I’ve been working on tying Uncertainty in Illness theory with theories of information seeking.I’m still writing up the section on ESRD/CKD specific uncertainty, but this is what I wrote today. It’s a broad overview of the theory. I have yet to write the preceding section, which deals with information seeking behavior, but that should be relatively straightforward.
Right now I am thinking about how information seeking to reduce uncertainty leads to information sharing. I have a few ideas about this transition, and I’m eager to get them written down and to share them with y’all.
Although much work has been done in information science that links information seeking with a gap in knowledge or the desire to reduce uncertainty, to this researcher’s knowledge no one has linked a theoretical framework of medical uncertainty with information behavior. This section of the review explores the theory of uncertainty in illness, originally developed by Dr. Mishel in the field of nursing as a theory for acute illness and later extended to chronic disease, as a particular type of information gap that leads to information seeking and sharing behaviors.
Uncertainty in illness is defined as “the inability to determine the meaning of illness-related events” (Mishel, 1988, p. 225). In many cases, uncertainty can negatively impact the patient’s quality of life, their ability to self-manage their care, and can impact their decision-making capabilities with respect to medical compliance (CITE). Uncertainty is the largest contributor to stress in peritoneal dialysis patients (Madar & Bar‐Tal, 2009), and patients on dialysis are likely to feel uncertain as they continue to wait for a transplant (Martin et al., 2010). The theory of uncertainty in illness explains how patients make and determine meaning throughout their illness experience (Mishel, 1981). While this theory was initially developed in cancer research, there is a growing body of literature that successfully applies the theory to patients with ESRD and CKD (Madar & Bar‐Tal, 2009; Maikranz, Steele, Dreyer, Stratman, & Bovaird, 2007; Martin, Stone, Scott, & Brashers, 2010; Russell & Brown, 2002; Scott, Martin, Stone, & Brashers, 2011; Stoeckle, 1993; Tong, Lowe, Sainsbury, & Craig, 2008; Weems & Patterson, 1989).
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. 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. An example of a stimulus is the diagnosis of ESRD. There are three components to the stimuli frame: symptom pattern, or the consistency of symptoms; event familiarity, which refers to the repetitive or habitual nature of the situation; and event congruence, which is how consistent the patient’s expectations are with the experience of the situation in question. Cognitive capacity and structure providers are both variables that act on the stimuli frame: a reduced cognitive capacity makes it more difficult to perceive and understand the stimuli, and reduced structure providers – the resources available to help the patient in interpreting the stimuli – also hamper the individual’s capacity to make sense of the stimuli in question. There are three major structure providers: credible authorities, social support, and education. Credible authorities are health care providers that patients trust and have confidence in, and they strengthen the stimuli frame through the provision of information about symptoms, treatment, and disease progression. Social support acts on all types of uncertainty by giving patients a network for information seeking and sharing, emotional coping, and tangible help. Of particular interest is the reduction of uncertainty by sharing information with other individuals in the support network, which Mishel & Braden argue helps patients to reduce the ambiguity about their illness by helping them to correctly appraise their symptoms (1988). Finally, education influences uncertainty by providing context and meaning to illness-related events, providing structure to the stimuli (Mishel, 1988).
It is vital to note that uncertainty is not inherently dangerous or undesirable. Uncertainty must be appraised and evaluated before determining whether it needs to be embraced or avoided. Uncertainty can be an opportunity, particularly when it facilitates hope in the patient (Holmes & Houston, 1974 – add to Zotero correctly). When negative certainty is the alternative, many patients choose instead to live in a state of uncertainty.
For chronically ill individuals, managing uncertainty is a lifelong task (Mishel & Murdaugh, 1987). When events occur that are unfamiliar, incongruous, or do not fit the patient’s usual symptom pattern, uncertainty is triggered. In CKD and ESRD, these events are varied but somewhat predictable. The trajectory of CKD is different for every patient and depends on whether they choose to go on dialysis, are eligible for a transplant, and if they have been diagnosed with other comorbid conditions (Murtagh, Murphy, & Sheerin, 2008). In the patient population of focus for this review – individuals with Stage IV CKD and patients with ESRD – individuals are facing dialysis, kidney transplant, or conservative management of the disease, which means foregoing dialysis or transplant (CITE).
According to research conducted with 8 pre-transplant and 30 post-transplant kidney, heart, liver, and kidney/pancreas patients, individuals experience three types of uncertainty throughout the transplant trajectory: medical, personal, and social (Martin et al., 2010). Medical uncertainty is most prominent in a health care environment, and deals with issues of diagnosis, symptom patterns, disease progression and prognosis, and healthcare systems. Personal uncertainty stems from the complex, conflicting roles of the patient; for example, their “sick role” vs. their “well role,” and the unclear financial consequences of the disease. Social uncertainty is concerned with the unpredictable interpersonal reactions and the unclear implications illness has for relationships, such as social isolation and the impact of illness on dating or marriage (Brashers et al., 2003).
- Brashers, D. E., Neidig, J. L., Russell, J. A., Cardillo, L. W., Haas, S. M., Dobbs, L. K., Garland, M., et al. (2003). The medical, personal, and social causes of uncertainty in HIV illness. Issues in Mental Health Nursing, 24(5), 497–522.
- Madar, H., & Bar‐Tal, Y. (2009). The experience of uncertainty among patients having peritoneal dialysis. Journal of Advanced Nursing, 65(8), 1664–1669. doi:10.1111/j.1365-2648.2009.05013.x
- Maikranz, J. M., Steele, R. G., Dreyer, M. L., Stratman, A. C., & Bovaird, J. A. (2007). The Relationship of Hope and Illness-Related Uncertainty to Emotional Adjustment and Adherence Among Pediatric Renal and Liver Transplant Recipients. Journal of Pediatric Psychology, 32(5), 571 –581. doi:10.1093/jpepsy/jsl046
- Martin, S. C., Stone, A. M., Scott, A. M., & Brashers, D. E. (2010). Medical, Personal, and Social Forms of Uncertainty Across the Transplantation Trajectory. Qualitative Health Research, 20(2), 182 –196. doi:10.1177/1049732309356284
- Mishel, M. H. (1981). The measurement of uncertainty in illness. Nursing Research, 30(5), 258–263.
- Mishel, M. H. (1988). Uncertainty in illness. Image: The Journal of Nursing Scholarship, 20, 225–232.
- Mishel, M. H., & Braden, C. J. (1988). Finding meaning: Antecedents of uncertainty in illness. Nursing Research.
- Mishel, M. H., & Murdaugh, C. L. (1987). Family adjustment to heart transplantation: Redesigning the dream. Nursing Research, 36 (6), 332–338.
- Murtagh, F. E. M., Murphy, E., & Sheerin, N. S. (2008). Illness Trajectories: An Important Concept in the Management of Kidney Failure. Nephrology Dialysis Transplantation, 23(12), 3746–3748. doi:10.1093/ndt/gfn532
- Russell, C. L., & Brown, K. (2002). The effects of information and support on individuals awaiting cadaveric kidney transplantation. Progress in Transplantation, 12(3), 201–207.
- Scott, A. M., Martin, S. C., Stone, A. M., & Brashers, D. E. (2011). Managing multiple goals in supportive interactions: using a normative theoretical approach to explain social support as uncertainty management for organ transplant patients. Health Communication, 26(5), 393–403. doi:10.1080/10410236.2011.552479
- Stoeckle, M. L. (1993). Waiting for a second chance at life: An examination of health-related hardiness, uncertainty, power, and the environment in adults on the kidney transplant waiting list. Unpublished doctoral dissertation, University of Cincinnati: Cincinnati.
- Tong, A., Lowe, A., Sainsbury, P., & Craig, J. C. (2008). Experiences of Parents Who Have Children With Chronic Kidney Disease: A Systematic Review of Qualitative Studies. Pediatrics, 121(2), 349 –360. doi:10.1542/peds.2006-3470
- Weems, J., & Patterson, E. T. (1989). Coping with uncertainty and ambivalence while awaiting a cadaveric renal transplant. ANNA Journal / American Nephrology Nurses’ Association, 16(1), 27–31.