Uncertainty in Illness

Uncertainty in illness is present for both acute and chronic illnesses and can be described as a cognitive stressor, a sense of loss of control, and a perceptual state of doubt which is dynamic in nature. Illness uncertainty can be associated with poor adjustment, but often needs to be evaluated as a threat to have its deleterious effect. For example, illness uncertainty in pain populations is related to increased sensitivity to pain and reduction in tolerance of painful stimuli. Illness uncertainty can result in maladaptive coping, higher psychological distress, and reduced quality of life. Uncertainty can’t be categorized as a good or bad state. It mainly depends on the situations that surround the uncertainty. It can be defined as the inability to understand the meaning of a situation or event and it can develop if the patient doesn’t completely comprehend the total magnitude of the state of his or her illness. The purpose of this paper is to explore the concept of uncertainty in illness and to review three nursing research studies to explain this concept in more detail. Concept- Uncertainty in Illness Nursing interest in the uncertainty associated with life-threatening diseases and chronic illnesses and their treatment technology is growing.

Nurse investigators have tried to research variables that precede and influence this uncertainty, as well as how persons evaluate, cope with, and adjust to uncertainty. Mishel has extensively explored the concept of uncertainty in illness since the early1980s. She defines it as “the inability to determine the meaning of illness related events. It is the cognitive state created when the person cannot adequately structure or categorize an event because of the lack of sufficient cues” (Mishel, 1988). The family’s adaptation and coping strategies may prove to be inadequate in managing uncertainty surrounding illness conditions, which continues beyond the critical care stage. Wineman et al. (1996) also found a relationship between the level of one’s education and uncertainty, and those with more education having lower uncertainty levels. There are four basic forms of uncertainty in this theoretical framework: ambiguity surrounding the state of the illness, the complexity of treatment and care, a lack of information about the illness, and the unpredictable nature of illness and treatment (Mishel, 1988).

Uncertainty begins with the stimuli frame, which allows patients to cognitively structure their uncertainty based on the form, composition, and structure of a given stimuli. In the uncertainty theory, there are two appraisal processes used to determine the value placed upon the uncertainty –inference and illusion. Both processes can be fostered by the patient, their social resources and health care providers. Inference refers to the evaluation of uncertainty based on examples of related situations. If the inferences are seen as positive, then the uncertainty will be appraised as an opportunity. If the inferences are seen as threatening, then the uncertainty will be appraised as a danger (Mishel, 1981). If uncertainty is appraised as a danger, there is an expectation of a harmful outcome resulting in the activation of coping strategies to reduce the uncertainty. If uncertainty is inferred to be an opportunity, a positive outcome is implied, and coping strategies to maintain the uncertainty are implemented. In an opportunity appraisal of uncertainty, the uncertainty must be maintained because its continuation is necessary for a positive view of the situation to remain viable. If the coping strategies used in either appraisal are effective, then adaptation will occur.

Moreover, people living with chronic or acute illnesses often face uncertainty about their health and about their medical care. Health care providers can affect the uncertainty of patients by providing information about the causes, symptoms, and consequences of the illness, as well as descriptions of medical procedures and treatments that might be needed. Physicians, nurses, and other health care providers often are the trusted experts who help patients manage the illness experience (including uncertainty), especially through diagnosis and treatment decision-making. Health care providers do this by (a) explaining the causes and consequences of symptom patterns, (b) increasing event familiarity with information about the illness and about the health care system, and (c) promoting event congruence by helping patients interpret the meaning of illness experiences.

Second, health care providers can reduce a patient’s uncertainty by taking charge of treatment decisions. When patients have trust and confidence in decisions that their health care provider makes, their uncertainty will be less. Evaluation of a conceptual model based on Mishel’s theories of uncertainty in illness Lin, Yeh & Mishel (2010) conducted one research study entitled “Evaluation of a conceptual model based on Mishel’s theories of uncertainty in illness in a sample of Taiwanese parents of children with cancer: A cross-sectional questionnaire survey”. The purpose of this study was to examine Mishel’s conceptual model that depicts coping and growth in Taiwanese parents living with the continual illness uncertainty about their child’s cancer. This conceptual model was based on Mishel’s theories of Uncertainty in Illness. The impacts various factors like child’s health status, parents’ education level and perceived social support on parental uncertainty were explored. The combined effect of coping as well as the influence of parental uncertainty and parents’ perceived social support on growth through uncertainty was incorporated in the model testing.

This study was consisted of 205 mothers and 96 fathers of 226 children enrolled in a longitudinal cancer study in Taiwan. This study only used the primary data which was collected at baseline. Parental uncertainty and growth through uncertainty were measured by the translated questionnaires originally developed by Mishel. Other two variables like parents’ perceived social support and coping were measured by the second culturally sensitive instrument developed in Taiwan. Study concluded that child’s health status and parents’ perceived social support would significantly predict parental uncertainty. This study suggests that parental uncertainty has negative impact on coping strategies such as interacting with family members while these coping strategies may help Taiwanese parents gain growth through uncertainty. Coping strategies of searching for spiritual meaning and increasing religious activities were not significantly influenced by parental uncertainty in this study.

The two coping strategies may be relevant to growth through uncertainty due to Taiwanese cultural belief. Parental uncertainty is a significant psychological experience for Taiwanese parents of children with cancer. In Taiwanese culture, not only the illness-related uncertainty but also the awareness of difficult life triggered by the child’s cancer may have influence on parents’ coping strategies. Even though many studies have shown significant impacts of uncertainty on negative psychological outcomes, such as anxiety and depression, this study showed the possibility for Taiwanese parents to remain positive while they are trying to cope with the experience of their children having cancer. Moreover, the availability of social support promotes growth through uncertainty by its impact on lowering parental uncertainty and encouraging more coping. Measuring illness uncertainty in men undergoing active surveillance for prostate cancer Bailey et al (2011) proved reliability of The Mishel Uncertainty in Illness Scale in a study entitled as “Measuring illness uncertainty in men undergoing active surveillance for prostate cancer”.

The purpose of this study was to test the reliability of the Mishel Uncertainty in Illness Scale Community (MUIS-C) for use with men undergoing Active surveillance for prostate cancer. Uncertainty is an aversive experience and plays an important role in the lives of people with acute and chronic illness. Yet reliable and valid measures of uncertainty have not been fully used in research studies to prove its reliability. The MUIS-C was administered to four convenience samples of men with localized prostate cancer who were undergoing active surveillance and participating in studies.

The most common convention of “number of observations” divided by the “number of variables” must be greater than or equal to 10 was used to calculate the necessary sample sizes for Samples 1 and 2. Sample 3 was a pilot study, and Sample 4 was an exploratory study. Item–Total correlations were positive for all 23 items of the MUIS-C. Item 19 (“I’m certain they will not find anything else wrong with me”) was the only item that was not significantly correlated with the total MUIS-C score. This study indicates that the MUIS-C is a valid and reliable tool based upon a substantive theoretical and empirical background that is directly applicable to future research on the assessment and management of illness uncertainty in the active surveillance population.

A comparative study of uncertainty, optimism and anxiety in patients Caroll & Arthur (2010) has compared the concepts of uncertainty, optimism and anxiety in patients in a nursing research study named as “A comparative study of uncertainty, optimism and anxiety in patients receiving their first implantable defibrillator for primary or secondary prevention of sudden cardiac death”. The main purpose of this study was to examine the relationships among optimism, anxiety, and uncertainty in patients receiving their first implantable cardioverter defibrillators (ICD) for either primary prevention or secondary prevention of sudden cardiac death and to examine whether the two groups differ in uncertainty at different time points. A purposive sample of 16 primary and 15 secondary prevention participants were consented from an urban academic teaching center located in Ontario, Canada. At the pre-implant visit (T-1), a cardiovascular history was recorded as well as demographic data (age, sex, education level, employment status, household income, and marital status) followed by administration of the Mishel Uncertainty in Illness Scale (MUIS-C), The Spielberger State-Trait Anxiety Inventory (STAI), and The Revised Life Orientation Test (LOT-R).

Regardless of underlying indication for receiving an ICD, at pre-implant the participants experienced moderately high levels of uncertainty. At the first post-implant appointment, after participants received an ICD, their MUIS-C scores were not different compared to pre-implant. By the 1-month follow up appointment, a different pattern emerged. The primary prevention group’s MUIS-C scores were lower while the secondary group remained slightly elevated. The participants in this study, who for the most part were already living with cardiovascular disease, may have appraised the ICD as an opportunity (not a danger) which could lead to adaptation and a reduction in uncertainty scores over time. The recipients of ICDs may be acutely uncertain during the early phase of living with a new defibrillator but then return to a state of chronic uncertainty about their illness. A positive appraisal of the ICD could also account for participant’s low state anxiety scores. Summary All the above research studies have described the different aspect of illness uncertainty.

With specific ongoing management or coping strategies, continual uncertainty in chronic illness or in illness with a potential for recurrence, may change gradually from a threat to a new perspective of life. Lin, Yeh & Mishel (2010) has proved the relationship between parental uncertainty and positive psychological outcomes in terms of growth through uncertainty is mediated by coping strategies seen in Taiwanese parents of children with cancer. Moreover, availability of social support may increase growth through uncertainty by lowering parental uncertainty and encouraging more coping in Taiwanese parents of children with cancer. Bailey et al (2011) has d evaluated the reliability of the MUISC for use with men undergoing active surveillance for prostate cancer. With the elimination of one item, all items showed significant positive item total correlations, with excellent reliability.

In addition to this, third nursing research study has demonstrated that there are differences in uncertainty between primary and secondary prevention patients by 1-month post-ICD implant. ICD patients reported having an optimistic disposition and normal levels of anxiety. Implications of concept of “Uncertainty in Illness” in Nursing In uncertainty in illness theory, Mishel (1988) defined credible authority as the “degree of trust and confidence patients have in health care providers”. And she proposed that it helps patients reduce their uncertainty through two path-ways. First, nurses can provide stability by providing all the information about illness and its prognosis, which subsequently can lower down the uncertainty in patients. Secondly, nurses can reduce a patient’s uncertainty by providing information about availability of various kinds of treatment modalities and helping them to make their final decisions. The nursing profession plays an important role in making progress toward these goals through advocacy for effective communication. Conclusion In conclusion, the concept of uncertainty in illness is used by nurses and health care providers to develop new sense order in patients. Current nursing practice involves activities that are consistent with this world view.

Nursing activities with the chronically and cute illnesses function currently to promote probabilistic thinking when nurses help the patient to consider multiple new ways to accomplish valued activities or consider alternatives in adjusting to the changing nature of the illness or foster the notion there are many factors influencing the patient’s response to treatment. If the uncertainty endures and cannot be eliminated, the length of time the flux of uncertainty exists is likely to enhance the sense of disorganization, promoting a high level of instability. When the stimuli associated with illness, treatment and recovery are vague, ill-defined, ambiguous and unpredictable, (i.e., uncertain) the sense of coherence is lost. This loss of meaning throws the person into a state of confusion and disorganization. Therefore, in all cases where this conceptualization is applied, one has to determine the necessary threshold of the uncertainty plus the essential time period for the flux to lead to a new perspective on life. It is likely this will differ across individuals and clinical situations.

References

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