The Theory of Illness Trajectory* addresses these theoretical pitfalls by framing this phenomenon within a sociological perspective that emphasizes the experience of disruption related to illness within the changing contexts of interactional and sociological processes that ultimately influence the person’s response to such disruption. This theoretical approach defines this theory’s contribution to nursing: coping is not a simple stimulus-response phenomenon that can be isolated from the complex context of life. Life is centered in the living body, therefore physiological disruptions of illness permeate other life contexts to create a new way of being, a new sense of self. Responses to the disruptions caused by illness are interwoven into the various contexts encountered in one’s life and the interactions with other players in those life situations.

Within this sociological framework, Wiener and Dodd address serious concerns regarding conceptual overattribution of the role of uncertainty for understanding responses to living with the disruptions of illness (Wiener & Dodd, 1993). An old adage tells us that nothing in life is certain, except death and taxes. Living is fraught with uncertainty, yet illness (especially chronic illness) compounds uncertainty in profound ways. Being chronically ill exaggerates the uncertainties of living for those who are compromised (i.e., by illness) in their capability to respond to these uncertainties. Thus, although the concept of uncertainty provides a useful theoretical lens for understanding the illness trajectory, it cannot be theoretically positioned so as to overshadow conceptually the dynamic context of living with chronic illness.

In other words, the illness trajectory is driven by the illness experience lived within contexts that are inherently uncertain and involve both the self and others. The dynamic flow of life contexts (both biographical and sociological) creates a dynamic flow of uncertainties that take on different forms, meanings, and combinations when living with chronic illness. Thus, tolerating uncertainty is a critical theoretical strand in the Theory of Illness Trajectory.

As the data for the larger study were analyzed, it became apparent to Dodd (principal investigator) that the qualitative interview data held significant insights that could further inform the study. Wiener, a grounded theorist who collaborated with Strauss, one of the method’s founders, was subsequently recruited to conduct secondary analysis of interview data. It should be noted that grounded theory methods typically involve a concurrent, reiterative process of data collection and analysis (Glaser, 1978; Glaser & Strauss, 1965). As theoretical insights are identified, sampling and subsequent data collection are theoretically driven to flesh out emergent concepts, dimensions, variations, and negative cases. However, in this project, the data had been collected previously using a structured interview guide; thus, this was a secondary analysis of an established data set.

Wiener’s expertise in grounded theory methods permitted the adaptation of grounded theory methods for application to secondary data that proved successful. In essence, the principles undergirding analyses (i.e., the coding paradigm) were applied to the preexisting data set. The analytical inquiry proceeded inductively to reveal the core social-psychological process around which the theory is explicated: tolerating the uncertainty of living with cancer. Dimensions of the uncertainty, management processes, and consequences were further explicated revealing the internal consistency of the theoretical perspective of illness trajectory.

When considering the use of adapted grounded theory methods to analyze preexisting empirical evidence, several insights support the integrity of this work. First, Wiener was well prepared to advance new applications of the method from training and experience as a grounded theorist. The methodological credibility of this researcher supports her extension of a traditional research method into a new application within her disciplinary perspective (sociology). Further support is from the size of the data set: 100 patients and families were interviewed 3 times each, for a total of 300 interviews, a very large data set for a qualitative inquiry. Oberst pointed out that given this volume of data, some semblance of theoretical sampling (within the full data set) would likely be permitted by the researchers (Oberst, 1993). But the sheer size of the data set does not tell the whole story.

Sampling patients who had a relatively wide range of types of cancers (ranging from gynecological cancers to lung cancer) and both patients undergoing initial chemotherapeutic treatment and those receiving treatment for recurrence contributed significantly to variation in the data set. These sampling strategies ultimately contributed to establishing an appropriate sample, especially for revealing a trajectory perspective of change over time. Finally, despite the structured format of the interview, it is important to note that the patients and families dialogued about the previous month’s events in a form of “brainstorming” (Wiener & Dodd, 1993, p. 18). This technique allowed the subjects to introduce almost any topic that was of concern to them (regardless of the subsequent structure of the interview). The audiotaping and verbatim transcription of these dialogues contributed to the variation and appropriateness of the resultant data set. Therefore, it may be concluded that empirical evidence culled through the interviews conducted in the larger study provide adequate and appropriate data for a secondary analysis using expertly adapted grounded theory methods.

The Theory of Illness Trajectory encompasses not only the physical components of the disease, but the “total organization of work done over the course of the disease” (Wiener & Dodd, 1993, p. 20). An illness trajectory is theoretically distinct from the course of an illness. In this theory, the illness trajectory is not limited to the person who suffers the illness. Rather, the total organization involves the person with the illness, the family, and health care professionals who render care.

Also, notice the use of the term work. “The varied players in the organization have different types of work; however, the patient is the ‘central worker’ in the illness trajectory” (Wiener & Dodd, 1993, p. 20). This statement reaffirms an earlier assertion in illness trajectory literature (Fagerhaugh, Strauss, Suczek, et al., 1987; Strauss, Corbin, Fagerhaugh, Glaser, et al., 1984). The work of living with an illness produces certain consequences that permeate the lives of the people involved. In turn, consequences and reciprocal consequences ripple throughout the organization, enmeshing the total organization with the central worker (i.e., the patient) through the trajectory of living with the illness. The relationship among the workers in the trajectory is an attribute that “affects both the management of that course of illness, as well as the fate of the person who is ill” (Wiener & Dodd, 1993, p. 20).

The context for the work and the social relationships affecting the work of living with illness in the Theory of Illness Trajectory is based in the seminal work of Corbin and Strauss (1988). As the central worker, actions are undertaken by the person to manage the impact of living with illness within a range of contexts, including the biographical (conception of self) and the sociological (interactions with others). From this perspective, managing disruptions (or coping with uncertainty) involves patient interactions with various players in the organization as well as external sociological conditions. Given the complexity of such interactions across multiple contexts and with the numerous players throughout the illness trajectory, coping is a highly variable and dynamic process.

Originally, it was anticipated that the trajectory of living with cancer had discernible phases or stages that could be identified by major shifts in reported problems, challenges, and activities. This was the rationale for collecting qualitative data at three points during the chemotherapy treatment. In fact, this notion did not hold true: the physical status of the patient with cancer and the social-psychological consequences of illness and treatment were the central themes at all points of measurement across the trajectory.

The authors conceptually equate uncertainty with loss of control, described as “the most problematic facet of living with cancer” (Wiener & Dodd, 1993, p. 18). This theoretical assertion is reflected further in the identification of the core social-psychological process of living with cancer, “tolerating the uncertainty that permeates the disease” (p. 19). Factors that influenced the degree of uncertainty expressed by the patient and family were based in the theoretical framework of the total organization and external sociological conditions, including the nature of family support, financial resources, and quality of assistance from health care providers.

In an earlier response article to the original publication, Oberst (1993) took issue with the delimitation of the concept of uncertainty to loss of control. This criticism was echoed by McCormick (2002), who theoretically positioned loss of control in the uncertainty cycle rather than as a manifestation of a state of uncertainty. In their work on end-of-life caregiving, Penrod and colleagues (2012, 2011) posit that minimizing uncertainty by increasing confidence and control is desirable for patients and their family caregivers transitioning through the end-of-life trajectory. Further research into the concept of control is warranted to untangle the conceptual boundaries and linkages between control and uncertainty throughout the illness trajectory.

Other researchers have criticized the implicit assertion that uncertainty (or loss of control) is always a negative event that requires some form of abatement (Oberst, 1993; Parry, 2003). Oberst (1993) suggested the need for further investigation to differentiate work related to tolerating uncertainty from abatement work in order to reveal how effective strategies in each type of work affect the sense of uncertainty throughout the trajectory. Parry (2003) studied survivors of childhood cancer and revealed that although uncertain states may be a problematic stressor for some, a more universal theme of embracing uncertainty toward transformational growth was evident in these survivors.

Penrod (2007) helped to clarify the concept of uncertainty with a phenomenological investigation that advanced the concept of uncertainty and identified different types of uncertainty. The experience of living with uncertainty was dynamic in nature with changes in the types and modes of uncertainty, and various types of uncertainty were guided by the primary tenets of confidence and a sense of control.

These insights demonstrate an evolving body of research related to uncertainty, control, and the illness trajectory. Rather than assume that uncertainty is a negative aspect of life, researchers must remain open to positive transformational outcomes of living through uncertainty. Wiener and Dodd’s original recommendation remains salient, to expand the scope of the illness trajectory framework (Wiener & Dodd, 1993). The illness trajectory theoretical framework is especially useful for understanding the variations in uncertainty and control and for gaining a fuller perspective of the human experience with cancer and other conditions where the significance of uncertainty and control may vary.