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Uncertainty in Illness Theory

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From a theoretical perspective, the underpinning of nursing care is neither ultimate nor complete. There are a lot of inconsistencies and gaps that hinder a complete and thorough understanding of the field. In other words, there is no single concept explicating care delivery in a holistic and sufficient manner. In this respect, numerous mid-range theories appear that try to articulate the discipline as aptly as possible. These bridging hypotheses attempt to address the shortcomings that exist between the dominant theoretical paradigms and empirical evidence in order to broaden the scope of field comprehension. In particular, Merle H. Mishel has introduced the uncertainty in illness theory (UIT) as a way to explain uncertainty as a foundation for research and practice. This paper briefly summarizes the hypothesis while at the same time examining the origins of its conceptualization and development. Furthermore, its value for practice and research is critically assessed. In addition, the paper analyzes how the theory was tested within the practical and scholarly domains. Apart from that, an overall evaluation of UIT is conducted in light of its generalizability, ethical, cultural, and social policy issues linked to the hypothesis, strengths, and weaknesses it has utilized, and applicability of the framework in my individual practice.

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Summary of Theory

The Main Ideas of the Theory

Foremost, the definition of UI implies an “inability to determine the meaning of illness-related events” as well as an “inability to assign a definite value and/ or accurately predict outcomes”. This concept is a centerpiece of the theory and is one of the keys to delivery of care with regard to chronic or life-threatening diseases. In accordance with the rationale by the conceptualist, thorough awareness of healthcare practitioners in uncertainty-related concepts will allow improved care delivery, disease management, and more efficient disease-based decision making. As a result, a practitioner should conduct investigations based on MUIS as a key instrument with respect to measuring the uncertainty components. With these findings, one will be able to develop a patient-centric care provision framework and deliver as accurate care as possible.

The Main Concepts

As previously noted, uncertainty is the core of the UIT. Another important concept in this context is a cognitive schema, which should be referred to as “the person’s subjective interpretation of illness-related events”. In general, the UIT is developed on the grounds of a set of intertwined concepts, such as antecedents and appraisal of and coping with uncertainty. In their turn, these uncertainty classification groups comprise of the notions related to the previously indicated major concepts. For instance, the antecedent theme of uncertainty presumes such elements as “stimuli frame, cognitive capacity, and structure providers”. This health domain relates to a human capability to perceive, proceed and respond to illness-related information based on individual experience and awareness.

Apart from that, appraisal of uncertainty allows one to link values to particular situations and events in the scope of disease with respect to their appraisal or illusion. Namely, the perceived information about an illness can be interpreted either as an opportunity (e.g. effective treatment exists) or a danger (e.g. a novel disease has no cure or treatment available). These two aspects gradually flow into a more important theme, which is coping with the uncertainty that can be embodied in danger, opportunity, coping, and adaptation.

The Main Assumptions of the Theory

The primary assumptions of the theory are linked to clarity, simplicity, generality, and accessibility. First, despite the complex nature of uncertainty as a concept and its significance in future patient outcomes, the available information is clear enough, with multiple factors and aspects precisely highlighted by researchers. These findings are replicable in both scientific and practical spheres. Second, simplicity implies simple definitions of core concepts, while the MUIS allows their simple theory-to-practice application along with operability within the clinical settings. Third, generality relates to the inter-sectional applicability of the UIT in terms of care delivery and disease management in the context of several chronic and terminal illnesses. Forth, accessibility refers to a twofold nature of the theory itself. On the one hand, the empirical evidence distinctly demonstrated that the target population indeed experiences such a phenomenon as uncertainty. On the other hand, the theory-to-practice transition gives the patients and care providers an opportunity to develop effective coping strategies for dealing with diseases that are limiting the quality of human lives.

The Main Relationships between the Concepts

Relationships among the concepts are embodied in Mishel Uncertainty and Illness Scale (MUIS), enabling researchers and practitioners to measure the uncertainty as a multidimensional notion from the four main paradigms. These domains include ambiguity, complexity, inconsistency, and unpredictability. Apart from that, the developer has proposed a particular generalized algorithm for UIT-centered decision-making as shown in Figure 1 below.

Perceived uncertainty in illness

Figure 1. Perceived uncertainty in illness

On the grounds of healthcare providers’ awareness about the main ideas of UIT, concepts, and assumptions, specialists can develop well-thought-out communication strategies in terms of diagnosing the patients, informing them about the specificities of their disease, and presenting relevant and ample information for dispelling one’s uncertainty to the greatest degree possible. Hence, the effectiveness of the UIT on the basis of these relationships can be measured with respect to uncertainty-preventive and copying models.

Origins of the Theory

Regardless of the fact that a number of acute pain, chronic and terminal disease patients have increasingly grown on the verge of the 20th and 21st centuries, the determinants of the outcomes on the administered treatment and care varied between different patients. Moreover, there was a lack of systemic investigation of uncertainty as a notable variable that is capable to impact the appraisal of the illness-related events. In addition, even population unawareness of specific living circumstances with regard to such types of illnesses was a sufficient drawback in developing treatment strategies. Psycho-social aspects of treating acute injuries, as well as life-threatening diseases were underestimated in the treatment administration and care delivery, which substantially impacted the overall state of the patient. Therefore, such a vivid inconsistency in the field and flawed outcomes of patient and care delivery required a framework to be developed in order to fill in this theory-to-practice gap.

The motivation of the Theory Development

Mishel is a conceptualist of the UIT. The actual framing of this hypothesis can be largely attributed to the empirical evidence he has collected from his real-life experience. To be more precise, the widely recognized author of the UIT has referred to his father’s terminal illness and his individual struggle with the disease as the primary data for a future hypothesis. Thus, such a personal experience has become an underpinning of his theory-shaping process. At the same time, it is relevant to note that the initial measurement framework was developed in 1981, while the theory was revised and refined in 1988. The basis for the theory advancement has become the scholar’s phenomenological exploration during her work on the doctoral dissertation of breast, prostate, head, and neck cancer patients as well as individuals who had traumatic injuries. Finally, too little recognition of the role of this concept in care delivery and patient care management along with fragmented coverage of its constituents as for the late 1970s have become another stimulus for the scholar in her theory-advancement aspirations.

The Evidence Background Utilized in the UIT

On a similar note, the framework has also a number of supporting arguments derived by the conceptualist from the previous research. As Mishel (2014) has explained, the UIT has become “a synthesis of the research on uncertainty, cognitive processing, and managing threatening events.” Whereas the mid-range theory is based on the intersection of at least three aforementioned disciplines, the scholarly contributions in these areas were utilized by the theorist in her theory development process. In particular, Mishel (2014) has admitted influencing on her theory articulation from a number of related scientific domains, including:

  • exploration of the central concept as a cognitive stressor by Lazarus (1974), Bower (1978), Budner (1962) and Shalit (1977);
  • Norton’s (1975) work regarding uncertainty as an eight-dimensional phenomenon, as well as related investigations by Moos and Tzu (1977);
  • studies conducted on the grounds of MUIS, such as those about symptom patterns (Mishel & Murdaugh, 1987), cognitive capacities (Mandler, 1979), critical social theory (Allen, 1985; Mishel, 1990), chaos theory (Prigogine & Stengers, 1984), and loss of coherence sense and ongoing disorganization (Antonovsky, 1987), to list a few.

In any case, it is evident that the UIT has been developed as a result of the incredible efforts of the scholar based on more than abundant scientific and empirical evidence.

Utility

The Usefulness of the Theory in Practice

Regardless of the fact that the UIT was conceptualized in the late 1980s, its operability and value for contemporary practice should not be underestimated. Foremost, the theory has allowed bridging the theory-to-practice gap that combined the physical care delivery to patients with acute pain injuries and chronic and life-threatening diseases with psycho-social antecedents of such care. In this light, the UIT provided both practitioners and target populations with a possibility to approach care from a thorough and holistic perspective. Such a framework enticed rather comprehensive care provision and more quality of life for patients diagnosed with any of these health conditions. Of course, the abovementioned opportunity relates to those diseases that are accurately researched by scholars. The complex nature of uncertainty has been carefully translated into a simple-to-use and easily accessible operational model allowing the smooth and well-thought-out overall organization of care delivery to the target audience. At the same time, certain areas require the collection of clinical evidence, such as hypoplastic left heart syndrome (HLHS).

A Case Study: HLHS

HLHS is a cardiologic disease of a very complicated nature whereas this state implies an inborn heart defect of an infant and serious illness immediately after birth. Undoubtedly, this relates to life-threatening cardiac health concerns minimizing the life quality and lifetime of such patients and their parents. Since the disease can be treated only in a surgical way or through transplantation, the uncertainty concept is more than relevant to such cases. The issue is especially acute due to high mortality rates among such patients: However, this cognitive state is more relevant to families of such children, unless the latter is enough old to cognitively comprehend the acuteness of their disease.

While HLHS is evidenced to be one of the most common serious cardiac defects diagnosed prenatally, no study was found that would have analyzed the disease in light of the UIT. At the same time, the application of this theory would be of great assistance in developing effective coping strategies for patients who suffer from such conditions and for their families. For instance, their parents evidently experience an “uncertainty about outcomes” with regard to surgery-related risks and their children’s survival. This cognitive stressor can be eased through providing them information about the decreased mortality rates among the patients due to technological advancements as summarized in Table 1 below.

HLHS operations

Figure 2. The number of HLHS operations performed in the European Association for Cardio-Thoracic Surgery Congenital Heart Surgery by year

These data would be useful in terms of stimuli framing and using the cognitive capacities of the target audience to further develop stress-copying skills. Moreover, whereas patients having life-threatening conditions tend to believe that medical practitioner is credible sources of disease-related information, this factor can also be used in the creation of a successful uncertainty-copying strategy. Such awareness is likely to provide information and support that will maintain and improve the quality of life. Moreover, it will be easier for the target population to appraise uncertainty in light of an opportunity, even though a risky one, rather than a danger. It follows that the UIT can be used as an efficient tool for the development of coping strategies for the target audience if utilized appropriately and in a well-planned manner.

Testability

Whereas the testability of a theory defines its relevance and practicability, this issue is necessary to be discussed in the paper as well. The more theory is tested within the domains of research and practice, the higher its validity is.

The UIT Research Paradigms

Drawing upon the scholarship analyzed in the context of this essay, researchers have mostly applied the UIT in order to study the most common life-threatening and terminal illnesses related to acute pain, novel or sudden illness and unpredictable courses of disease development. The latter mostly refer to cardiac and chronic illness of the population as well as to different types of cancer. Therefore, the researchers’ interest has been majorly linked to the central ideas that are promoted by this theory. Namely, the primary research area concerned an in-depth exploration of uncertainty-focused concepts in the target population with respect to further practical applications of the findings in order to organize care management in a better way and to improve outcomes of care for the patients.

Simultaneously, in the more recent studies, the UIT was used for comparative analyses between at-risk and control groups. For instance, Fishbain et al. (2010) have investigated the multidimensional health condition of acute and chronic pain patients versus community patients in light of the uncertainty concept. This research paradigm allowed a comparison of 2,225 respondents’ attitudes towards chronic or terminal diseases with regard to uncertainty. In this way, the UIT-based hypothesis, which was verified by an exploration, concerned an assumption that patients with chronic illness may have difficulty adjusting to the illness if there is significant diagnostic or prognostic uncertainty.

Finally, the UIT studies can be also used as best practices in effective uncertainty management in relation to diseases included in the scope of the UIT application. To illustrate, Germino et al. (2013) have explored the UIT on the practice of young-age breast cancer survivors. A UIT-centered intervention presented to the target population in a form of video-recorded training, information booklets, and 20-minute nurse calls performed on a weekly basis has evidenced to be effective. Hence, the UIT knowledge accumulated in terms of this disease allowed the development of such a multifaceted strategy in a cost- and time-efficient manner and tested its validity. The research findings clearly demonstrated decreased patient uncertainty levels due to the easy accessibility of credible and relevant information about their health condition.

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A UIT-Based Study Example

Among the recent investigations in the field, research conducted by Italian scientists can be a vivid example of the UIT application that is bridging theory-to-practice in an efficient manner. Giamanco et al. (2014) have researched another important update in expanding the scope of the UIT paradigms linked to multiple sclerosis as a chronic disease with a sufficient degree of uncertainty aspects. While the disease heavily impacts life quality for the people suffering from it, validation of the MUIS framework within the Italian context was a scholarly novelty, to a certain degree. Despite the fact that MUIS generally comprises of 4 uncertainty aspects, which are ambiguity, complexity, inconsistency, and unpredictability, only 2 of them were verified in the study - ambiguity and inconsistency.

The topicality and acuteness of the analyzed disease should not be underestimated. Although the rate of multiple sclerosis occurrence patients is as high as at least 63,000 young adults, with approximately 1,800 new patients diagnosed yearly, it is impossible to predict its consequences and patients’ symptoms with any degree of accuracy. It follows that the disease relates to the UIT-centered risks with too scarce data available, especially with respect to Italy. The translated from English to Italian MUIS has become a valuable tool in the uncertainty-related data collection. Specifically, the scholars have identified that the respondents experienced a lesser level of ambiguity and uncertainty only a few years after they were diagnosed, with “the loss of autonomy” and “increased disability” as the most frightening consequences.

Hence, the UIT application in the study can be regarded as an initial step in the development of the country-specific evidence-based database. On a similar note, this single study can hardly be used as a generalization point whereas the findings concerned only 120 multiple sclerosis patients. Nevertheless, the researchers have validated the UIT in the Italian context and outlined precisely the opportunities of future application of the UIT both in the country-specific perspective and with respect to effective multiple sclerosis care delivery.

Overall Evaluation

The Generalizability of the Theory

From the common-sense perspective, the UIT seems absolutely logic, clear, supported with the research-focused evidence, and valid to be generalized. This aspect can be based on the fact that Mishel (2014) has used substantial academic research from the related disciplines to shape her midrange theoretical concept, including the findings from cognitive psychology, medicine, and treatment and care management, to list a few. At the same time, empirical evidence testing the UIT is rather fragmented. On the one hand, some studies concerned a particular segment of the population, such as ethnicity or a comparison between two of them or a specified age group, or related to a single disease, e.g. breast cancer or acute injuries. On the other hand, the size of the research sample also varies between studies, which undermines an opportunity to accurately assess the generalizability of the findings. Hence, the UIT requires more thorough empirical studies in order to be validly applied to the general population with respect to every aspect of the theory.

Ethical, Cultural, and Social Policy Issues Related to the Theory

Although the 8 reviewed articles revealed no ethical, cultural or social policy concerns with regard to the UIP, such factors can be implicitly identified nevertheless. For instance, ethical dilemmas are always relevant to the diseases linked to the limited quality of life and risks of death. In this respect, researchers and practitioners have to develop some UIT-based strategies with utmost care and accuracy in order not to harm a patient. Simultaneously, the fact that scholars tend to narrow the research focus to specific cultural and ethnic groups is a very useful aspect in light of UIT findings generalizability and sensitivity. In particular, large-sample inquiries with relation to specifically distinguished cultural, ethnic and other groups would allow developing rather standardized uncertainty-minimizing schemes. This implies even faster responsiveness to the target population's needs. Finally, best practices in the field with respect to different diseases can become a sufficient foundation for social policy development and healthcare education strategies.

Strengths and Weaknesses of the UIT

Drawing upon the discussion, a number of UIT strengths can be outlined. These strong points involve but are not limited to:

  • well-utilized and multidimensional theoretical background linked to several interconnected disciplines;
  • a complex but simple-to-use operational UIT mechanism that has been verified with relation to the most common chronic, acute pain and life-threatening diseases;
  • availability of the tested best practices to be used as samples in areas of care for specified illness ;
  • an opportunity to expand the research evidence base in terms of large-sample studies, exploring the poorly examined diseases, or development and testing of social policy proposals, among others.

At the same time, a few weaknesses can be identified as well, including:

  • fragmented disease coverage, i.e. an overemphasis on commonly known ones (cancer) while other life-threatening diseases that are less studied are largely ignored, such as HLHS;
  • unclear possibility of generalizability;
  • the unexplored ethics-related domain of the theory.

The UIT vs. My Practice

On the grounds of in-depth exploration of the topic, I am more than confident that I will find room for the incorporation of the UIT, or at least its most prominent elements, in my practical experience. The information obtained in the process of investigation allows me to understand the crucial importance of cognitive stressors and related factors in patient diagnostics and delivery of care. Despite the future position in the healthcare system, I recognize that a certain degree of uncertainty exists in any of its multidimensional domains, while acute care, chronic and terminal diseases are the most vital threats to both care provision and patient outcomes. Hence, apart from the practical application of the UIT in light of the specifically targeted population, I will try to adapt the framework for care delivery to different types of patients, with various, not only life-threatening, illnesses. Indeed, quality of life relates to any healthcare-related concern, so I consider innovating this UIT research paradigm my individual contribution to the field.

Summary

The findings of the paper revealed great importance of the UIT for acute injuries, chronic and life-threatening diseases care as well as potential opportunities to expand the scope of its operability. First, the essay summarized the hypothesis introduced by Mishel while examining the origins of its conceptualization and development. In accordance with the review, the theory has a well-reasoned and interdisciplinary background which presumed its sufficient validity and credibility in light of strong connections with the findings of precursors. Furthermore, the UIT showed a substantial value for both practice and research in terms of identification of cognitive stressors and uncertainty-related factors of the identified disease forms as a basis for creating efficient coping strategies. Apart from that, an overall evaluation of UIT is conducted in light of its:

  • generalizability;
  • ethical, cultural, and social policy issues linked to the hypothesis;
  • strengths and weaknesses it has utilized;
  • applicability of the framework to my individual practice.

Specifically, the gap in research was traced with respect to HLHS which was not explored through the prism of the UIT, though this cardiac health concern relates to the target population to a great extent. Moreover, a brief list of other relevant suggestions was offered in the evaluation section, including the perspectives of UIT for future research and application in my individual practice.

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