cope with the losses of later life. Results from several studies support self-transcen- dence as clinically important in nurse–patient interactions to promote mental health among older adults in long-term care (Haugan, 2014; Haugan, Hanssen, & Mokenes, 2013; Haugan, Rannestad, Hammervold, Garasen, & Espnes, 2013, 2014).

TRANSPERSONAL STRATEGIES

Transpersonal strategies of self-transcendence are designed to help the person connect with a power or purpose greater than self. The nurse’s role in this pro- cess is often one of creating an environment in which transpersonal exploration can occur. It is worth noting here that several of the intervention strategies that foster intrapersonal growth can also foster a sense of transpersonal connection, such as meditation, prayer, visualization, artistic expression, and journaling.

Spiritual perspective or spiritual well-being, rather than religion per se, has been found to relate to self-transcendence by several researchers over the years, including Haase, Britt, Coward, Leidy, and Penn (1992), J. C. Thomas, Burton, Quinn Griffi n, and Fitzpatrick (2010), and Sharpnack, Quinn Griffi n, Benders, and Fitzpatrick (2010, 2011) in their two studies on the Amish community’s use of spiritual and alternative healthcare practices to foster well-being. Religious activities and prayer are also identifi ed as signifi cant to the well-being of per- sons facing life crises. McGee (2000) explained the need for the nurse to pro- vide an environment in which patients can look beyond themselves toward a higher power for help and be inspired to help others.

Schumann (1999) found that self-transcendence enhanced well-being in ven- tilated patients. Spiritual connections enabled patients to use temporal per- spectives of past and future to empower themselves; they synchronized their

7 . THEORY OF SELF -TRANSCENDENCE  137

lives with the realities of being on a ventilator and anticipating extubation and were then better able to manage this life-threatening health experience.

Artistic modalities such as art-making activities, creative bonding practice, memorial quilt making, and watching a therapeutic music video were based on Self-Transcendence Theory. These artistic modalities expand personal bound- aries and facilitate transcendence, which in turn increase well-being (Burns, Robb, & Haase, 2009; S. Chen & Walsh, 2009; Kausch & Amer, 2007; Walsh, Radcliffe, Castillo, Kumar, & Broschard, 2007). Robb et al. (2014) used Haase’s Resilience in Illness model to study a music video intervention with adolescents and young adults undergoing hematopoietic stem cell transplantation. They found this intervention facilitated self-transcendence and resilience along with factors relevant to well-being in these young individuals.

Other researchers found that poetry writing was an expressive therapy for facilitating self-transcendence in caregivers facing diffi cult life situations, and subsequently leading to positive outcomes of self-affi rmation, sense of achievement, catharsis, and acceptance among dementia caregivers (Kidd, Zauszniewski, & Morris, 2011). However, caregivers may need pragmatic assistance before they can engage in activities that support self-transcendence; for example, to foster self-transcendence in family caregivers of adults with dementia, Acton and Wright (2000) identifi ed the importance of helping arrange for in-home assistance or day care so that the family members have the time and energy to engage in activities that promote transpersonal awareness.

■ SUMMARY

Research fi ndings have shown that self-transcendence is integral to well-being across a diversity of health experiences that nurses address in practice. Nursing practices that facilitate self-transcendence result in healing outcomes during these health events, as in, for example, diminished depression and loneliness among depressed elders; increased hopefulness and self-care among chroni- cally ill elders; and increased meaning in life among persons with advanced breast cancer and other life-threatening illnesses; and increased well-being and self-affi rmation in family and professional caregiving.

■ CONCLUSION

Adequacy of the Theory

Professional nurses are defi ned in large part by their ability to engage human capacities for healing and well-being. Self-transcendence was presented as a resource for well-being. It represents “both a human capacity and a human struggle that can be facilitated by nursing” (Reed, 1996, p. 3). A goal in

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developing the theory was to gain better understanding of the dynamics of self-transcendence as it relates to health and well-being. This knowledge, in addition to that acquired through personal and ethical knowing and practice experience, can be used by nurses to foster well-being through strategies of self-transcendence.

There is internal consistency among the elements within the theory—the concepts, their defi nitions, and proposed relationships. Positive relationships were identifi ed between vulnerability and self-transcendence and between self-transcendence and well-being. Self-transcendence functions as a resource, correlate, or facilitator of specifi c indicators of well-being. Self-transcendence is often found to be a mediator between vulnerability experiences and well- being outcomes. Self-transcendence has also been conceptualized as an out- come or a process of well-being in its own right. Finally, in addition to the three key concepts in the theory, research fi ndings provide evidence on the role of various moderators in the process of self-transcendence.

The scope of Self-Transcendence Theory now reaches beyond the initial focus on older adults to include children, adolescents, and adults of all ages who experience vulnerability. The theory is being studied across cultures around the world. Research fi ndings are broadening applications of the theory to include a variety of normative life transitions and developmental events where processes of self-transcendence have yet to be explored in depth.

The theory provides a perspective relevant to nursing practice in pro- posing self-transcendence as a process by which human beings may sustain well-being in times of vulnerability. That is, self-transcendence is a process of expanding one’s boundaries to gain new insights for organizing and tack- ling health-related events. This process has empirical support. Findings from research consistently indicate that self-transcendence is associated with a wide variety of well-being indicators, from successful aging and meaning in life, to specifi c outcomes such as decreased fatigue or increased self-care activities of daily living. In addition, the scholarship of advanced practice nurses, graduate students, and researchers continues to build knowledge about personal, con- textual, and cultural factors that infl uence the process of self-transcendence.

Self-Transcendence Theory has social congruence. Self-transcendence has emerged as a foundational process in promoting societal welfare, as a devel- opmental imperative across the life span for a wide variety of health-related events. As such, nursing must be there to develop the knowledge and pro- vide the expert support that facilitates this cost-effective and holistic process of well-being for society.

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