State of the Science Uncertainty in Illness Merle H. Mishel The midalte-range nursing theory of uncertainty in illness is presented from ‘both a theoretical and empirical perspectise. The theory explains how per sons construct meaning jor illness events, with unceriainty indicating the absence of meaning. A imodel of the uncertainty theory displaying the con- pts and their relationships forms the basis forthe vortcal and empirical ‘material. Discussion of the theory is organised around three major themes ‘he antecedents of uncertainty, the process of uncertainty appraise! ond cop fing with uncertainty neertainty concerning what will happen, what the consequences of an event are, and what the event ‘means, are important to a person with any illness. ‘Managing the uncertainty associated with an illness and its treatment may be an essential task in adaptation. ‘Uncertainty is defined as the inability to determine the mean- ing of illness-related events. It isthe cognitive state created when the person cannot adequately structure or categorize an event because of the lack of sufficient eves. Uncertainty oceurs in a uation in which the decision maker is unable to assign dein value to objects or events and/or is unable to predict outcomes accurately (Mishel, 1984). The middle-range nursing theory of uncertainty in illness is discussed in this paper. The theory con- tains knowledge derived from nursing and other disciplines, addresses clinical phenomena derived from the practice arena (Roy, 1985) and offers an interactionist perspective for explain- ing the process of determining meaning in the illness experience Uncertainty in Illness ‘The uncertainty theory explains how patients cognitively process iliness-related stimuli and construct meaning in these events. Uncertainty, of the inability to siructure meaning. can develop ifthe patient does not form a cognitive schema for ilness events. A cognitive schema isthe patient's subjective interpreta tion of ines, treatment and hospitalization, As can be seen in Figure 1, stimuli frame, cognitive capacity and structure provide ers precede uncertainty and fer the information that is proc- essed by the patient. ‘The primary antecedent variable, stimuli frame, refers to the form, composition and structure of the stimuli that the person perceives; the stimuli frame has three component: symptom P tem, event familiarity and event congruence. These three com- ponents provide the stimuli that are structured by the patient into a cognitive schema, which creates less uncertainty. Spmpome patie velers to the degree to which symptoms present with su tient consistency to be perceived as having a pattem or configu: ration. Based on this pattern, the meaning ofthe symptoms ean bbe determined. Even fanilany refers to the degree to which the situation is habitual, repetitive, or contains recognized cues Volume 20, Number 4, Winter 1988 ‘When events are recognized as familiar, they can be associated with events from memory and their meaning can be determined, Event congruence refers to the consistency between the expected and the experienced in illness-related events. This consistency implies reliability and stability of events, thus facilitating inter- pretation and understanding. These components of the stimuli frame are inversely related to uncertainty; they reduce uncertainty. ‘The three components of the stimuli frame are influenced by ‘wo variables: cognitive capacity and structure providers. Cogn tive capacity refers to the information-processing abilities of the person. Only a limited amount of information ean be processed at any one time (Warburton, 1979). Information overload occurs when this capacity is exceeded, Limited cognitive capacity will reduce the ability to perceive symptom pattern, event familiarity and the congruence of events. ‘The second variable influencing the stimuli frame is stmcture roviders—the resources available to assist the person in the inter pretation of the stimuli frame, Structure providers are proposed. to reduce the state of uncertainty both directly and indirectly. Uncertainty is reduced directly when the patient relies on the structure providers to interpret the events, ‘The reduction in uncertainty occurs indirectly when structure providers aid the patient in determining the pattern of symptoms, the familiarity ‘of events and the congruence of experiences. Structure providers are educational level, social support and credible authority. Stimuli are processed by patients to construct a cognitive schema for illness events. Uncertainty results when a cognitive schema cannot be formed. In the illness experience, uncertainty hhas four forms: (a) ambiguity concerning the state of the illness, (b) complexity regarding treatment and system of care, (c) lack of information about the diagnosis and seriousness ofthe illness, and (d) unpredictability of the course of the disease and prognosis, Uncertainty is not inherently a dreaded or desired state until the implications of the uncertainty are determined. Under condi- tions of uncertainty, there is great potential for diverse evalua tions and outcomes because the situation lacks form or structure, thus leaving it open to multiple definitions. Because of the amor” phous nature of the stimuli, they can be shaped by the person’s appraisal and reformed like putty. According to this theory, uncertainty can be appraised as a danger or as an opportunity Uncertain events evaluated as a danger imply harm, and coping strategies to reduce the uncertainty are implemented. Uncertain ‘events evaluated as opportunity imply a positive outcome, and MERLE H. MISHEL, RN, Ph.D, Beta Mu, is Professor and Dvsion Head, Mental Health Nursing atthe College of Nursing, Unversity of arizona ‘The author acknowledges Dr. Carie Jo Braden, University of arizona, for her cogent comments and creative suggestions In the develop: ‘ment of the theory. Correspondence to College oF NUrsing, University ‘of arizona, Tucson, AZ 8572 “Accepted for publication March 15, 1968. 225‘STIMULI FRAME. ‘Symptom pattern -) Event familiarity INFERENCE | —-- [UNCERTAINTY } | “i LUSION Event congruency (+) (+) ) COGNITIVE STRUCTURE CAPACITIES: PROVIDERS Credible authority Social support Education COPING MOBILIZING STRATEGIES ‘AFFECT- CONTROL STRATEGIES ay ADAPTATION DANGER APPRAISAL ‘OPPORTUNITY (+) COPING: BUFFERING STRATEGIES Figure 1. Model af percelved uncertainty iniiness. coping strategies to maintain uncertainty are implemented. Ifthe coping strategies are effective, then adaptation will occur. Signs of dificulty in adapting, rather than indicating uncertainty itself, indicate individuals’ inability to manipulate the uncertainty in the desired direction. When the theory is applied to patient's experience with specific illness, sclected linkages in the theory are singled out for study. Following the model, the theory of uncer: tainty will be elaborated using current findings from a series of tuncersainty studies from nursing and related fields. Stimuli Frame Symptom Pattern ‘Symptom pattern, one component of stimuli frame, refers to the degree to which symptoms present with sulficient consistency to form a pattern or configuration, When symptoms form a pat- tern, less uncertainty exists, particularly less ambiguity about the state of the illness (Mishel & Braden, 1988). To appraise symp- toms, patients evaluate their number, intensity, frequency, duration and location. To generate a hypothesis, this sensory information is used along with generalized information from their own illness experience, culture and social network as well as from health care practitioners, Multiple factors can interfere with the normal process of symptom appraisal such as the characteris- ties of the stimuli, the accuracy of the appraisal and the saliency ‘oF distinguishability of symptoms. When symptoms are characterized by inconsistency in inten- sity, frequency, number, location and/or duration, such as ‘occurs in some chronic illnesses, a pattern is not discernable. Tnconsistent symptoms cannot be used to gauge reliably the state of the illness; thus they generate uncertainty. Ilnesses character: ized by remissions and exacerbations, having flares indicating symptom reoccurrence and disruption of previous symptom pat- tern, are astociated with elevated levels of uncertainty (King & Mishel, 1986). Braden and Lynn (1987) found that, in persons with rheumatoid arthritis, lack of consistent symptom pattern, ‘was the greatest predictor of uncertainty. Patients with diseases characterized by symptom variability such as immunological 226 conditions, systemic lupus erythematosus and heart disease have higher levels of uncertainty than do persons with illness charac terized by symptom consistency (Mishel, 1981). ‘Accuracy of symptom perception is frequently limited because of perceptual and cognitive biases such as selective attention and emotional arousal. Leventhal, Nerenz and Steel (1984) note that femotions play a role in the accuracy with which individuals scan their symptoms. Ifa person is depressed or threatened by an ill- ness, symptome of actual or presumed illness may be interpreted to be more severe than they actually are, Also, a sense of help- lessness surrounding the cause or persistence of symptoms may make it difficult to discern the seriousness of the physical state (Rowat & Knafl, 1985) ‘Symptom appraisals may also be difficult because symptoms lack saliency. Symptoms must be sufliciently prominent to be included in the symptom pattern. Absence of salient symptoms with no guarantee of cure can generate more uncertainty than does the existence of symptoms (Mishel, Hostetter, King & Graham, 1984). Distinguishability also affects assessment of a symptom pattern. To assess the characteristics of each symptom, paticnts must be able to differentiate one symptom from another. In treatments such as those given for cancer, when symptoms of illness blend with symptoms generated by treatment, distinguish- ability of symptoms becomes an issue, Because of the large number of internal sensations that are vague, diffuse and subjective, monitoring the body to identify symptom pattern is a continual activity. If symptoms are consis- tent, predictable, salient and distinguishable, then a symptom pattern can be identified, and uncertainty will be less. Mishel land Braden (1988) found that the presence of a symptom pattern ‘was a significant predictor of less uncertainty among women undergoing treatment for gynecological cancer. Event Familiarity “The second component of stimuli frame, event familiarity, refers to the habitual or repetitive nature of the structure of the environment. Whereas symptom pattern refers to the structure of physical sensations, event familiarity refers co patterns within the health care environment. Familiarity of events is developed IMAGE: Journal of Nursing Scholarshipover time and through experience in a setting Familiarity is generated through a cognitive map built on experience with the environment. New events are related to the cognitive map and, if they fit the general nature of individuals’ schematic knowledge, the event is evaluated as being familia, Cognitive maps are generated from personal experience, cultural input, social sources and health professionals (Leventhal et al, 1984). Information about the environment stored in cognitive ‘maps enables persons to sense the expected performance in various circumstances. With event familiarity, uncertainty i prevented. In the health care environment, novelty and complexity of events impede development of event familiarity. According to Budner (1962), novelty indicates a substantially new situation in which there are few familiar cues such as first admission to 4 hospital or initiation of chemotherapy, radiation or other treat~ ‘ments. Complexity isa situation in which there are a great num- ber of eues to be taken into account, for example, in a diagnostic work-up, Novelty resulting in higher uncertainty levels occurs in family ‘members of patients suddenly admitted to intensive care. When patients and family members are oriented to the unit prior to ‘admission and gain a degree of familiarity, this reduces the nov- elty of the environment (Mintun, 1984). With a sudden admis: n, patients and family members are thrust into a novel and complex treatment setting. Mishel (1981) found that complexity and novelty of events resulting in uncertainty can also occur in patients undergoing diagnostic tests that are unfamiliar such as a cardiac catheterization. When treatment is more routine and consistent, for example, a medical treatment or a routine inva- sive treatment such as hemodialysis, the events are familiar and associated with lower levels of uncertainty (Mishel, 1981). Nov- elty appears to be the aspect of unfamiliarity that generates ‘uncertainty, and, as novelty abates, uncertainty decreases, The longer patients live with a disease, the less uncertainty they expe- rience (Braden & Lynn, 1987; King & Mishel, 1986). Yet, when novelty does not abate over time and the treatment setting remains strange and alien, higher levels of uncertainty are evi- denced (Mishel, 1987) Event Congruence Event congruence, the third component of stimuli frame refers to the consistency between what is expected and what is experi enced in illness-related events. Lack of congruence between the ‘expected and the experienced creates questions concerning the predictability and stability of the event. The generation of uncer- tainty through the lack of congruence can occur when expecta- tions of cure are shattered by an unforeseen reoccurrence of disease. Webster and Christman (in press) noted that patients who had a history of coronary artery disease, experienced more ‘uncertainty in recovering from a myocardial infarction than did patients having their first exposure to coronary artery disease. Likewise, unmet expectations of cure also generate uncertainty when a treatment effect is not achieved by a predetermined time (Mishel, 1985). Another source of incongruence resulting in uncertainty can occur when treatment does not produce a change in how a person feels, therefore then have no indication of any change in their physical status, for example, undergoing radia~ tion. Unexpected rapid changes that are inconsistent with expec tations also exemplify a lack of congruence. Levanthal et al. (1964) noted that when cancer patients’ nodes shrank in one or ‘wo treatinent cycles, the recovery was associated with levels of distress twice that reported by patients whose lymph nodes shrank more gradually. The former group had difficulty coping with the inconsistency between the absence of concrete symp- toms and the continuation of treatment. Volume 20 Cognitive Capacity Since cognitive capacity refers to the information-processing abilities of persons, any physiological malfunction will lessen these abilities and have an impact on cognition. The processing abilities most susceptible to disruption are those requiring atten- ional resources. Demands on the attentional capacity disrupt the processing of stimuli frame information, thus eliciting uncer- tainty. Physical iliness itself is a potent attention-seizing distrac- tion and can reduce the total amount of attention that individuals can devote to a cognitive task. Attentional resources are also reduced by pain, drugs and poor nutritional state. Internal stimuli such as pain, discomfort, danger, and such internal phys- ‘ological events as autonomic nervous system activity can ‘monopolize cognitive capacity and impair problem-solving acti ity (Mandler, 1979) ‘When the patient perceives the health-related environment as ‘8 danger, cognitive efficiency is lessened, and fewer cues. are Processed. Dangerous situations tend to increase the level of arousal, which in turn focuses patients’ attention more narrowly ‘on aspects of the situation considered most important. Restric- tions on cognitive capacities under stress also affect memory funetion. When these patients attempt to recall events, only the ‘most salient will be accessible, thus weakening the ability t0 as- sociate incoming stimuli with preexisting cognitive schema (Mandler, 1979) Changes in cognitive processing abilities also occur through manipulation of corticol activity by cholinolytics. Mandler (1979) reported that persons receiving cholinolyties report loss of aware- ness or alertness, difficulty in concentrating and shortened atten- tion span. Other drugs, particularly sedatives, have a depressing effect on cognition and weaken particularly the ability to search {for information in the long-term memory, to maintain attention and to suppress distractions. Impairment in information process- ing has also been attributed to the neurotoxic effects of chemo- ‘therapy, particularly in older age groups (Silberfarb, 1963) Impairment of memory and thinking, whether the result of ‘demands that monopolize cognitive resources or because of fac tors that alter cognitive abilities, weaken the accuracy of appraisal, causing environmental events to be perceived as being Structure Providers Education Education is proposed to have both an indirect and direct rela ‘ionship to uncertainty. In the indirect relationship, education can assist in supplying a structure to the events in the stimuli frame by enlarging a patient's knowledge base with which to associate these events, thus providing meaning and context. Sup- port for this position is uneven when education is considered along with other components of structure providers (Mishel, 1961; Mishel & Braden, 1988). When education is examined alone, support for its direct impact on uncertainty is evident, with those having less than a high school education demonstrat. ing higher levels of uncertainty in the form of more perceived complexity concerning treatment and more dificulty in under- standing the system of care (Galloway, 1988; King & Mishel, 1986; Mishel, 1985). Those with more education are able to ‘modify the uncertainty more rapidly than are those with less edu- cation. Individuals with less education seem to require more time to construct meaning for events, and they experience uncertainty for longer periods of time than do individuals with more educa- tion (Christman et al., 1988; Mishel, 1985). Social Support Social support acts to prevent uncertainty in various life crises lumber 4, Winter 1988 ey)