Theory of Illness Trajectory

Theory of Illness Trajectory

Janice Penrod, Lisa Kitko and Chin-Fang Liu


Carolyn L. Wiener

Carolyn L. Wiener was born in 1930 in San Francisco. She earned her bachelor’s degree in interdisciplinary social science from San Francisco State University in 1972. Wiener received her master’s degree in sociology from the University of California, San Francisco (UCSF) in 1975. She returned to UCSF to pursue her doctorate in sociology and completed her Ph.D. in 1978. After receiving a Ph.D., Wiener accepted the position of assistant research sociologist at UCSF.

Wiener is an adjunct professor and research sociologist in the Department of Social and Behavioral Sciences at the School of Nursing at UCSF. Her research focuses on organization in healthcare institutions, chronic illness, and health policy. She teaches qualitative research methods and has conducted numerous seminars and workshops on the grounded theory method.

Throughout her career, Wiener’s excellence has earned for her several meritorious awards and honors. Her intense collaborative relationship with the late Anselm Strauss (co-originator of grounded theory methods) and prolific experience in grounded theory methods are evidenced by her invited presentations at the Celebration of the Life and Work of Anselm Strauss at UCSF in 1996 and at a conference entitled Anselm Strauss, a Theoretician: The Impact of His Thinking on German and European Social Sciences in Magdeburg, Germany, in 1999. She is highly sought as a methodological consultant to researchers and students from a variety of specialties.

Dissemination of research findings and methodological papers is a hallmark of Wiener’s work. She has produced a steady stream of research and theory articles since the mid-1970s. In addition, she has authored or coauthored several books (Strauss, Fagerhaugh, Suczek, & Wiener, 1997; Wiener, 1981, 2000; Wiener & Strauss, 1997; Wiener & Wysmans, 1990). In her early efforts, Wiener focused on illness trajectories, biographies, and the evolving medical technology scene. From the late 1980s to 1990s, Wiener focused on coping, uncertainty, and accountability in hospitals. Then she completed a study examining the quality management and redesign efforts in hospitals and the interplay between agencies and hospitals around the issue of accountability (Wiener, 2000). All of this work is grounded in her strong methodological expertise and sociological perspective.

Marylin J. Dodd

Marylin J. Dodd was born in 1946 in Vancouver, Canada. She qualified as a registered nurse after studying at the Vancouver General Hospital, British Columbia, Canada. She continued her education, earning a bachelor’s and a master’s degree in nursing from the University of Washington in 1971 and 1973, respectively. Dodd worked as an instructor in nursing at University of Washington following graduation with her master’s degree. By 1977, Dodd returned to academe and completed a Ph.D. in nursing from Wayne State University. She then accepted the position of assistant professor at UCSF. During her tenure there, Dodd has advanced to the rank of full professor, serving as the director for the Center for Symptom Management at UCSF. In 2003, she was awarded the Sharon A. Lamb Endowed Chair in Symptom Management at the School of Nursing, UCSF.

Her exemplary program of research is focused in oncology nursing, specifically, self-care and symptom management. Dodd’s outstanding record of funded research provides evidence of the superiority and significance of her work. She has skillfully woven modest internal and external funding with 23 years of continuous National Institutes of Health funding to advance her research. Her research trajectory has advanced impeccably as she progressively utilized both descriptive studies and intervention studies employing randomized clinical trial methodologies to extend an understanding of complex phenomena in cancer care.

Dodd’s research was designed to test self-care interventions (PRO-SELF Program) to manage the side effects of cancer treatment (mucositis) and symptoms of cancer (fatigue, pain). This research entitled The PRO-SELF: Pain Control Program—An Effective Approach for Cancer Pain Management was published in Oncology Nursing Forum (West, Dodd, Paul, Schumacher, Tripathy et al., 2003). Currently, she teaches in the Oncology Nursing Specialty. In 2002, she instituted two new courses (“Biomarkers I and II”) developed by the Center for Symptom Management Faculty Group.

Dodd’s illustrious career has merited several prestigious awards. Among these honors, she was recognized as a fellow of the American Academy of Nursing (1986). Her continued excellence and significant contributions to oncology nursing are evidenced by her having been awarded the Oncology Nursing Society/Schering Excellence in Research Award (1993, 1996), the Best Original Research Paper in Cancer Nursing (1994, 1996), the Oncology Nursing Society Bristol-Myers Distinguished Researcher Career Award (1997), and the Oncology Nursing Society/Chiron Excellence of Scholarship and Consistency of Contribution to the Oncology Nursing Literature Career Award (2000). In 2005, Dodd received the prestigious Episteme Laureate (the Nobel Prize in Nursing) Award from the Sigma Theta Tau International Honor Society of Nursing. This impressive partial listing of awards provides a sense of the magnitude of professional respect and admiration that Dodd has garnered throughout her career.

Dodd’s record in research dissemination is equally illustrious. Her volume of original publications began in 1975. By the early 1980s, she was publishing multiple, focused articles each year, and that pace has only accelerated. She has authored or coauthored 130+ data-based peer-reviewed journal articles, seven books and many book chapters, and numerous editorials, conference proceedings, and review papers (1978, 1987, 1988, 1991, 1997, 2001). Her many presentations at scientific gatherings around the world accentuate this work. Dodd has been an invited speaker throughout North America, Australia, Asia, and Europe.

Her active service to the university, School of Nursing, Department of Physiological Nursing, and to numerous professional and public organizations and journal review boards augments her outstanding record of service to the profession of nursing. Despite the breadth and volume of these activities, Dodd is an active teacher and mentor. She is the faculty member on record for several graduate courses and carries a significant advising load in the master’s, doctoral, and postdoctoral programs at UCSF. With this brief overview of but a few highlights in an amazing career, it is clear that Dodd is an exemplar of excellence in nursing scholarship.


Being ill creates a disruption in normal life. Such disruption affects all aspects of life, including physiological functioning, social interactions, and conceptions of self. Coping is the response to such disruption. Although coping with illness has been of interest to social scientists and nursing scholars for decades, Weiner and Dodd clearly explicate that formerly implicit theoretical assumptions have limited the utility of this body of work (Wiener & Dodd, 1993, 2000). Because the processes surrounding the disruption of illness are played out in the context of living, coping responses are inherently situated in sociological interactions with others and biographical processes of self. Coping is often described as a compendium of strategies used to manage the disruption, attempts to isolate specific responses to one event that is lived within the complexity of life context, or assigned value labels (e.g., good or bad) to the responsive behaviors that are described collectively as coping. Yet, the complex interplay of physiological disruption, interactions with others, and the construction of biographical conceptions of the self warrants a more sophisticated perspective of coping.

The Theory of Illness Trajectory* addresses these theoretical pitfalls by framing this phenomenon within a sociological perspective of a trajectory 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 significant contribution to nursing: coping is not a simple stimulus-response phenomenon that can be isolated from the complex context of life. Because life is centered in the living body, the 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.

From this perspective, coping is best viewed as change over time that is highly variable in relation to biographical and sociological influences. The trajectory is this course of change, of variability, that cannot be confined to or modeled in linear phases or stages. Rather, the trajectory of illness organizes insights to better understand the dynamic interplay of the disruption of illness within the changing contexts of life.

Within this sociological framework, Wiener and Dodd address serious concerns regarding conceptual overattribution of the role of uncertainty in the framework of 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 this uncertainty in profound ways. Being chronically ill exaggerates the uncertainties of living within being 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 trajectory of illness 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 illness trajectory theory.


Life is situated in a biographical context. Conceptions of self are rooted in the physical body and are formulated based on the perceived capability to perform usual or expected activities to accomplish the objectives of varied roles. Interactions with others are a major influence on the establishment of the conception of self. As varied role behaviors are enacted, the person monitors reactions of others and a sense of self in an integrated process of establishing meaning. Identity, temporality, and body are key elements in the biographical context, as follows:

Illness, particularly cancer, disrupts the usual or everyday conception of self and is compounded by the perceived actions and reactions of others in the sociological context of life. This disruption permeates the interdependent elements of biography: identity, temporality, and body. This disruption or sense of disequilibrium is marked by a sense of a loss of control, resulting in states of uncertainty.

As life contexts continually unfold, dimensions of uncertainty are manifest, not in a linear sequence of stages or phases, but in an unsettling intermingling of perceptions of the uncertain body, uncertain temporality, and uncertain identity. The experience of illness always is placed within the biographical context, that is, illness is experienced in the continual flow of the life. The domains of illness-related uncertainty vary in dominance across the illness trajectory (Table 30-1) through a dynamic flow of perceptions of self and interactions with others.

Table 30-1

Illness Trajectory: States of Uncertainty

Domain Sources of Uncertainty Dimensions of Uncertainty
UNCERTAIN TEMPORALITY Life is perceived to be in a constant state of flux related to illness and treatment. Loss of temporal predictability prompts concerns surrounding:

Ambiguity in reading body signs Concerns surrounding:


The activities of life and of living with an illness are forms of work. The sphere of work includes the person and all others with whom he or she interacts, including family and healthcare providers. This network of players is called the total organization. The ill person (or patient) is the central worker; however, all work takes place within and is influenced by the total organization. Types of work are organized around the following four lines of trajectory work performed by patients and families:

The balance of these types of work is dynamically responsive, fluctuating across time, situations, perceptions, and varied players in the total organization in order to gain some sense of equilibrium (i.e., a sense of control). This interplay among the types of work creates a tension that is marked by shifts in the dominance of types of work across the trajectory. Recall, however, that the biographical context is rooted in the body. As the body changes through the course of illness and treatment, the capacity to perform certain types of work and, ultimately, one’s identity are transformed.

A major contribution of this work was the delineation of types of uncertainty abatement work (Table 30-2). These activities were enacted to lessen the impact of the varied states of uncertainty induced by undergoing cancer chemotherapy. These strategies were highly dynamic and responsive and occurred in varied combinations and configurations across the trajectory of illness for different players in the organization. Those enacting these strategies affected the conception of self as they monitored others’ responses to the strategy as they attempted to manage living with illness.


The Theory of Illness Trajectory was expanded through a secondary analysis of qualitative data collected during a prospective longitudinal study that examined family coping and self-care during 6 months of chemotherapy treatment. The sample for the larger study included 100 patients and their families. Each patient had been diagnosed with cancer (including breast, lung, colorectal, gynecological, or lymphoma) and was in the process of receiving chemotherapy for initial disease treatment or for recurrence. Subjects in the study designated at least one family member who was willing to participate in the study.

Although both quantitative and qualitative measures were used in data collection for the larger study, this theory was derived through analysis of the qualitative data. Interviews were structured around family coping and were conducted at three points during chemotherapeutic treatment. The patients and the family members were asked to recall the previous month and then discuss the most important problem or challenge with which they had to deal, the degree of distress created by that problem within the family, and their satisfaction with the management of that concern.

Meticulous attention was paid to consistency in data collection: family members were consistent and present for each interview, the interview guide was structured, and the same nurse-interviewer conducted each data collection point for a given family. Audiotaping the interview proceedings, verbatim transcription, and having a nurse-recorder present at each interview to note key phrases as the interview progressed further enhanced methodological rigor. The resultant data set consisted of 300 interviews (three interviews for each of 100 patient-family units) that were obtained at varied points in the course of chemotherapeutic treatment for cancer.

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 Anselm Strauss, one of the method’s founders, was subsequently recruited to conduct a secondary analysis of interview data. It should be noted that traditional 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 the focus of subsequent data collection theoretically are driven to flesh out emergent concepts, dimensions, variations, and negative cases. However, in this project, the data were collected previously using a structured interview guide; 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 under-girding analysis (i.e., the coding paradigm) were applied to the preexisting data set. The analytical inquiry proceeded inductively to reveal the core socialpsychological 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 to reveal the internal consistency of the theoretical perspective of illness trajectory.

When considering the authors’ use of adapted grounded theory methods to analyze preexisting empirical evidence, several insights may be useful to support the integrity of this work. First, Wiener was certainly well prepared to advance new applications of the method by her 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, it is important to recall the size of this data set: 100 patients and families were interviewed 3 times each, for a total of 300 interviews. This is 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 would allow 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. Given these insights, it may be concluded that the empirical evidence culled through the interviews conducted during the larger study provided adequate and appropriate data for a secondary analysis using expertly adapted grounded theory methods.

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Feb 9, 2017 | Posted by in NURSING | Comments Off on Theory of Illness Trajectory

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