Uncertainty in Illness Theory

Uncertainty in Illness Theory 

Donald E. Bailey, Jr. and Janet L. Stewart


Merle H. Mishel was born in Boston, Massachusetts. She graduated from Boston University with a B.A. in 1961 and received her M.S. in psychiatric nursing from the University of California in 1966. Mishel completed her M.A. and Ph.D. in social psychology at the Claremont Graduate School, Claremont, California, in 1976 and 1980, respectively. Her dissertation research, supported by an individual National Research Service Award, was the development and testing of the Perceived Ambiguity in Illness Scale, later renamed the Mishel Uncertainty in Illness Scale (MUIS-A). The original scale has been used as the basis for the following three additional scales:

Early in her professional career, Mishel practiced as a psychiatric nurse in acute care and community settings. While pursuing her doctorate, she was on faculty in the Department of Nursing at the California State University at Los Angeles, rising from assistant to full professor. In addition, she practiced as a nurse therapist in both community and private practice settings from 1973 to 1979. After completing her doctorate in social psychology, she relocated to the University of Arizona College of Nursing in 1981 as an associate professor and was promoted to professor in 1988. She served as Division Head of Mental Health Nursing from 1984 to 1991. While at the University of Arizona, Mishel received numerous intramural and extramural research grants that supported the continued development of the theoretical framework of uncertainty in illness. During this period, she continued practicing as a nurse therapist, working with the heart transplant program at the University Medical Center. She was inducted as a fellow in the American Academy of Nursing in 1990.

Mishel returned to the East Coast in 1991 and joined the faculty as a professor in the School of Nursing, University of North Carolina at Chapel Hill, and was awarded the endowed Kenan Professor of Nursing Chair in 1994. Friends of the National Institute of Nursing Research presented her with a Research Merit Award in 1997 and invited her to present her research as an exemplar of federally funded nursing intervention studies at a Congressional Breakfast in 1999. She is the Director of the T-32 Institutional National Research Service Award Training Grant, Interventions for Preventing and Managing Chronic Illness. The T-32 awards predoctoral and postdoctoral fellowships to nurses interested in developing interventions for a variety of underserved chronically ill patients. Currently she serves as the Director of Doctoral and Post-doctoral Programs at the School. Mishel also maintains a prolific program of nursing intervention research with several cancer populations. Of note is that Mishel’s research program has been funded continually by the NIH since 1984, such that each research grant has built upon findings from prior studies in order to move systematically toward theoretically derived, scientifically tested nursing interventions.

In addition to the awards previously identified, Mishel was the recipient of a Sigma Theta Tau International Sigma Xi Chapter Nurse Research Predoctoral Fellowship from 1977 to 1979 and received the Mary Opal Wolanin Research Award in 1986. In 1987, Mishel was first alternate for the Fulbright Award. She has been a visiting scholar at many institutions throughout North America, including University of Nebraska, University of Texas at Houston, University of Tennessee at Knoxville, University of South Carolina, University of Rochester, Yale University, and McGill University. She served as doctoral program consultant for the University of Cincinnati College of Nursing from 1991 to 1992 and Rutgers University School of Nursing in 1993. In 2004, Mishel received the Linnea Henderson Research Fellowship Program Award, from Kent State University, School of Nursing. Over the last 15 years, Mishel has presented more than 80 invited addresses at schools of nursing throughout the United States and Canada. Reflecting the growing international interest in her theory and measurement models, Mishel conducted an International Symposium on Uncertainty at Kyungpook National University in Daegu, South Korea, served as a visiting scholar at Mahidol University in Bangkok, Thailand, and recently delivered the keynote address at the annual convention of the Japanese Society of Nursing Research, in Sapporo, Japan.

Mishel is a member of a number of professional organizations. They include the American Academy of Nursing, Sigma Theta Tau International, American Psychological Association, American Nurses Association, Society of Behavioral Medicine, Oncology Nursing Society, Southern Nursing Research Society, and the Society for Education and Research in Psychiatric Nursing. She has served as a grant reviewer for the National Cancer Institute, National Center for Nursing Research, and National Institute on Aging and was a charter member of the study section on human immunodeficiency virus (HIV) at the National Institute of Mental Health.


When Mishel began her research into uncertainty, the concept had not previously been applied in the health and illness context. Her original Uncertainty in Illness Theory (Mishel, 1988) drew from existing information-processing models (Warburton, 1979) and personality research (Budner, 1962) from the psychology discipline, which characterized uncertainty as a cognitive state resulting from insufficient cues with which to form a cognitive schema or internal representation of a situation or event. Mishel attributes the underlying stress-appraisal-copingadaptation framework in the original theory to the work of Lazarus and Folkman (1984). The unique aspect was her application of this framework to uncertainty as a stressor in the context of illness, which made the framework particularly meaningful for nursing.

With the reconceptualization of the theory, Mishel (1990) recognized that the Western approach to science supported a mechanistic view in its emphasis on control and predictability. By using critical social theory, Mishel recognized the bias inherent in the original theory, an orientation toward certainty and adaptation. Mishel then incorporated tenets from chaos theory, and because of its focus on open systems, allowed for a more accurate representation of how chronic illness creates disequilibrium and how people ultimately can incorporate continual uncertainty to find new meaning in illness.



Uncertainty is the inability to determine the meaning of illness-related events, occurring when the decision maker is unable to assign definite value to objects or events, or is unable to predict outcomes accurately (Mishel, 1988).


The Uncertainty in Illness Theory grew out of Mishel’s dissertation research with hospitalized patients, for which she used both qualitative and quantitative findings to generate the first conceptualization of uncertainty in the context of illness. Beginning with the publication of Mishel’s Uncertainty in Illness Scale (Mishel, 1981), there has been extensive research into adults’ experiences with uncertainty related to chronic and life-threatening illnesses. Considerable empirical evidence has accumulated to support Mishel’s theoretical model in adults. Several recent integrative reviews of uncertainty research have comprehensively summarized and critiqued the current state of the science (Mast, 1995; Mishel, 1997a, 1999; Stewart & Mishel, 2000). The authors include studies here that directly support the elements of Mishel’s uncertainty model.

Most empirical studies have focused predominantly on two of the antecedents of uncertainty, stimuli frame and structure providers, and the relationship between uncertainty and psychological outcomes. Mishel tested other elements of the model, such as the mediating roles of appraisal and coping, early in her program of research (Mishel & Braden, 1987; Mishel, Padilla, Grant, & Sorenson, 1991; Mishel & Sorenson, 1991), but these model elements, along with cognitive capacity as an antecedent to uncertainty, have generated less research attention.

Several studies have shown that objective or subjective indicators of the severity of life-threat or illness symptoms were associated positively with uncertainty (Braden, 1990; Grootenhuis & Last, 1997; Hinds, Birenbaum, Clarke-Steffen, Quargnenti, Kreissman, Kazak, et al., 1996; Janson-Bjerklie, Ferketich, & Benner, 1993; Tomlinson, Kirschbaum, Harbaugh, & Anderson, 1996). Across a sustained illness trajectory, unpredictability in symptom onset, duration, and intensity has been related to perceived uncertainty (Becker, Jason-Bjerklie, Benner, Slobin, & Ferketich, 1993; Brown & Powell-Cope, 1991; Jessop & Stein, 1985; Mishel & Braden, 1988; Murray, 1993). Similarly, the ambiguous nature of illness symptoms and the consequent difficulty in determining the significance of physical sensations frequently have been identified as sources of uncertainty (Cohen, 1993; Comaroff & Maguire, 1981; Hilton, 1988; Nelson, 1996; Weitz, 1989).

Mishel and Braden (1988) found that social support had a direct impact on uncertainty by reducing perceived complexity and an indirect impact through its effect on the predictability of symptom pattern. The perception of stigma associated with some conditions, particularly HIV infection (Regan-Kubinski & Sharts-Hopko, 1995; Weitz, 1989) and Down’s syndrome (Van Riper & Selder, 1989), served to create uncertainty when families were unsure about how others would respond to the diagnosis. Family members have been shown consistently to experience high levels of uncertainty as well, which may further reduce the amount of support experienced by the patient (Brown & Powell-Cope, 1991; Hilton, 1996; Wineman, O’Brien, Nealon, & Kaskel, 1993). In addition, uncertainty was heightened by interactions with healthcare providers in which patients and family members received unclear information or simplistic explanations that did not fit their experience, or perceived that care providers were not expert or responsive enough to help them manage the intricacies of the illness (Becker et al., 1993; Comaroff & Maguire, 1981; Mason, 1985; Sharkey, 1995).

Numerous studies have reported the negative impact of uncertainty on psychological outcomes, characterized variously as anxiety, depression, hopelessness, and psychological distress (Failla, Kuper, Nick, & Lee, 1996; Grootenhuis & Last, 1997; Jessop & Stein, 1985; Miles, Funk, & Kasper, 1992; Mishel & Sorenson, 1991; Schepp, 1991; Wineman, 1990). Uncertainty has also been shown to negatively impact quality of life (Braden, 1990; Padilla, Mishel, & Grant, 1992), satisfaction with family relationships (Wineman et al., 1993), satisfaction with healthcare services (Green & Murton, 1996; Turner, Tomlinson, & Harbaugh, 1990), and family caregivers’ maintenance of their own self-care activities (Brett & Davies, 1988; Lang, 1987; O’Brien, Wineman, & Nealon, 1995).

Mishel reconceptualized the uncertainty theory in 1990 to accommodate responses to uncertainty over time in people with chronic conditions. The original theory was expanded to include the idea that uncertainty may not be resolved but may become part of an individual’s reality. In this context, uncertainty is reappraised as an opportunity and prompts the formation of a new, probabilistic view of life. To adopt this new view of life, the patient must be able to rely on social resources and healthcare providers who themselves accept the idea of probabilistic thinking (Mishel, 1990). If uncertainty can be framed as a normal part of life, it can become a positive force for multiple opportunities with resulting positive mood states (Gelatt, 1989; Mishel, 1990).

Support for the reconceptualized Uncertainty in Illness Theory has been found in predominantly qualitative studies of people with a variety of chronic and life-threatening illnesses. The process of formulating a new view of life has been described by women with breast cancer and cardiac disease as a revised life perspective (Hilton, 1988), new life goals (Carter, 1993), new ways of being in the world (Mast, 1998; Nelson, 1996), growth through uncertainty (Pelusi, 1997), and new levels of self-organization (Fleury, Kimbrell, & Kruszewski, 1995). In studies of predominantly men with chronic illness or their caregivers, the process has been described as transformed self-identity and new goals for living (Brown & Powell-Cope, 1991), a more positive perspective on life (Katz, 1996), reevaluating what is worthwhile (Nyhlin, 1990), contemplation and self-appraisal (Charmaz, 1995), uncertainty viewed as opportunity (Baier, 1995), and redefining normal and building new dreams (Mishel & Murdaugh, 1987).


Mishel’s original Uncertainty in Illness Theory, first published in 1988, included several major assumptions (Figure 28-1). The first two reflect how uncertainty was conceptualized originally within the psychology discipline’s information-processing models, as follows:

Two more assumptions reflect the uncertainty theory’s roots in traditional stress and coping models that posit a linear stress → coping → adaptation relationship as follows:

Mishel herself challenged these last two assumptions in her reconceptualization of the theory, published in 1990. The reconceptualization came about as a result of contradictory findings when the theory was applied to people with chronic illnesses. The original formulation of the theory held that uncertainty typically is appraised as an opportunity only in conditions that represent a known downward trajectory; in other words, uncertainty is appraised as opportunity when it is the alternative to negative certainty. Mishel and others found that people also appraised uncertainty as an opportunity in situations without a certain downward trajectory, particularly in long-term chronic illnesses, and that in this context people often developed a new view of life.

Dissatisfied with the traditional linear models that informed the original theory, Mishel turned to the more dynamic chaos theory to explain how prolonged uncertainty could function as a catalyst to change a person’s perspective on life and illness. Chaos theory contributed two of the following theoretical assumptions, which replace the linear stress → coping → adaptation outcome portion of the model as follows:

In Mishel’s reconceptualized model, neither the antecedents to uncertainty nor the process of cognitive appraisal of uncertainty as danger or opportunity changes. However, uncertainty over time, associated with a serious illness, functions as a catalyst for fluctuation in the system by threatening one’s preexisting cognitive model of life as predictable and controllable. Because uncertainty pervades nearly every aspect of a person’s life, its effects become concentrated and ultimately challenge the stability of the system. In response to the confusion and disorganization created by continued uncertainty, the system ultimately must change in order to survive.

Ideally, under conditions of chronic uncertainty, a person gradually moves away from an evaluation of uncertainty as aversive to adopt a new view of life that accepts uncertainty as a part of reality (Figure 28-2). Thus uncertainty, especially in chronic or life-threatening illness, can result in a new level of organization and a new perspective on life, incorporating the growth and change that can result from uncertain experiences.


Mishel asserted the following (1988, 1990):

image Uncertainty occurs when a person cannot adequately structure or categorize an illness-related event because of the lack of sufficient cues.

image Uncertainty can take the form of ambiguity, complexity, lack of or inconsistent information, or unpredictability.

image As symptom pattern, event familiarity, and event congruence (stimuli frame) increase, uncertainty decreases.

image Structure providers (credible authority, social support, and education) decrease uncertainty directly by promoting interpretation of events, and indirectly by strengthening the stimuli frame.

image Uncertainty appraised as danger prompts coping efforts directed at reducing the uncertainty and managing the emotional arousal generated by it.

image Uncertainty appraised as opportunity prompts coping efforts directed at maintaining the uncertainty.

image The influence of uncertainty on psychological outcomes is mediated by the effectiveness of coping efforts to reduce uncertainty appraised as danger or to maintain uncertainty appraised as opportunity.

image When uncertainty appraised as danger cannot be reduced effectively, coping strategies can be employed to manage the emotional response.

image The longer uncertainty continues in the illness context, the more unstable the individual’s previously accepted mode of functioning becomes.

image Under conditions of enduring uncertainty, individuals may develop a new, probabilistic perspective on life, which accepts uncertainty as a natural part of life.

image The process of integrating continual uncertainty into a new view of life can be blocked or prolonged by structure providers who do not support probabilistic thinking.

image Prolonged exposure to uncertainty appraised as danger can lead to intrusive thoughts, avoidance, and severe emotional distress.


As a middle range theory both derived from and applicable to clinical practice, Mishel’s Uncertainty in Illness Theory is a classic example of the multiple steps required to develop theory with both heuristic and practical value. Neither purely inductive nor deductive, Mishel’s theoretical work initially arose from asking questions about the nature of an important clinical problem, followed by systematic qualitative and quantitative inquiry and careful application of theoretical models borrowed from other disciplines. Since publication of the original theory in 1988, Mishel and others have carried out numerous empirical tests of the relationships among the major constructs in the model, applying and largely confirming the theory in many illness contexts. Mishel’s reconceptualization of the theory in 1990 was deductive, in that it was generated from principles of chaos theory, and was confirmed by empirical evidence from qualitative studies that suggested that people’s responses to uncertainty changed over time within the context of serious chronic illnesses. Thus Mishel’s theory represents the bidirectional process by which theory both informs and is shaped by research.



Mishel’s theory describes a phenomenon experienced by acute and chronically ill individuals and their families. The theory has its beginning in Mishel’s own experience with her father’s battle with cancer. During his illness, he began to focus on events that seemed unimportant to those around him. When asked why he had chosen to focus on such events, he replied that when these activities were being done, he understood what was happening to him. Mishel believed this was her father’s way of taking control and making sense out of an overwhelming situation. She knew early in the development of her concept and theory that nurses could identify the phenomenon from their experiences in caring for patients.

Several nurses have moved the theory from research to practice. Writing for an audience of critical care nurses, Hilton (1992) applied the theory in prescribing how to assess and intervene with patients experiencing uncertainty. Using examples of patients recovering from a cardiac event, Hilton explained how patients who misinterpret unclear physical symptoms may overprotect themselves by limiting physical activity that could be essential to their recovery. She further delineated how uncertainty can activate various types of coping to manage the situation, and described appropriate nursing interventions based on a thorough assessment of the patient’s or family member’s uncertainty.

Wurzbach (1992), writing for medical-surgical nurses, exemplified the experience of a woman hospitalized with a lump in her breast. Focusing on the woman’s family history of breast cancer and no previous experience with hospitalization, Wurzbach counseled nurses to assess for certainty as well as uncertainty. Based on this assessment, management strategies in the form of nursing interventions were prescribed. Wurzbach cautioned nurses that intervention may not be appropriate in situations in which the patient experiences a moderate or optimal level of certainty-uncertainty. In these circumstances, patients may feel hopeful and may not require nursing intervention.

Mishel’s Uncertainty in Illness Theory has also been applied to the practice of enterostomal therapy (ET) nursing. Righter (1995) described how trust in the ET nurse’s knowledge and experiences helps patients develop a cognitive schema for the ostomy experience. Functioning as a credible authority, an antecedent of uncertainty, an ET nurse is able to intervene with patients to promote effective coping strategies.

Based on review of the database of the Managing Uncertainty in Illness Scale users (Mishel, 1997b), many are master’s prepared clinicians seeking to understand the experience of uncertainty in a variety of clinical settings with different patient populations. The scale and theory were both used by clinicians from eight countries other than the United States.

Stay updated, free articles. Join our Telegram channel

Feb 9, 2017 | Posted by in NURSING | Comments Off on Uncertainty in Illness Theory

Full access? Get Clinical Tree

Get Clinical Tree app for offline access