Uncertainty
Faye I. Hummel
The words of the radiologist, “it’s breast cancer,” rang through my head over and over again as I sat in silence, alone, trying to make sense of this dreadful news. I couldn’t believe my body had forsaken me. I felt betrayed. Why me? Would I survive? Could this be true? What if …? Uncertainty built inside me, like a violent thunderstorm on a hot summer day. Uncertainty drenched me to my very core. That dark cloud of uncertainty follows me, even on the sunniest of days.
—Rita, 59-year-old female with breast cancer
INTRODUCTION
Uncertainty in chronic illness is pervasive. Chronic illness is marked by unpredictable changes in physical, cognitive, social, and lifestyle functions. Chronic illness restricts the terrain of the sufferer to local and familiar territory where one is least likely to be exposed to the gaze and questions of others (Goffman, 1963). With chronic illness, the timing, duration, and severity of symptoms are erratic. Misgivings about what one may be able to achieve in the present or in the future persist. Doubt about the success of treatment to slow disease progression and modify the disease course erodes self-confidence and generates stress and anxiety.
Chronic illness brings a prolonged state of impending adversity. The legend of Damocles’ sword illuminates the insidious nature of uncertainty and chronic illness. In this tale, Damocles spoke of his sovereign’s wealth and happiness, and as a result, Dionysius invited him to a great banquet at which Damocles was seated beneath a sharp sword suspended by a single hair (Encyclopedia Britannica, 2011). Damocles’ sword symbolizes the precarious nature of everyday life for persons with chronic illness. On any given day, an individual with chronic illness may need to forego cherished or longed for activities, experience loss of freedom due to limitations and special needs, or be unable to purchase prescribed treatments and pharmaceuticals. Everyday life changes dramatically and is filled with unknowns. Uncertainty in chronic illness has been described as a cognitive stressor marked by a loss of control and a perception of doubt. Uncertainty impedes coping and adjustment to chronic illness, increases psychological and emotional distress, and diminishes quality of life.
The Nature of Uncertainty
Uncertainty arises when “details of situations are ambiguous, complex, unpredictable, or
probabilistic; when information is unavailable or inconsistent; and when people feel insecure in their own state of knowledge or the state of knowledge in general” (Brashers, 2001, p. 478). Uncertainty is derived from one’s self-perception of cognition. Thus, a person who believes him/herself to be uncertain is uncertain. Further, uncertainty may be experienced in relation to probability of an event. When the likelihood of an event is 0% or 100%, uncertainty is lowest. If there are multiple alternatives with equal probability, then uncertainty is highest (Brashers, 2001). Attributes of probability, perception, and temporality are present in every situation of uncertainty (McCormick, 2002).
probabilistic; when information is unavailable or inconsistent; and when people feel insecure in their own state of knowledge or the state of knowledge in general” (Brashers, 2001, p. 478). Uncertainty is derived from one’s self-perception of cognition. Thus, a person who believes him/herself to be uncertain is uncertain. Further, uncertainty may be experienced in relation to probability of an event. When the likelihood of an event is 0% or 100%, uncertainty is lowest. If there are multiple alternatives with equal probability, then uncertainty is highest (Brashers, 2001). Attributes of probability, perception, and temporality are present in every situation of uncertainty (McCormick, 2002).
Uncertainty is a hallmark of acute and chronic illness. Uncertainty is experienced by those with chronic illness who may fear rejection and social isolation; some may be concerned with diagnosis and treatment, while others may worry about recurrence of their illness even with improved physical health. An understanding of the nature of uncertainty enhances one’s ability to describe and explain influences on behavior and develop interventions to improve people’s lives (Brashers, 2001).
Uncertainty in Chronic Illness Is Certain
The dynamic nature of chronic illness makes uncertainty a part of life (Mishel, 1999). In acute illness, individuals act to decrease uncertainty, whereas individuals with chronic conditions seek to manage uncertainty. Even though uncertainty is experienced in the present, uncertainty is based on past experiences and assumptions for the future (Penrod, 2001). Embedded within the illness experience are ambiguity, inconsistency, vagueness, unpredictability, unfamiliarity, and the unknown, all creating uncertainty (Mishel, 1984). Persons with chronic illness experience situations and symptoms for which they have no experience or knowledge, thus triggering uncertainty. Uncertainty is a psychological state in which individuals initially perceive it and respond relative to how they believe it will impact them. As such, uncertainty is a neutral experience, neither good nor bad (Brashers, 2001; Mishel, 1988). The assessment of uncertainty as beneficial or harmful determines one’s affective response to uncertainty (Mishel, 1988).
Uncertainty is the inability of an individual to understand the meaning of illness-related events such as disease process or treatment (Mishel, 1988) and one’s perception of ambiguity, complexity, inconsistency, and unpredictability associated with illness and illness-related events (Mishel, 1984, 1990). Vague prognosis, lack of illness-related information, and unpredictability of symptoms and complications lead to uncertainty (Mishel, 1984, 1988).
When certainty exists, the future is taken for granted. When uncertainty exists, the future becomes the focus, with attempts to capture a clear vision of what was never clear to begin with (McCormick, 2002). Persons with chronic conditions do not know how their chronic illness will impact the future. They may feel good one day and incapacitated the next. They receive inconsistent information from healthcare providers and information sources about disease management and necessary lifestyle changes. Uncertainty clouds one’s ability to determine if
aches and pains are associated with the disease process or are benign.
aches and pains are associated with the disease process or are benign.
Building on Mishel’s (1981, 1988, 1990) theoretical work on uncertainty in acute and chronic illnesses, scholars have identified similar experiences of uncertainty in many chronic illnesses. Uncertainty is a universal phenomenon among chronic illnesses including cancer (Clayton, Mishel, & Belyea, 2006; Sammarco & Konecny, 2010); peritoneal dialysis (Madarv & Bar-Tal, 2009); Parkinson’s disease (Sanders-Dewey, Mullins, & Chaney, 2001); multiple sclerosis (McNulty, Livneh, & Wilson, 2004); chronic pain (Johnson, Zautra, & Davis, 2006); organ transplantation (Lasker, Sogolow, Olenik, Sass, &Weinrieb, 2010; Martin, Stone, Scott, & Brashers, 2010); and HIV/AIDS (Brashers et al., 2003). Uncertainty influences the way in which individuals respond to a diagnosis, deal with illness symptoms, manage treatment regimens, and maintain social relationships.
Illness uncertainty influences coping with and adapting to fibromyalgia. Johnson and colleagues (2006) examined the role of uncertainty in coping with pain in 51 women with fibromyalgia. They found women who were experiencing greater pain levels and high illness uncertainty had more difficulty coping with their disease. Women with endometriosis reported uncertainty and emotional distress as a result of the complexity and impact of endometriosis on their lives (Lemaire, 2004). In persons undergoing home peritoneal dialysis, uncertainty was positively associated with self-rated illness severity (Madar & Bar-Tal, 2009).
Uncertainty is present across the illness trajectory, during events of diagnosis, treatment, and prognosis (Mishel, 1981, 1984, 1988). A longitudinal study examined uncertainty and anxiety in 127 women with suspected breast cancer during the diagnostic period. Results demonstrated that uncertainty and anxiety were significantly higher before the diagnosis than after the diagnosis. Uncertainty and anxiety were significantly lower for women diagnosed with benign disease than for those women with malignant diagnosis (Liao, Chen, Chen, & Chen, 2008).
Uncertainty was measured in three groups of adolescents and young adults with cancer at specific times in their cancer experience: newly diagnosed, diagnosed 1 to 4 years, and diagnosed 5 or more years. Overall level of uncertainty remained unchanged among the three groups, although differences did exist in the specific concerns related to uncertainty (Decker, Haase, & Bell, 2007). Women who had undergone surgery for ovarian malignancies reported that anxiety and depression played an important role in uncertainty throughout their illness (Schulman-Green, Ercolano, Dowd, Schwartz, & McCorkle, 2008).
Martin and colleagues (2010) identified sources of uncertainty across the transplantation trajectory. Thirty-eight participants who were waiting for or who had received an organ transplant were interviewed. During all phases of the transplant experience, participants reported medical, personal, and social forms of uncertainty. Denny (2009), in a qualitative study of 31 women with endometriosis, found uncertainty exists around diagnosis, disease course, and the future. In a longitudinal, descriptive study of persons with an implantable cardioverter defibrillator, twenty-one male participants—who were educated,
married, and white—demonstrated that uncertainty did not change significantly over time (Mauro, 2010).
married, and white—demonstrated that uncertainty did not change significantly over time (Mauro, 2010).
Uncertainty is pervasive and can persist for long periods of time even after life-saving procedures and treatments are complete (Martin et al., 2010; Mauro, 2010). Persson and Hellstrom (2002) reported uncertainty as a theme that emerged from interviews with nine patients after ostomy surgery. Similarly, uncertainty of cancer recurrence was highlighted by persons with colorectal cancer (Simpson & Whyte, 2006). For breast cancer survivors, survivor uncertainty persists long after treatment completion due to fear of recurrence (Dirksen & Erickson, 2002) and erodes quality of life (Sammarco & Konecny, 2008). Gil and colleagues (2004) examined the sources of uncertainty in 244 older African American and Caucasian long-term breast cancer survivors. They found the most important triggers for uncertainty were hearing about someone else’s cancer and their own new aches and pains. Among breast cancer patients, uncertainty affects the illness experience, adaptation, quality of life, and sense of hope (Sammarco, 2001).
From the moment of my diagnosis of breast cancer to this very day two years later, uncertainty has been constant and consistent. First it was doubt about surgery and treatment. Were my healthcare providers competent? Did I have enough information to make the right decisions? Would I be able to handle all that was ahead of me? Even during the first year of being “cancer free,” I always felt as though the other shoe was going to drop. And sure enough, results from a follow-up mammogram fueled my cancer fears. The biopsy showed no further breast cancer, I was relieved but … I simply can’t subdue the nagging doubt and fear that cancer will return at any time. Uncertainty, a constant reminder there simply is no guarantee with cancer.
—Rita
Older adults report less intolerance of uncertainty compared to their younger counterparts (Basevitz, Pushkar, Chaikelson, Conway, & Dalton, 2008). Uncertainty appears to decrease with age. Older people in Taiwan report less illness uncertainty than when they were younger (Lien, Lin, Kuo, & Chen, 2009). Younger Taiwanese women with breast cancer reported higher uncertainty due to concerns with changes in their physical condition, careers, and family roles (Liao et al., 2008).
Other uncertainty differences were noted in the literature. Sammarco and Konecny (2010) reported higher levels of uncertainty in Latina breast cancer survivors compared to Caucasian breast cancer survivors. Level of education affects uncertainty and stress; for example in one study (Madar & Bar-Tal, 2009), educated patients were better able to manage levels/feelings of uncertainty. The ability of patients to process information influences uncertainty.
Current research supports a positive association between symptom severity and uncertainty in chronic illness. Mullins and colleagues (2001) found a relationship between illness intrusiveness and uncertainty among persons with multiple sclerosis. Kang (2006) reported similar findings with adults diagnosed with atrial fibrillation. Those with greater symptom severity perceived more uncertainty. Wolfe-Christensen, Isenberg, Mullins, Carpentier, and Almstrom (2008) found a similar
relationship among college students with asthma. Mullins, Chaney, Balderson, and Hommel (2000) found with increased illness severity, uncertainty had a significant effect on depression in young adults with long-standing asthma.
relationship among college students with asthma. Mullins, Chaney, Balderson, and Hommel (2000) found with increased illness severity, uncertainty had a significant effect on depression in young adults with long-standing asthma.
Uncertainty and Social Networks
Illness uncertainty affects the individual with chronic illness as well as those within his/her social network, including caregivers, family members, and friends. Members of a social network of someone with a chronic illness face their own feelings and fears of uncertainty and unpredictability (Mitchell, Courtney, & Coyer, 2003; Northouse et al., 2002; Donovan-Kicken & Bute, 2008) and may experience discomfort and anxiety about how to act and what to say to the person with chronic illness. Adults with a parent with probable Alzheimer’s disease reported uncertainty about the medical aspects of Alzheimer’s disease, including etiology, symptoms, treatment, and prognosis. They reported uncertainty about their own predisposition for Alzheimer’s disease as well as conflicting caregiver roles and their financial responsibilities. Social sources of uncertainty experienced by these families included unpredictability of social reactions and social interactions, including family dynamics (Stone & Jones, 2009).
In a qualitative study investigating the experiences of informal caregivers, including spouses and adult children of stroke survivors, Greenwood, Mackenzie, Wilson, and Cloud (2009) reported uncertainty as a central theme. Reich, Olmsted, and van Puymbroeck (2006) reported uncertainty significantly impacted the partner relationships of patients with fibromyalgia.
Uncertainty among family and friends of someone with a chronic illness is managed by seeking information from a variety of sources including the Internet, professional and mainstream publications, healthcare providers, support groups, and other members in their social network (Donovan-Kicken & Bute, 2008).
Sources of Uncertainty
Uncertainty permeates all aspects of one’s life including diagnosis, treatment, and prognosis. Medical uncertainty has been associated with insufficient information about diagnosis, ambiguous symptoms and disease trajectory, and complex treatments and interventions (Mishel, 1988, 1990). In research conducted with persons with HIV disease, Brashers and colleagues (2003) extended Mishel’s (1990) model of uncertainty in illness to include not only medical uncertainty but also personal and social sources of uncertainty. Sources of medical uncertainty identified by persons with HIV disease were ambiguity with their HIV diagnosis and associated diagnostic tests as well as unpredictability and multiplicity of opportunistic infections. Personal sources of uncertainty were related to the invisibility of their chronic illness, social roles, and precarious financial situations due to the expense of necessary medications (Brashers et al., 2003). Families coping with Alzheimer’s disease reported similar sources of uncertainty. Interviews with participants in Sammarco and Konecny’s (2010) examination of the experiences of adult children of a parent with Alzheimer’s disease revealed medical, personal, and social sources of uncertainty.
CASE STUDY
Jim, age 70, lives with his wife, Nancy, age 68. Both Jim and Nancy are retired. They have been married for 25 years and have no children. Both are in excellent physical health. They have many friends and have been active in social and community organizations and events. They enjoy sports and travel frequently. Two years ago, with little notice, Jim began having difficulty remembering minor things, such as where he put his keys, or what he had for breakfast. He thought these changes were probably just a sign of “old age.” But with time, Jim experienced even more difficulty with his memory and after a number of tests and physician visits, he was diagnosed with Alzheimer’s disease. This devastating news was confusing and overwhelming. Jim and Nancy were consumed with questions, and worries and stress. Jim began pharmacological treatment for his Alzheimer’s disease. When one drug failed to slow his symptoms, he tried another. As Jim’s cognitive abilities continued to slowly erode, he experienced more frustration, anxiety, and depression with associated fatigue and loss of appetite. Nancy has been very attentive to Jim’s needs and provides psychological and behavioral support. She has cut back on her social activities to minimize the time Jim is home alone. They now see their friends less frequently and often decline invitations for social gatherings. Nancy and Jim are reluctant to travel despite a long planned trip to Mexico.
Discussion Questions
1. Discuss how uncertainty is manifested in Alzheimer’s disease for Jim. Discuss for Nancy.
2. Explore the issue of uncertainty for a chronic illness using the four constructs of uncertainty (ambiguity, complexity, inconsistency, and unpredictability).
3. How is uncertainty different and similar for the person with chronic illness compared to the caregiver? Compared to others in the social network?
4. Design an action plan to assist persons with chronic illnesses and their families to manage uncertainty and promote quality of life.
THEORETICAL UNDERPINNINGS OF UNCERTAINTY
Early work on uncertainty distinguished clinical from functional uncertainty (Davis, 1960). McIntosh (1974, 1976) examined uncertainty in persons with cancer and other chronic conditions. Mishel (1981) posited uncertainty as one’s inability to form a cognitive schema, which is created when stimuli are recognized and classified, a process that gives meaning to an event. Based on Lazarus and Folkman’s (1984) stress
and coping framework, Mishel (1988) developed a middle range theory of uncertainty to explain how people with illness cognitively process illness-related stimuli to construct meaning for illness events. This theory purports that uncertainty occurs when there is difficulty constructing a cognitive schema—a person’s subjective interpretation —of illness events. Mishel subsequently extended her theory to uncertainty in chronic illness. Mishel (1990) recognized those with acute illness experienced time-limited uncertainty whereas those with chronic conditions experienced uncertainty throughout their lives. Mishel’s theory progressed from predicting, controlling, and eliminating uncertainty to include managing and accepting uncertainty as a way of life in chronic illness.
and coping framework, Mishel (1988) developed a middle range theory of uncertainty to explain how people with illness cognitively process illness-related stimuli to construct meaning for illness events. This theory purports that uncertainty occurs when there is difficulty constructing a cognitive schema—a person’s subjective interpretation —of illness events. Mishel subsequently extended her theory to uncertainty in chronic illness. Mishel (1990) recognized those with acute illness experienced time-limited uncertainty whereas those with chronic conditions experienced uncertainty throughout their lives. Mishel’s theory progressed from predicting, controlling, and eliminating uncertainty to include managing and accepting uncertainty as a way of life in chronic illness.
Mishel (1988) identified the primary antecedent of uncertainty as stimuli frame. Stimuli frame has three components: symptom pattern, event familiarity, and event congruence. Symptom pattern is the consistency of symptoms to form a pattern. Event familiarity is the degree to which a situation is habitual, repetitive, or contains recognizable cues and is determined by time and experience in a healthcare environment (Mishel, 1988, p. 225). Event congruence is the consistency between the expected and actual experience with an illness-related event. Events are reliable and stable, subsequently facilitating interpretation and understanding. These three components of the stimuli frame reduce uncertainty (Mishel, 1988).
The stimuli frame is influenced by two variables: cognitive capacity and structure providers. Cognitive capacity is the ability of the person to process information. Limited cognitive capacity due to information overload, ability of a person to process information, and the physiologic factors that may impair cognitive ability diminish the ability to recognize the symptom pattern, event familiarity, and event congruence. The second variable, structural providers, are the resources used to interpret the stimuli frame. Structure providers reduce uncertainty by assisting in the interpretation of an illness event or by helping identify symptom patterns, event familiarity, and event congruence. Structure providers include credible authority, social support, and education (Mishel, 1988). Credible authority is the degree to which a person has trust and confidence in his/her healthcare provider. Social support is the ability of the person to express his/her thoughts and feelings with those (e.g., family, social network) who are also experiencing the disease. Together these variables support development of a cognitive schema for interpretation of illness events, and thus reduce uncertainty (Mishel, 1988).
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