Uncertainty in Illness What is Uncertainty in Illness?
Uncertainty in illness, as defined by Mishel (1988), refers to the inability to determine the meaning of illness-related events. This uncertainty arises when patients and their families cannot assign a definite value to the events or accurately predict outcomes due to insufficient information or cues. The theory of uncertainty in illness, proposed by Mishel, explains how uncertainty develops in patients experiencing acute illness and suggests mechanisms through which patients manage this uncertainty. In 1990, Mishel expanded the original theory to include chronic illness, recognizing that uncertainty is a constant presence from diagnosis to living with long-term conditions.
Illness Uncertainty as a Psychological Issue
Uncertainty regarding illness is one of the greatest psychological stressors for patients facing life-threatening diseases (Koocher, 1984). Although uncertainty is not the total experience in either acute or chronic illnesses, it remains a constant aspect from diagnosis to long-term management. Early studies, such as those by Davis (1960), differentiated between clinical and functional uncertainty, linking these experiences to the healthcare delivery process and the agendas of healthcare providers.
From the 1960s to the mid-1970s, additional studies on uncertainty emerged, such as McIntosh’s work (1974, 1976) on cancer patients’ desire for information. McIntosh’s findings provided early insights into the ambiguity surrounding diagnosis and prognosis and its psychological impact on patients. Later work by Wiener in 1975 further explored the concept of uncertainty in chronic illness, illustrating how uncertainty invades multiple life aspects and the strategies people use to tolerate it.
Parents’ Perception of Illness
Since the introduction of the Mishel Uncertainty in Illness Scale (MUIS) in 1981 and the Parents’ Perception of Uncertainty Scale (PPUS) in 1983, the study of uncertainty has expanded significantly. These scales, along with the early conceptualization of uncertainty within illness contexts, have led to a growing body of research across various fields. Qualitative and quantitative research, particularly in nursing, has contributed to a better understanding of uncertainty in illness (Hilton, 1992; Righter, 1995; Wurzbach, 1992).
Additionally, a second instrument on uncertainty in illness was developed by Hilton (1994), based on the stress and coping framework of Lazarus and Folkman (1984). Unlike the Mishel scales, this instrument is not derived from a nursing theory of uncertainty in illness.
Nursing Research and Uncertainty
A number of reviews have been conducted on the research surrounding uncertainty in illness. The first review by Mast (1995) used Mishel’s uncertainty in illness theory as the framework to evaluate research findings. Mishel herself conducted reviews in 1997 and 1999, using both the 1988 and the expanded 1990 uncertainty theories to evaluate qualitative work on uncertainty in chronic illness. Other notable reviews include Stewart and Mishel’s (2000) study on parent and child uncertainty, Neville’s (2003) focus on orthopedic conditions, and Barron’s (2000) examination of stress, uncertainty, and health.
Further work on the concept of uncertainty has been explored by McCormick (2002) and Babrow (2001) from the field of health communication. Discussions of the theory of uncertainty have appeared in sources on nursing theory (Aligood & Tomey, 2002; Mishel & Clayton, 2003). Despite a strong interest in the study of uncertainty, much of the research remains atheoretical, with many quantitative studies using Mishel’s uncertainty scales without linking variable selection to the theory itself.
Most research on uncertainty focuses on specific clinical populations, with quantitative studies predominantly addressing acute illnesses and more qualitative work examining chronic conditions. This disparity may be due to the design of uncertainty scales, which are primarily geared toward acute illnesses and hospital settings, providing less accurate measurements for chronic illnesses.
Research Designs for Illness Uncertainty
Most studies on uncertainty are cross-sectional, with findings that are associative rather than causative. However, many studies use causal modeling to interpret these findings. Some consistent findings have emerged: uncertainty tends to decrease over time but returns with illness recurrence or exacerbation. Additionally, uncertainty is highest or most distressing while awaiting a diagnosis.
Current evidence strongly supports the role of social support in reducing uncertainty among individuals with acute illnesses. Given the consensus on these findings, future research should focus on building upon established knowledge rather than repeating similar studies.
Antecedents or Modifiers of Uncertainty
Evidence regarding personality dispositions as antecedents or modifiers of uncertainty is not robust. In acute illness, some support exists for mastery as a mediating factor, but studies of personality dispositions related to uncertainty are limited, particularly to a small number of studies involving cancer patients receiving treatment.
Further research is needed to determine which personality dispositions are associated with uncertainty in other acute illnesses and at which phase of the illness experience. Additionally, it is essential to explore whether personality variables become immobilized during the acute phase of illness and re-emerge during recovery or the management of ongoing uncertainty in chronic illness.
Chronic Illness and Uncertainty
In chronic illness, emerging quantitative studies suggest that perceived personal control, as a personality disposition, influences uncertainty and its relationship with mood state. Additionally, spirituality is being studied for its potential to modify the impact of uncertainty on mood. Both of these research avenues are essential, indicating that personality dimensions may play a role in reducing uncertainty or mitigating its negative effects in long-term illnesses.
Coping with Uncertainty
Studies on coping with uncertainty in individuals with acute illnesses have consistently shown a relationship between uncertainty and emotion-focused coping. However, to determine if a broader range of coping strategies exists, researchers need to develop instruments specifically tailored to the population under study. If coping strategies were derived from the setting and population, results might differ from those obtained using general measures of coping.
Negative Impact of Uncertainty on Health and Life
There is substantial evidence that uncertainty negatively impacts quality of life and psychosocial adjustment in populations with acute illnesses. Uncertainty has consistently been associated with depression, anxiety, poorer quality of life, less optimism, and negative mood states. The strength and consistency of this evidence provide a clear direction for developing interventions targeting these outcome variables.
Supportive educational interventions have shown effectiveness in mitigating the adverse outcomes of uncertainty. Recent studies on managing uncertainty in breast and prostate cancer have reported significant intervention effects (Braden, Mishel, Longman, & Burns, 1998; Mishel et al., 2002). Future research should focus on repeated testing of these interventions and the development of other theory and research-based interventions that build on existing descriptive research.
Managing Uncertainty in Chronic Illness
In chronic illness, the management of uncertainty has been enriched by qualitative investigations, which have identified various management methods across multiple chronic illnesses. In contrast to the limited and often ineffective coping strategies reported using standardized scales, qualitative studies indicate that people are resourceful in finding approaches for living with enduring uncertainty. More research is needed to replicate findings across studies, supporting particular strategies.
Conclusion
Research on the concept of uncertainty continues to expand across disciplines and countries. The Mishel uncertainty in illness scales have been translated into more languages, and research is ongoing worldwide. Uncertainty in illness is a multifaceted issue that significantly impacts patients’ psychological well-being, quality of life, and health outcomes. Understanding how uncertainty develops, the factors that modify it, and strategies to cope with it is crucial for healthcare providers to offer better support and care to patients facing both acute and chronic illnesses. Further research should continue to explore these themes, building on the current body of knowledge to improve patient care and support.