Concept Clarification: Uncertainty in Individuals with Chronic Kidney Disease.
When uncertainty is used to describe the experience of illness, however, the context is more complex. Conceptually defining uncertainty in the context of illness rather than merely by the dictionary definition allows healthcare professionals to begin to glean the meaning of the illness experience of individuals experiencing uncertainty (Chinn & Kramer, 2011). Yet the concept of uncertainty must be altogether understood in order to glean the meaning. There are different experiences of uncertainty among the various types of illness experiences. Experiences in individuals in intensive care differ from those who suffer from chronic conditions, as do experiences of the informal caregivers. Creating specific conceptual definitions for each of these experiences provides more meaningful insight into uncertainty in illness.
The literature has shown that uncertainty is a relevant concept for individuals with CKD (Green & Boulware, 2016; Harwood & Clark, 2014; O'Hare, Allon, & Kaufman, 2010). Some negative consequences for individuals with CKD with unresolved uncertainty could be impaired dialysis decision-making ability (Schell, Patel, Steinhauser, Ammarell, & Tulsky, 2012), neglect of self-care, and/or lack of adherence to CKD recommendations (Perrett & Biley, 2013). While the experience of CKD varies among individuals with the diagnosis, uncertainty is a concept that can be recognized at any point along the CKD continuum. This article seeks to clarify the concept of uncertainty in individuals with CKD and to refine the definition to provide nephrology nurses with further information to care for individuals with CKD.
According to Chinn and Kramer (2011), a concept is a "complex mental formulation of experience" (p. 158). For a concept to be useful, the name and definition must be clear so the meaning can be understood (Walker & Avant, 2011). As a concept is initially explored, it is important to determine where the concept is positioned on a continuum from empiric to abstract (Chinn & Kramer, 2011). Uncertainty in individuals with CKD resides on the relatively abstract end of the conceptual continuum described by Chinn and Kramer (2011) because there are no concrete, observable means of measurement. Due to this abstraction and lack of a specific definition, clarification of the concept of uncertainty in individuals with CKD is needed to understand criteria and boundaries.
In this article, Chinn and Kramer's (2011) method for creating conceptual meaning is applied to uncertainty in individuals with CKD. After selecting a concept and clarifying why the concept should be defined, Chinn and Kramer (2011) present five additional strategies for defining a concept: establishing criteria for the concept by reviewing current definitions; presenting an exemplar case that best represents the concept; using available literature to determine the criteria for the concept and separate the concept from related concepts; testing the criteria by providing contrary, related, and borderline cases; and formulating the final criteria and definition. Key terms for this concept clarification are presented in Table 1. Clinical application of this concept is also discussed.
Literature Review of Current Definitions of Uncertainty
Uncertainty in the context of illness has been defined by a variety of nursing scholars (Hilton, 1992; McCormick, 2002; Mishel, 1990; Penrod, 2007), with those definitions applied by many more (Checton, Greene, Magsamen-Conrad, & Venetis, 2012; Elphee, 2008; Madar & Bar-Tal, 2009; Rucker, West, & Roemer, 2010; Yu Ko & Degner, 2008). However, current definitions are intended to cover both acute and chronic illness as well as the caregivers impacted by the illness. Uncertainty in individuals with CKD has not been termed with a separate conceptual definition despite the frequency of use in this population and the distinct characteristics of CKD. The literature was reviewed with the aim of understanding the definitions and clarifying the essential characteristics of uncertainty to re-contextualize the definition for uncertainty in individuals with CKD.
Arguably the most well-known and utilized definition of uncertainty in illness is found in Mishel's Uncertainty in Illness Theory. Mishel (1990) defined uncertainty in illness as "the inability to determine the meaning of illness-related events and occurs in situations where the decision maker is unable to assign definite values to objects and events and/or is unable to accurately predict outcomes because sufficient cues are lacking" (p. 256). Mishel (1990) upheld the neutrality of the cognitive experience in which outcomes associated with uncertainty in illness were positive or negative. Her definition also explicitly included the caregiver/ decision maker. Criteria for uncertainty in illness were perception and meaning construction through inference or illusion.
In contrast, Hilton (1992) described uncertainty in the context of illness as an emotional, cognitive experience that may be positively or negatively charged, but is often threatening. Hilton (1992) defined uncertainty as "a cognitive state created when an event cannot be adequately defined or categorized due to lack of information" (p. 70). In her discussion, the definition of uncertainty was applicable to people with acute or chronic illnesses and the caregivers. Criteria found in Hilton's (1992) concept of uncertainty were the inability to organize information, unfamiliarity, inconsistency, incomplete information, and ambiguity.
In a concept advancement by Penrod (2007), another definition of uncertainty in the context of illness was presented. In this advancement, both cognitive and emotional components were present, and the experience of uncertainty in the context of illness was often accompanied by discomfort due to an inability to assign probabilities. Through the concept advancement, Penrod's (2007) prior definition of uncertainty was refined to "a perception of doubt or not knowing that is brought about by cognitive and pre-cognitive ways of knowing" (p. 664). She highlighted confidence and control as mediators to the perception of uncertainty and included the criteria of discomfort and uncertainty as a dynamic process.
Because the aim of these authors was to provide one definition of uncertainty in both acute and chronic illnesses as well as in caregivers, the definitions and criteria presented are broad and contain elements of antecedents or consequents that vary by intended population. Nevertheless, the work done by these authors is greatly valued, and elements of their work are vital to include when defining uncertainty in individuals with CKD. Beyond the definitions, the entirety of their texts provides valuable insight into the concept of uncertainty that applies to uncertainty in individuals with CKD. Further, insights from other scholars' application of the concept of uncertainty in individuals with chronic illnesses such as chronic anxiety, HIV, and post-cancer treatment-related conditions are incorporated into this review to ensure depth and clarity of understanding of the complexities of uncertainty. Together, this literature helps to clarify the definition and elements of uncertainty in individuals with CKD.
Uncertainty in Individuals with Chronic Kidney Disease--An Exemplar Case
A 70-year-old man, T.G., visits his general practitioner with a complaint of swelling in his legs. He has had difficulty managing his type 2 diabetes and hypertension since the passing of his wife two years prior. His adult children live out of state. His general practitioner ordered laboratory tests that show Stage 4 CKD. His general practitioner notifies him that his kidneys are not working well and that he needs to see a kidney doctor (nephrologist). T.G. does not understand why his kidneys do not work well anymore. Other than the swelling in his legs, he does not feel any different. He reluctantly makes the appointment to see the nephrologist.
In his first appointment with the nephrologist, T.G. is presented with copious amounts of information about CKD, treatment options, and management. When the nephrologist describes the symptoms of CKD, T.G. recognizes symptoms he has been having that he attributed to his diabetes, hypertension, or aging. The nephrologist cannot tell him when his kidneys will completely fail, but recommends he decide on a renal replacement therapy, such as hemodialysis. He is given information sheets on dietary restrictions and prescribed new medications to manage his hypertension. When T.G. returns home, he is unable to describe his nephrologist visit to his daughter. He understands that his kidneys will not get better, but he does not understand why they are failing, what to expect as the disease progresses, or why he needs to choose a dialysis treatment when he feels the same as he always has.
Defining Uncertainty in Chronic Illness
After reviewing the current literature on uncertainty from the various chronic illness perspectives, parallels between the conceptual definitions and the professional literature, as well as similarities in the experiences across these broad categories of chronic illnesses, became clear. These parallels and similarities were then refined into the criteria that delineate the fundamental characteristics of uncertainty in individuals with CKD (Chinn & Kramer, 2011). Those criteria, based on similarities of experiences used to define uncertainty in individuals with CKD, are perception of uncertainty, neutral cognitive experience, inability to derive meaning, ambiguity and complexity, and fluctuation along a continuum. Therefore, uncertainty in individuals with CKD is defined as an experience in which an individual's perception of chronic illness fluctuates along a continuum whereby ambiguity and/or complexity render the individual unable to derive meaningful value from the condition and situation.
The first criterion in this definition is the focus on the individual's perception of uncertainty (Checton et al., 2012; Hilton, 1992; McCormick, 2002; Mishel, 1990; Penrod, 2007). The observed assumption of uncertainty by healthcare professionals or caregivers may influence an individual's perception, but those assumptions may not align with the experience of uncertainty by the individual with chronic illness. There is debate around whether this perception is a neutral cognitive experience (McCormick, 2002; Mishel, 1990; Penrod, 2007) or one that includes a positive or negative emotional component (Checton et al., 2012; Hilton, 1992). In uncertainty in individuals with CKD, the emotional component is attributed to the outcome of the perception of uncertainty, not the uncertainty itself, and thus aligns with experience described by McCormick (2002), Mishel (1990), and Penrod (2007). The inability to derive meaning, to fully comprehend the complexities of the CKD illness experience, is key to differentiating uncertainty in individuals with CKD from related concepts. This lack of meaning in the illness experience (Checton et al., 2012; Hilton, 1992; McCormick, 2002; Mishel, 1990) leads to a positive or negative appraisal of the uncertainty.
Other criteria in defining uncertainty in individuals with CKD are ambiguity and complexity (Checton et al., 2012; Hilton, 1992; McCormick, 2002; Penrod, 2007; Rucker et al., 2010). Both attributes relate to the individual's perception and inability to derive meaning, as well as to the chronicity of the kidney disease and the accompanying treatments, symptoms, and comorbid conditions. Within this context, ambiguity implies vagueness or ability to attribute something to multiple sources, while complexity refers to the multifaceted factors present in the illness experience or the ability of the individual to manage his or her health. What may be burdensome for one individual may be viewed as routine by another or for the caregiver or healthcare worker.
For individuals with an acute illness, probability is a criterion where care is focused on achieving a specific outcome (Checton et al., 2012; McCormick, 2002; Mishel, 1990; Penrod, 2007). Conversely, individuals with chronic illnesses differ in that illness is not an event but a process in which managing the illness and the accompanying complexity of symptoms and complications resides in the foreground of the perception of uncertainty (Hilton, 1992; Yu Ko & Degner, 2008). Due to the complex nature and chronicity of the illness, individuals with CKD endure symptoms and complications that fluctuate in type, severity, or occurrence with no end-point (Elphee, 2008; Madar & Bar-Tal, 2009; Mishel, 1999; Yu Ko & Degner, 2008); thus, the perception of the illness changes. Therefore, the criteria of uncertainty in individuals with CKD must include the fluctuation along a continuum.
Several concepts initially appear to be synonymous with uncertainty in individuals with CKD, but upon further exploration, are in fact distinct. Anxiety is commonly associated with uncertainty. However, anxiety includes uneasiness or apprehension regarding a situation or outcome (Oxford English Dictionary, 2015). Appraisals in uncertainty in individuals with CKD are neutral, and positive or negative emotions appear as consequents rather than criteria. Anxiety may be a consequent of uncertainty in individuals with CKD. Role transition, whether personal or professional, is another concept related to individuals facing CKD. In order for an individual to experience role transition, a meaning or impact of CKD must be assigned, and the individual is able to determine that his or her role is going to change. In uncertainty in individuals with CKD, the ability to derive meaning is lacking; therefore, an individual cannot determine the impact of disease or the need to change.
Another related concept, unpredictability, also includes the individual's ability to derive meaning in the chronic illness. Unlike uncertainty, in predictability, the possible outcomes are comprehended, but when or in what manner the outcome occurs is unknown. An individual's assignment of predictability, whether true or not, may positively impact uncertainty.
One final related concept is ambiguity. As a separate concept, ambiguity refers to a lack of clarity about or a variety of meanings in a specific event. As a criterion of uncertainty in individuals with CKD, ambiguity contributes to the individual's inability to derive meaning within the chronicity and complexity of the illness.
Challenging the Criteria
Building alternative cases can help establish boundaries and clarify what the concept definitely is not. Chinn and Kramer (2011) describe three exemplar cases that challenge the criteria of a concept: contrary, related, and borderline cases. The contrary case represents what uncertainty in CKD is not. The related case illustrates one of the related concepts where there is overlap, but the distinctions between the concepts remain clear to clarify boundaries. The borderline case depicts what could be described as an experience of uncertainty in individuals with CKD but in a case that does not meet the criteria delineated for the concept.
A.M., a 47-year-old female, has been seen by a nephrologist since her diagnosis of primary focal segmental glomerular sclerosis (FSGS) four years ago. She was diagnosed by biopsy after discovering marked proteinuria and is in Stage 2 CKD. She has good communication with her nephrologist's office; understands how to manage the changes in her diet, blood pressure, and medications; and knows when to call the office for further assistance or clarification. She has been hospitalized once for an unrelated medical procedure--a knee replacement. While her symptoms vary in intensity and frequency, A.M. is able to derive meaning from the symptoms and understands how to manage her condition. Even though her progression through the CKD stages is unpredictable, A.M. understands how her treatment plan relates to her FSGS and the associated symptoms.
B.C., a 32-year-old female, was diagnosed with systemic lupus erythematosus (SLE) two years ago. She and her husband have one child and were trying to conceive again prior to her diagnosis. After diagnosis, B.C. and her husband read all the information about SLE they could find and made frequent trips to the rheumatologist with questions. B.C. is anxious when she learns that SLE can lead to kidney failure and requests to see a nephrologist. The nephrologist evaluates her and determines that B.C. has only mild kidney involvement. The nephrologist tells her that with good management of her SLE, she may never progress to kidney failure. Despite this, B.C. is anxious about needing dialysis. She reacts apprehensively to any ambiguous physical change or symptom, and quickly searches for a link to her kidneys. Her disease progression is not predictable based on her symptomatology, and she often speaks to her husband about the distress she feels "waiting for the ball to drop." B.C. exemplifies anxiety rather than uncertainty in individuals with CKD in that she has derived meaning from the diagnosis, and the unpredictability of the symptoms lead to uneasiness and apprehension.
N.P. is a 58-year-old man with poorly controlled type 2 diabetes. His endocrinologist has been forthcoming about the complications that occur when diabetes is not well controlled. At his most recent visit, his endocrinologist tells him that his laboratory values indicate kidney disease and that he will need to see a nephrologist. N.P. is shocked that his kidneys are not working well. His friend who has had diabetes longer than he has eats even more poorly than N.P., and he seems fine. He knew that the kidneys could be impacted, but he thought that was farther down the road.
Before visiting the nephrologist, N.P. talks to some people he knows who are on dialysis. They tell him the nurses are nice and do all the work for you. When he visits the nephrologist, he is told that his kidneys are still functioning well enough that he does not need dialysis immediately. N.P. is relieved. When N.P. asks when he will need dialysis, the nephrologist cannot give him a definitive answer. He is provided information on all treatment options and how to manage CKD. Many symptoms seem like ones he has already. When he leaves the office, he plans to take better care of his diabetes.
N.P. is in a similar situation as the gentleman in the exemplar case, T.G. They are both surprised that their kidneys are not working well because they do not feel any different. They both have symptoms of CKD they attributed to other causes. Additionally, neither man receives an answer about when his kidneys will fail. However, while T.G. was unable to process all of the information or understand his new reality with CKD, N.P. has created meaning out of his diagnosis. N.P. talks to people on dialysis about their experiences and chooses to improve his health by better managing his diabetes.
Antecedents are the factors that precede and impact the experience of uncertainty (Walker & Avant, 2011). The antecedents to uncertainty in individuals with CKD can be described within three categories: characteristics of the illness, personal traits that impact the inability to derive meaning, and vulnerability. All factors in these categories address the importance of the individual perception of illness and the chronicity of the situation. The first category addresses the illness itself, while the second and third categories address personality traits and vulnerability issues.
The first category, characteristics of the illness, differentiates situations that are uncertain from those that have a predictable trajectory. The severity or erratic nature of a disease process has impact on the ambiguity and complexity in uncertainty in individuals with CKD (Checton et al., 2012; Elphee, 2008; Hilton, 1992; Mishel, 1999). There is currently no definitive metric to predict CKD progression. Symptoms may seem unrelated and change over the course of life, with the illness making the discussion of renal replacement therapies seem premature. This ambiguity and fluctuation leads to the dynamism of uncertainty as perceptions change depending on the current symptom burden load.
The next antecedent category focuses on personal traits that impact the inability to derive meaning. The first two factors that impact uncertainty in individuals with CKD are concept of self and the perceived role the individual fills in his or her life (Mast, 1995; McCormick, 2002; Mishel, 1999). The prior factor underscores the individual's ability to manage change, which may prevent or magnify uncertainty in individuals with CKD, while the latter could be a precursor to a greater perceived change or influence the ability to derive meaning. An individual's general out look on living with CKD is another factor that impacts uncertainty in individuals with CKD. The outlook, whether motivating or threatening, can change the perception of uncertainty in individuals with CKD (Checton et al., 2012; Mast, 1995; Mishel, 1990, 1999; Rucker et al., 2010). An additional personal trait that impacts uncertainty in individuals with CKD is coping style (Elphee, 2008; Hilton, 1992). Individuals who have established positive mechanisms for coping may not experience uncertainty or may appraise uncertainty in individuals with CKD differently than those who lack experience with coping.
Vulnerability, as an antecedent category to uncertainty in individuals with CKD, is multifactorial. Information is a key component to whether or not an individual perceives uncertainty and to what degree (Checton et al., 2012; Elphee, 2008; Hilton, 1992; Madar & Bar-Tal, 2009; McCormick, 2002; Penrod, 2007; Rucker et al., 2010; Yu Ko & Degner, 2008). Lack of information may lead to increased ambiguity, probabilistic information may give hope or meaning, and too much information may add to the complexity of the situation. Additionally, the individual's previous experiences and knowledge about the illness, or the lack thereof, influence how the information presented is perceived. Another factor in vulnerability is social support (Checton et al., 2012; Elphee, 2008; Hilton, 1992; Madar & Bar-Tal, 2009; McCormick, 2002; Mishel, 1990; Yu Ko & Degner, 2008). This support can come from healthcare providers, family, caregivers, friends, or the community. The amount and appropriateness of support impacts the perception and derivation of meaning in uncertainty in individuals with CKD. An additional factor in vulnerability is whether or not the individual associates stigma with CKD (Checton et al., 2012; Perrett & Biley, 2013). Holding a negative association with the illness can alter the perception of living with the illness.
Consequents are the outcome of a phenomenon, the events or emotions that follow the experience of uncertainty (Walker & Avant, 2011). Living with uncertainty in individuals with CKD has consequents that may be described by the individual as positive or negative. Often, noted consequents are ones that cause the individual distress; however, it is important to also discern how uncertainty can result in positive outcomes (Chinn & Kramer, 2011). Fear is commonly associated with uncertainty in individuals with CKD (Checton et al., 2012; Elphee, 2008; Hilton, 1992; Penrod, 2007; Perrett & Biley, 2013). Stress and anxiety are also frequently noted consequents (Elphee, 2008; Hilton, 1992; Madar & Bar-Tal, 2009; McCormick, 2002; Rucker et al., 2010; Yu Ko & Degner, 2008). All three of these consequents result from a discouraging appraisal of uncertainty in individuals with CKD and produce the undesired outcomes presented above, impaired decision-making ability, neglect of self-care, or lack of adherence to CKD recommendations.
In contrast, some individuals are empowered by their appraisals and seek opportunities as they adapt to life with uncertainty (Checton et al., 2012; Mishel, 1990; Perrett & Biley, 2013). This may be due to uncertainty allowing an individual with CKD to escape from the reality of the severity of the illness and to form a worldview that is positive (Mishel, 1999). An individual's coping ability could also be an outcome altered by the lack of meaning in uncertainty but can be either positively or negatively associated. The individual with CKD may form coping skills that help mitigate negative consequents and help reduce uncertainty or form inappropriate or insufficient skills that exacerbate uncertainty in individuals with CKD and the other negative consequents (Mishel, 1990).
Uncertainty in individuals with CKD has two related mediator groups: confidence and control, and chronicity. The presence of either of these groups may impact whether or not uncertainty in individuals with CKD occurs. The first group contains confidence and control described by Hilton (1992), McCormick (2002), and Penrod (2007). As an individual's confidence to manage CKD increases, he or she feels better able to control the antecedents that are increasing uncertainty. Likewise, an individual with CKD in an uncertain state may gain confidence in living with uncertainty and be able to control the appraisal of the illness and adapt to a more positive outlook.
The second group of mediators relates to the chronicity of uncertainty: the length of time an individual is exposed to uncertainty and a change in perception about the illness (Penrod, 2007). The longer an individual lives with uncertainty, the more likely the antecedents and his or her perception about the illness are to change. This chronicity may decrease uncertainty because the individual is now able to derive meaning from the situation. Conversely, if symptoms change in type or intensity over time, uncertainty in individuals with CKD may be amplified. Additionally, the individual with CKD could either better adapt to living with uncertainty or become fatigued by uncertainty as time advances and perceptions of the illness change. Both mediator groups can function on either side of the concept of uncertainty in individuals with CKD and provide a positive or negative impact.
Nephrology nurses have the opportunity to assess for uncertainty in individuals with CKD. Uncertainty in individuals with CKD is internal to the individual, not assumed by an external source, such as a caregiver or healthcare worker. If the individual is not asked about uncertainty, the experience of uncertainty in individuals with CKD may go unrecognized or mislabeled. Individuals who express struggles with stress and anxiety may not perceive uncertainty as a causative factor, or as previously discussed, uncertainty can have positive consequents, making the uncertainty harder to recognize. Understanding the concept of uncertainty in individuals is important for everyone involved in the care of an individual with CKD, including the individual.
Nurses often take the opportunity to allow individuals to express a holistic view of their illness experiences. Whether or not uncertainty in individuals with CKD is a part of that experience is important to determine. If an individual presents with a of lack of adherence to the plan or reports confusion about the CKD treatment plan or advanced ESRD planning, the antecedents and consequents of the uncertainty in individuals with CKD should be identified. Tools focused on uncertainty in illness could be employed to elicit more information. The nurse then has the opportunity to work with the individual and chosen informal caregivers to understand how to best reduce distressing uncertainty and support those who have positively charged consequents. This assessment of uncertainty in individuals with CKD is also essential to share among the healthcare team. In one example, while lack of information may lead to uncertainty in some individuals, too much information may add to the inability to derive meaning in others. Knowing how much, what type, and in what manner information supports an individual with uncertainty allows providers, social workers, nutritionists, and therapists to tailor education that may alter the individual's ability to derive meaning about CKD.
In conclusion, uncertainty is an important concept to understand and to assess in individuals with CKD. This article began the process of clarifying the concept of uncertainty, specifically for individuals with CKD. Further work is needed to analyze the criteria and better understand the role of the mediators. Due to the abstract nature of the concept, operationalizing uncertainty in individuals with CKD is challenging. An individual's self-report is the only valid measure of uncertainty in individuals with CKD; however, antecedents, consequents, and mediators can be evaluated to provide areas of intervention.
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Sarah Llewellyn, MN, RN, is a PhD Candidate, University of Washington, Seattle, WA, and a Jonas Nurse Leader Scholar.
Funding acknowledgement: During the preparation of this article, Sarah Llewellyn received financial support from The Katherine Hoffman Endowed Fellowship for Nursing Science, the T32 Aging and Informatics Fellowship Grant at the University of Washington Grant Number T32NR014833-01, the Zesbaugh Scholarship University of Washington, and the Jonas Center for Nursing and Veterans Healthcare Fellowship.
Statement of Disclosure: The author reported no actual or potential conflict of interest in relation to this continuing nursing education activity.
Note: The Learning Outcome, additional statements of disclosure, and instructions for CNE evaluation can be found on page 519.
Table 1 Key Terms and Definitions Term Definition Concept * Made up of three things: the word or label, the thing itself (such as an event), and the feelings/ values associated with the word. Criteria * Succinct statements that describe the essential characteristics of the concept, also known as critical attributes. Exemplar Case * A presentation of the best example of the concept. Contrary Case * A presentation of an example that may be similar in some respects but is certainly not the same concept. Related Case * A presentation of an example of a different but similar concept. Borderline Case * A presentation of an example of pseudo use of the concept, using the same word with different meaning. Antecedents ** Factors that come before the concept occurs. Consequents ** The outcome of a phenomenon; the events or emotions that follow the experience of the concept. Sources: * Chinn & Kramer, 2011; ** Walker & Avant, 2011.
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|Publication:||Nephrology Nursing Journal|
|Date:||Nov 1, 2017|
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