Engaging in reviews 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. 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). 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. Rather, the trajectory of illness organizes insights to better understand the dynamic interplay of the disruption of illness within the changing contexts of life. Comparing self with persons who are in worse condition to reassure self that it is not as bad as it could be This disruption or sense of disequilibrium is marked by a sense of a loss of control, resulting in states of uncertainty. The self of the past is viewed differently (e.g., the way it used to be). 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. 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. Marylin J. Dodd 1946-present Photo credit: Craig Carlson. Using terminology related to illness and treatment She has produced a steady stream of research and theory articles since the mid-1970s. Instead of fishing and agriculture, many Micronesians have come to rely on the canned meat, shortening, and salty, canned fish that is readily available as a result of Micronesia’s past “trust” relationship with the US. The self of the past is viewed differently (e.g., the way it used to be). Merle H. Mishel was born in Boston, Massachusetts. Interactions with others are a major influence on the establishment of the conception of self. Marylin J. Dodd was born in 1946 in Vancouver, Canada. 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. Theory of Illness Trajectory Many Hispanic, African American, and Arab groups also embrace the hot/cold theory of health and illness. This disruption permeates the interdependent elements of biography: identity, temporality, and body. In her early efforts, Wiener focused on illness trajectories, biographies, and the evolving medical technology scene. Uncertainty Abatement Work Everyday-life work: activities of daily living, keeping a household, maintaining an occupation, sustaining relationships, and recreation, 3. Hope is sustained despite changing circumstances. The key concepts include self-care maintenance, self-care monitoring, and self-care management. Setting goals 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. Biographical work: the exchange of information, emotional expressions, and the division of tasks through interactions within the total organization Wiener’s expertise in grounded theory methods permitted the adaptation of grounded theory methods for application to secondary data that proved successful. 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. 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. Healing traditions addressed all three and healing occurred in a very holistic way.  Frequency: how often the experience of time is distorted (i.e., stretched out, constrained, or limitless) Wiener is an adjunct professor and research sociologist in the Department of Social and Behavioral Sciences at the School of Nursing 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. She has skillfully woven modest internal and external funding with 23 years of continuous National Institutes of Health funding to advance her research. The conception of the former body (the way it used to be) comingles with the altered state of the body at present and the changed expectations for how the body may perform in the future. Living is fraught with uncertainty, yet illness (especially chronic illness) compounds this uncertainty in profound ways. Currently, the prevalence of obesity in Native Hawaiians is 69.3% (Anderson et al., 2006). Interviews were structured around family coping and were conducted at three points during chemotherapeutic treatment.  Pace: how fast In 2002, she instituted two new courses (“Biomarkers I and II”) developed by the Center for Symptom Management Faculty Group. UNCERTAIN IDENTITY THEORETICAL SOURCES. Thus, tolerating uncertainty is a critical theoretical strand in the illness trajectory theory. 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. 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. An old adage tells us that nothing in life is certain, except death and taxes. However, in this project, the data were collected previously using a structured interview guide; this was a secondary analysis of an established data set. Despite the breadth and volume of these activities, Dodd is an active teacher and mentor. 3. For example, in Palau, illness could occur from “ancestral-wrongness to the spirit” (Wong et al., 2004). By listening to those who are tolerating this exaggerated uncertainty, we can learn much about the trajectory of living.” (Wiener & Dodd, 1993, p.29). Anticipation of the future self is altered. A temporal disjunction in the biography Among these honors, she was recognized as a fellow of the American Academy of Nursing (1986). But the sheer size of the data set does not tell the whole story. Subjects in the study designated at least one family member who was willing to participate in the study. Dodd’s record in research dissemination is equally illustrious. Hope is sustained despite changing circumstances. “ The Spoon Theory ”, a personal story by Christine Miserandino, is popular among many people dealing with chronic illness. Among these honors, she was recognized as a fellow of the American Academy of Nursing (1986). This is a very large data set for a qualitative inquiry. 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. Becoming “professional” patients As varied role behaviors are enacted, the person monitors reactions of others and a sense of self in an integrated process of establishing meaning. 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). 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. 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. Her exemplary program of research is focused in oncology nursing, specifically, self-care and symptom management. The experience of illness always is placed within the biographical context, that is, illness is experienced in the continual flow of the life. She then accepted the position of assistant professor at UCSF. As an example of how westernization has affected the lifestyle of many Native Hawaiians, consider how the traditional diet, which was low in fat and high in complex carbohydrates, has changed to a typically western diet, high in fat and low in complex carbohydrates (Blaisdell, 1993, 1996). 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. 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. Am J Public Health. Each patient had been diagnosed with cancer (including breast, lung, colorectal, gynecological, or lymphoma) and was in the process of receiving. Wiener received her master’s degree in sociology from the University of California, San Francisco (UCSF) in 1975. 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). Illness representations are central to Leventhal's Self-Regulation Theory (Leventhal, 1970; Leventhal, Meyer, & Nerenz, 1980). Covering up All of this work is grounded in her strong methodological expertise and sociological perspective. Interpretation of self is distorted as the body fails to perform in usual ways, and expectations related to the flow of events (temporality) are altered by disease and treatment. The reconceptualized uncertainty in illness theory “addresses the process that occurs when a person lives with unremitting uncertainty found in chronic illness or in illness with a potential for recurrence . Sociological Theories of Health and Illness Functionalist View of Health and Illness Functionalism considers how health and illness impact social order, as well as the roles of patients and health care providers. After receiving a Ph.D., Wiener accepted the position of assistant research sociologist at UCSF. Type of Activity 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). In addition, she has authored or coauthored several books (Strauss, Fagerhaugh, Suczek, & Wiener, 1997; Wiener, 1981, 2000; Wiener & Strauss, 1997; Wiener & Wysmans, 1990). Dodd’s record in research dissemination is equally illustrious. 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. Body failure and difficulty reading the new body upset the former conception of self. She has skillfully woven modest internal and external funding with 23 years of continuous National Institutes of Health funding to advance her research. Behavioral Manifestations Domain Living is fraught with uncertainty, yet illness (especially chronic illness) compounds this uncertainty in profound ways. Janice Penrod, Lisa Kitko and Chin-Fang Liu The ill person (or patient) is the central worker; however, all work takes place within and is influenced by the total organization. By the early 1980s, she was publishing multiple, focused articles each year, and that pace has only accelerated. 22. The audiotaping and verbatim transcription of these dialogues contributed to the variation and appropriateness of the resultant data set. 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. Choosing a supportive network Her many presentations at scientific gatherings around the world accentuate this work. 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). The activities of life and of living with an illness are forms of work. Her volume of original publications began in 1975. The desired outcome . Throughout her career, Wiener’s excellence has earned for her several meritorious awards and honors. 1991;81:1498–505. A major contribution of this work was the delineation of types of uncertainty abatement work (Table 30-2). 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. In her early efforts, Wiener focused on illness trajectories, biographies, and the evolving medical technology scene. 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. 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. MAJOR CONCEPTS & DEFINITIONS 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). Traditionally, illness was thought to be the result of an imbalance in the three anchors of the lokahi triangle (physical, mental/emotional and spiritual). The sample for the larger study included 100 patients and their families. Today’s medicine is failing us with temporary fixes to complex long-term problems—from numerous … The analytical inquiry proceeded inductively to reveal the core socialpsychological process around which the theory is explicated: tolerating the uncertainty of living with cancer. Columbia, Canada. She returned to UCSF to pursue her doctorate in sociology and completed her Ph.D. in 1978. In this model, the human is unitary. She is highly sought as a methodological consultant to researchers and students from a variety of specialties. 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. Dodd’s illustrious career has merited several prestigious awards. Skewed temporality impairs the expected life course. Such disruption affects all aspects of life, including physiological functioning, social interactions, and conceptions of self. She teaches qualitative research methods and has conducted numerous seminars and workshops on the grounded theory method. [ 2] F Bucking up to avoid stigma or to protect others Theories and models are used in program planning to understand and explain health behavior and to guide the identification, development, and implementation of interventions. Balancing expertise with super-medicalization 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. When identifying a theory or model to guide health promotion or disease prevention programs, it is important … The self-regulation framework is conceptualized as a parallel processing framework. chemotherapy for initial disease treatment or for recurrence. 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. Carolyn L. Wiener was born in 1930 in San Francisco. Medical sociologists study the physical, mental, and social components of health and illness. Uncertainty in Illness Theory CREDENTIALS AND BACKGROUND OF THE THEORIST. Carolyn L. Wiener was born in 1930 in San Francisco. Personalistic Causes. She is highly sought as a methodological consultant to researchers and students from a variety of specialties. Lydia E. Hall. . 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 includes the loss of social structures, lands and ways of life, as well as the effects of racism and discrimination. 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. Evidence gleaned from reading the body is not interpretable within the usual frame of understanding. 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). 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. occurred in varied combinations and configurations across the trajectory of illness for different players in the organization.  Disease recurrence USE OF EMPIRICAL EVIDENCE Studies in Hawaii and other islands have suggested that a return to traditional diets could help lower serum cholesterol, blood sugar levels and other obesity related conditions. In essence, the principles under-girding analysis (i.e., the coding paradigm) were applied to the preexisting data set. 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. Parsons did not disagree with the dominance of the medical model of health in determining illness, yet These activities were enacted to lessen the impact of the varied states of uncertainty induced by undergoing cancer chemotherapy. 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. These strategies were highly dynamic and responsive and, 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. In addition, she has authored or coauthored several books (Strauss, Fagerhaugh, Suczek, & Wiener, 1997; Wiener, 1981, 2000; Wiener & Strauss, 1997; Wiener & Wysmans, 1990). There are several theories and models that support the practice of health promotion and disease prevention. Her research focuses on organization in healthcare institutions, chronic illness, and health policy. But the sheer size of the data set does not tell the whole story. Recall, however, that the biographical context is rooted in the body. 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. 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. She earned her bachelor’s degree in interdisciplinary social science from San Francisco State University in 1972. 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. Types of work are organized around the following four lines of trajectory work performed by patients and families: It is an examination of how an individual protects their personal identify if they depart from an approved standard of conduct, behavior, or appearance. Healing traditions addressed all three and healing occurred in a very holistic way. Masking signs of illness or related emotions 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. Interactions with others are a major influence on the establishment of the conception of self. The sample for the larger study included 100 patients and their families. 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. Personalistic causes are associated with social punishment or retribution … 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. The first major theory within sociology that analysed the role of health and illness in social life was devised by the functionalist theorist Talcott Parsons (1951) in his book The Social System. From the late 1980s to 1990s, Wiener focused on coping, uncertainty, and accountability in hospitals. In addition, she has authored or coauthored several books (Strauss, Fagerhaugh, Suczek, & Wiener, 1997; Marylin J. Dodd was born in 1946 in Vancouver, Canada. Illness Trajectory: States of Uncertainty Coping is the response to such disruption. The methodological credibility of this researcher supports her extension of a traditional research method into a new application within her disciplinary perspective (sociology). Her volume of original publications began in 1975. This article describes a middle-range theory of self-care that addresses the process of maintaining health with health promoting practices within the context of the management required of a chronic illness. The theory has not addressed the experience of living with continual, constant uncertainty in either a chronic illness or in an illness with a treatable acute phase and possible eventual recurrence. 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