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The conceptualization of meaning in illness
Sot. Sci. Med. Vol. 38, No. 2, pp. 309-316, 1994 Printed in Great Britain. All rights reserved
0277-9536/94 66.00 + 0.00 Copyright 0 1994 Pergamon Press Ltd
THE CONCEPTUALIZATION
OF MEANING
IN ILLNESS
BETSY L. FIFE
Center
for Nursing
Research,
Indiana
University
School of Nursing,
Indianapolis,
IN 46202, U.S.A.
Abstract-The focus of this paper is the development of a conceptualization of meaning within the context of serious illness. It is based on a symbolic interactionist perspective, with the significance of the concept of meaning for the process of adaptation being a primary point of discussion. Meaning, as it is defined here, refers to the perceived nature of the relationship between the individual and his/her world that is developed within the context of specific events. It is comprised of two inextricably linked dimensions: meaning that pertains to one’s identity and how that is affected by the event of the illness, and meaning which pertains to perceived characteristics of the event and to the social circumstances that surround it. Interviews with 38 persons living with the stress of cancer provide qualitative data that illustrate the concept as it is set forth in this paper. Four specific domains relevant to symbolic interactionism were explored in these interviews: (1) the individual’s response to the illness; (2) changes that occurred relative to identify as a consequence of the illness; (3) the impact of cancer on the individual’s relationship to the social world; (4) anticipated effects of the illness on the individual’s future. Clinical implications of specific aspects of meaning are discussed. Key words-meaning,
stress, cancer,
coping,
adaptation
view data then provide the basis for a subsequent paper in which an operationalized measure of meaning to be used in research on stress and coping will be presented.
INTRODUCTION
of meaning is a central aspect of serious illness that is frequently referred to in the popular self-help literature related to personal crisis [14]; yet, it is often overlooked in the literature on stress and coping, or it is referred to only superficially. The concept of meaning commonly refers to the relationship between individuals and their world, as well as to individuals’ unique perceptions of their place within that world. It is these perceptions that give a sense of coherence to life in the face of loss, change and personal upheaval [5-71. Meaning becomes particularly significant in the realm of stress and coping with serious illness because such an extraordinary event imposes irrevocable change that totally disrupts the continuity of everyday life. Consequently, individuals are forced to re-define the meanings they have assumed, or supposed as fact in the routine of living. Although the specifics of how meaning is conceptualized vary by discipline and by the particular theoretical perspective that is taken, the variety and number of disciplines-from philosophy, to linguistics, to sociology and psychology-that are concerned with the essence of meaning attest to its significance as a central aspect of human existence. The primary purpose of this paper is to introduce a conceptualization of meaning in the context of serious illness that is based on a symbolic interactionist framework [8], and to illustrate its significance within the process of adapation. Qualitative data from interviews with 38 persons diagnosed as having cancer are presented as examples of meaning that has been constructed within the reality of this serious illness. This conceptualization, as well as the inter-
The
construction
adaptation
to
THE CONCEPT OF MEANING
Within the theoretical framework of symbolic interactionism, meaning refers to the nature of the perceived relationship between the individual and his/her world that is developed within the context of specific events. Meaning exists within the field of one’s experience, it is understood in terms of one’s responses to these experiences, and it is expressed by symbols that constitute language [9]. In other words, the symbolic interactionist perspective of meaning is predicated on individuals’ specljic cognitive responses to particular events. Subsequently, behavior is based on these meanings, which emerge from within the context of social life and are modified and dealt with through an interpretive process that occurs as persons respond to the circumstances that are a part of their daily lives [8]. As Mead [9] suggests, meaning is not an abstract idea as traditionally conceived, but a concrete aspect of life that both influences and is influenced by behavior. Consistent with the symbolic interactionist perspective, Marris [7j defines “structures of meaning” as cumulative phenomena that are learned within the context of specific social relationships and circumstances. He argues that meaning is integrally linked to identity, and that it is the basis of continuity between past and present; it provides a frame of reference within which the consequences of events can be interpreted (IO]. Steeve’s [l I] study of men under309
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BETSY L. FIFE
going bone marrow transplantation provides an example of this conceptualization. He found that individuals sought meaning as a way of understanding this experience and situating it within their life schemas. This subsequently provided a basis for their adaptation to incredibly painful circumstances. In the literature relevant to stress and coping, a conceptualization of meaning close to the symbolic interactionist perspective is suggested by Lipowski [12]. He proposes that the meaning persons assign to a particular event influences the coping strategies utilized to deal with the stress they encounter. Development of these meanings is significantly affected by the cultural context in which persons live, as well as by their past experiences, knowledge and belief systems Based on this conceptualization he defines distinct categories of meaning such as challenge, punishment or loss that persons in Western culture commonly assign to the event of serious illness, and which then influence behavior. Thompson and Janigian [I 31 differentiate meaning from the search for meaning. They propose that “implicit meaning” is equivalent to appraisal, as it is defined by Lazarus and Folkman [14], while “found meaning” includes an understanding of how an event fits into the individual’s life schema. Furthermore, they argue that the criterion for “found meaning” is that the world view and the self view come to be perceived as compatible; in this sense “found meaning” is always positive. The search for meaning then becomes a part of the coping process, while “found meaning” becomes an aspect of coping outcome. Other researchers writing in the stress and coping literature frequently define meaning from a more philosophical perspective as .finding n pnsirit:e purpose for a negative event. As described by O’Connor [I 51 and Lewis [16], meaning is sought as an object of cognitive struggle that is directed toward providing a sense of purpose for the crisis situation, which enables the individual to place the event within the context of other aspects of his/her life. Mechanic [I71 suggests that the discovery of meaning is partially an outcome of an attributional search for the cause of the event, while Lewis [I61 describes the derivation of meaning as a method of obtaining cognitive control. Taylor [I81 argues that adjustment to highly threatening situations is partially determined by the individual’s ability to find meaning in negative circumstances, while Barkwell [I91 found that positive meaning ascribed to the pain of cancer, such as viewing it as a challenge, was associated with lower levels of depression. Associated with this philosophical conceptualization of meaning is the idea of self-transcendence, as discussed by Reed [20]. She defines this as a developmental phenomenon that involves extending one’s persona1 boundaries to broaden life perspec-
tives and purposes. which, in turn, strengthens one’s sense of identity with the greater environment. This extension of the self results in a new sense of meaning or purpose. All of these authors have theorized and/or empirically demonstrated that the individual’s ability to find a sense of purpose [ 15-17,211 and/or to transcend one’s self [20, 221 contributes to adaptive coping with threatening events, as well as to positive adjustment, including mental health and emotional wellbeing. While the way meaning is defined in this paper is not antithetical to the philosophical conceptualization of meaning as assigning a purpose to the event, it is formulated within the framework of symbolic interactionism that places meaning clearly within the context of behavior. This particular perspective makes it possible to situate meaning unequivocally within the process of adaptation, where its relationship to other variables significant in this process can be readily examined. Here, meaning is specifically defined as an individual’s perception of the potential significance of an event, such as the occurrence of serious illness. for the self and one’s plan of action. Meaning may be found anywhere along a continuum that goes from positive to negative. It includes the individual’s perceptions of his/her state of being given the event (the illness). which are arrived at partially as a result of the appraisal process. However. it is important to point out that meaning, as it is defined here, is not equivalent to appraisal as defined by Lazarus and Folkman [l4]. Appraisal, as they define it. involves a process by which individuals evaluate both the relevance of a specific event, as well as available coping resources. While the latter process may contribute to the formulation of meaning in important ways. the construct of meaning as it is conceptualized in this paper has two fundamental and inextricably linked dimensions, which may not always be clearly differentiated: self’ meaning and conte.utual meaning. Self meaning pertains to the perceived effect of the event on various aspects of one’s identity, while contextual meaning pertains to perceived characteristics of the event itself, as well as to the social circumstances that surround it. In other words, meaning involves one’s perception of the self within the context of the social world, given the illness with which s/he is forced to live. Meaning encompasses the individual’s perception of the ability s/he has to accomplish future goals, to maintain the viability of interpersonal relationships, and to sustain a sense of personal vitality, competence and power. As Marris [7], Thompson and Janigian [l3], and Henslin [23] argue, individuals need a sense of consonance between their self-definitions and the events that occur in their lives. and that is provided by meaning. The schema given in Fig. I illustrates this conceptualization of the construction of meaning.
The conceptualization
311
of meaning in illness
The occurrence of critical events requires that we reconstruct and transform the meaning upon which we base our lives. Furthermore, revising principles by which we have interpreted the past is a far more formidable task than conforming present events to existing principles [7]. Therefore, the meanings which are formulated are likely to change in crisis situations, sometimes very rapidly, as the individual engages in the coping process and actively struggles to arrive at a meaning that is not devastating to his/her self-perception. Within the context of a highly threatening event, such as serious illness, the process of defining meaning involves efforts to understand and put in perspective the occurrence of the event, and to comprehend its significance for one’s self and one’s future life. Several factors would be expected to affect this evolving formulation of meaning: (1) the extent to which a person perceives s/he is able to control the situation; (2) the objective ways in which an event is affecting the individual’s current ability to function; and (3) any changes related to the event in how the individual is percieved by others. If the individual determines that the situation is not amenable to change, the struggle is to put the event in a perspective that does not denigrate the self, that is not overwhelming, and that makes the situation seem manageable. According to Frank1 [6], it is meaning that enables the individual to regain an “inner hold on life.” Following a description of the sample and the methods by which interview data were obtained, examples will be presented to further explicate the two fundamental dimensions of meaning as it is set forth here: meaning with respect to the self and meaning that is indicated by individuals’ perceptions of the social world and future possibilities. These interviews were carried out as part of a larger study that also included obtaining quantitative data by questionnaire from groups of individuals at different points in the cancer trajectory.
PROCEDURE
FOR OBTAINING AND CATEGORIZING THE DATA
Participants Thirty-eight persons diagnosed as having one of a variety of types of cancer at various stages of the illness trajectory were interviewed. All subjects were Caucasian; they were predominantly blue-collar and white-collar workers, and Protestant or Catholic. The majority of participants had at least a high school education, they ranged from 31 to 74 years of age with a mean age of 54 years, and there were 16 men and 22 women. Participants were recruited for these interviews from the oncology and radiation therapy clinics of a community-based cancer center in a large midwestern city. The primary study, of which these interviews were a part, received IRB approval from this institution. The majority of interviews took place in the research offices, while a few took place in participants’ homes. All interviews were audio-taped with participants’ written permission, and they were then transcribed verbatim. No personal identification was associated with the transcriptions. A schedule of open-ended questions framed by symbolic interactionist theory and inquiring about the individual’s personal experiences with cancer provided the basis for the interviews. Dimensions of symbolic interactionism relative to the meaning of the illness as it pertains to the self and the social context were included in these interviews. These dimensions, along with specific questions that were asked, are summarized in Table 1. Categorization
of the data
An open coding procedure was used to categorize the data from these interviews, and the following specific categories pertaining to the meaning serious illness holds for individuals provided the basis for this procedure: (1) self meaning, or implications of the illness for personal identity; (2) contextual meaning, or implications of the illness for one’s life, expectations regarding
L
Perceptlons of Future in Term.9 of Self and Social World
, Fig. I. The process
of constructing
meaning
in response
to life-threatening
illness.
312
BETSY L. FIFE
Table
1.
II.
III.
IV.
I, Summary
of the mterview content relative to life threatening illness
Impact of the illness on the indwidual’s relationship to his/her social world
I.
2.
The impact of cancer on self-perception identity The potential impact of cancer on future plans
I.
The indwidual’s to the illness
I.
response
I.
How has cancer affected your relationships with family and friends? How has cancer affected your job situation and the ways other employees mteract with you? How has vow illness affected the way you think about yourself? How do you see your diagnosis affecting how you live in the future? How do you see your illness affecting your ability to attain future goals? What have been the most difficult aspects of havmg Ct3KtX?
Have there been any positive things for you about the illness experience?
the future, and social relationships. The symbolic interactionist perspective of meaning, as it is defined in this paper, provided the foundation for these categories, while the specific dimensions of each category were drawn from the data itself. The author first examined the content of each interview and entered the data that fit within each of these two primary categories onto the appropriate coding sheet. The data were then further reduced as sub-categories relative to each of these dimensions emerged from the content of the interviews [24]. Two research assistants also categorized the data utilizing this same process, When the results from these independent analyses were compared they were highly similar, and there was no critical divergence in categorization. Data from these categories were then utilized to explain and provide examples of the role of self meaning and contextual meaning in the process of adaptation.
EXAMPLES
OF THE CENTRALITY OF MEANING ADAPTATION TO ILLNESS
IN
Self meaning The potential for change in one’s personhood as a result of the onset of a serious illness is great. The meaning ascribed to the illness as it pertains to the self is related to what individuals perceive has been gained or lost relative to their identity in relationship to the world of objects, events, and relationships [25]. Life-threatening illness has the potential of altering the roles individuals assume, threatening the dreams of who individuals perceive themselves as being and becoming, changing body image, and, as Taylor [18, 211 states, diminishing the illusion of autonomy
and personal control that is so important in our Western culture. In these interviews, three specific changes in self meaning that are related to serious illness and its treatment emerged: loss of personal control. threats to self-esteem or self-worth, and changes in body image. The first of these, loss of personul control, is an important dimension of the changes in meaning that occur relative to the self with the onset of a lifethreatening illness, which occurs when individuals become dependent upon medical experts for maintaining their very lives, and upon family members and friends for helping them through the tasks of everyday living. A significant aspect of coping involves attempting to regain a feeling of mastery over one’s life. For example, coping strategies often involve the use of denial and/or positive refocusing to minimize the significance of the illness. to defend the validity of what one has believed to be the reality of the world, and to enhance one’s ability to make sense of things. Moreover, attempts are usually made to prevent recurrence by seeking medical treatment and making behavioral changes such as modifications in diet and exercise. The loss of a sense of control and concurrent loss of personal power and vitality are illustrated by the comment of a highly successful businessman who stated, “You just have to put your life in their hands and trust them to do their best for you.” Likewise, a woman undergoing surgery for ovarian cancer related, “I remember lifting myself to the surgery table totally naked. but at that point you are just naked to everything. You just give yourself up to God and the surgeons. ” These statements point out in a profound way the vulnerability that comes from extreme levels of uncertainty and the sense that one has lost control. They convey the meaning that ownership of one’s own being has been at least temporarily lost, that one has become the property of caretakers. The significance of these extreme feelings of vulnerability may not be perceived by physicians and nurses as they go about the business of providing care; yet, there are a number of interventions that could ease the threat if caretakers were fully aware of their presence. Simply acknowledging the reality of this sense of vulnerability would be a beginning. Loss of the illusion that life is predictable, which can never be fully retrieved following the diagnosis of a life-threatening illness, is an important dimension of the loss of personal control, and it is illustrated by the following comments. “I keep saying why doesn’t it go away, why can’t I pop right back, why can’t I feel alive again?” “The hardest thing has been the fact that I might die-not knowing what to expect-I’m scared.” “ The most difficult thing about having cancer is nener knowing when it’s over with. There’s no way to close the book.” As Taylor and Brown [26] point out, the illusion of control and predictability is the basis of hope and optimism, and it enables persons to ward off depression and despair; therefore,
The conceptualization of meaning in illness learning to live without this illusion changes the meaning of life and diminishes one’s own sense of power. Likewise, Marris [7] asserts that a negative event of this significance results in a loss of continuity and disrupts the familiar pattern of one’s life and expectations. Second, serious illness poses a significant threat to self-esteem or self-worth, for it frequently threatens the roles one assumes, and it can reduce the individual’s social status and threaten interpersonal relationships. This sense of a diminished self-worth is brought to life in the following comments. “I feel like, you know, like I’m not much good to anybody anymore. I’m still maintaining a couple of my projects, but it isn’t hardly enough to make life worthwhile-what am I gonna do, just sit down and be a bum?” “ If I get to feeling tired, I stay away from people. I won’t become obvious to anybody-they are not going to see that it has got me down.” “I’m not the person that I was, and that hurts me quite a bit.” This perceived threat to identity, esteem and social status is further illustrated by the following comment of a woman who had undergone a mastectomy: “Cancer is not a scarlet letter, but you are marked in some ways, and losing a piece of yourself marks you even more because in the eyes of the world there is something wrong with you.” Similarly, another woman with breast cancer made the comment, “The loss of being able to dream for the future is the most significant effect of cancer. This makes me feel like I’m left out and on a separate track from others.” Threats to self-worth also arise in the vocational setting, which are illustrated by the experience of one woman who related that her boss no longer sought her opinions after she was diagnosed as having cancer, but instead began going to one of her colleagues. Likewise, a male in an administrative role stated that his co-workers become very solicitous and interacted with him as though he were less competent than prior to his illness. These poignant remarks illustrate the idea that the meaning of illness involves one’s perception of one’s self within a social context. When illness changes the perception of one’s relationship to others, it also alters identity, and may in turn result in a loss of feelings of social and personal worth and esteem. Importantly, these changes may result in feelings of isolation, a loss of social status, and a loss of the sense of being a fully integrated member of the social world, both in one’s own eyes and in the eyes of others. On the other hand, the assumption that changes in self-esteem are always negative is inaccurate, for the cancer experience can have positive meanings for the self as well. “Actually, I think it’s been positive in the way I view myself when I compare how I’m doing with a friend who just went through it-1 think I’m doing alrightam more positive than negative.” “I feel that maybe I’m a stronger person for having gone
313
through cancer so far. I have sort of taken charge, emotionally I think I’m stronger and I can cope with anything now.” These comments also point to the link between the meaning a crisis holds for the self and the context within which this meaning is developed, but from a positive perspective. I suggest it is likely that these differences in the meaning individuals construct may also be crucial to the process of adjustment and adaptation. Third, changes in identity may ensue as a consequence of changes in body image that occur as a result of both the illness and its treatment. The significance of these kinds of changes, and how they affect one’s identity and feelings of self-worth, is illustrated by the following comments. “I look like a geek in the mirror, especially when I had no hair-1 just feel very uneasy. ” “I feel really ugly right now, and conspicuous in crowds. I don’t feel comfortable with myself.” “When I first came home (from the hospital) I used to sit in the bathtub and when I would lean forward I would see the reflection of my scars in the faucet. It would upset me alotwould think oh, how ugly it looked.” “To J. I am still sexy, but you take the wig off and the clothes and it is not a pretty sight-I think I am terrible.” Another woman described the devastating process of losing her hair, “My friend helped me cut my hair off when it started falling out-that was a big deal, I couldn’t stand it-1 was pretty hysterical.” The mistaken notion that these physical changes are most distressing to women is contradicted by the comment of a 51-year-old male police officer being treated for lung cancer who stated, “Going to work without my hair was one of the hardest things I have ever had to do in my life. It marks you as someone with cancer,” which is also a statement about the stigma associated with this serious illness. These statements pertaining to the self all illustrate the close association that exists between social roles, integration within the social world and self meaning. When illness affects one of these dimensions of meaning it also affects the others, because within a symbolic interactionist framework the definition of self is determined largely by how persons define themselves within a social world relative to their relationships to others. When individuals are confronted with situations that are out of their personal control, such as receiving a diagnosis of a life-threatening illness like cancer, the challenge is to maintain a perspective of the meaning of the situation that makes it seem manageable and does not denigrate the self. Therefore, coping efforts frequently focus on ways to cognitively define meaning so that ultimately individuals are able to regain a sense of control. Many times these efforts appear to be at least temporarily successful, as illustrated by the following comments. “I consider myself cured. Either you’ve got this gloom/doom cancer thing hanging over you, or you feel you are free of it.” “I’m not going to let this stuff come back. I am not in denial, I just have to go on with my life. I have
things to do, I can’t die. ” “The receptionist said to me, you can laugh at all that you’ve been through? I said hey, that happened yesterday, this is today, and I’m going to tomorrow!” And an individual with metastatic disease stated, “I look at it this way, God may be looking after me so we can battle the disease successfully, so I can live for a much longer time. We all die of something, but it won’t be cancer for me!” Perhaps these individuals are at least partially recovering the loss of the illusion of predictability and personal control through their coping efforts. Contextual
meaning
The meaning of events lies in their consequences for our lives, as well as in their relevance for self-perception; in turn, plans and expectations are based on the meaning one has constructed about life [7]. Serious illness frequently threatens assumptions one makes about life and one’s place in the world: therefore, a significant task in coping with illness is to continue reaching toward goals that were established prior to the crisis, or at the very least m-defining the event and its meaning so it fits realistically within the context of one’s life given changes imposed by the illness. Preservation of continuity between the past. the present. and the future is essential for successful adaptation. As Wortman and Silver [27] write, individuals who can incorporate negative events within their “world view”, or essentially within their pcrception of the meaning the world holds for them. should experience far less distress than those whose “world views” are shattered by the event. Changes in meaning that occur with respect to this aspect of coping are demonstrated by these comments. “Suddenly my life has been turned upside down by this word (cancer) that has no meaning to me. The world got crazy all of a sudden.” A 33-yearold woman, the mother of two children, stated. “I think everyone has a life plan and this experience has said to me you really shouldn‘t have one---having cancer changes your dreams.” Another woman with young children expressed the fear felt by most parents in this situation, “I worry about my kids. I mean, what if something happened to me? What would happen to them?” “The emotional side is very difficult. All of a sudden you wonder how long you will live? What are my chances? Two years. five years, ten years?” The meaning of the threat that serious illness poses to the attainment of future goals, and the significance of meaning for predicting the course of events was pointed out by several of the individuals who were interviewed for the study. Moreover, it is important to note that these comments support the potential influence of the construction of meaning on behavior and future actions. An individual recently diagnosed as having cancer stated, “I hope cancer doesn’t affect my future at all. I am planning on this being it. I’m planning on the five years being just an irritation.” “One day I can remember I tap danced right down
the hall after my first treatment. I just felt the love-this cancer is not delaying any part of my life.” Meaning is frequently perceived in terms of specific aspects of one’s life and future, and several individuals talked about the possible impact of the illness on their career, and indicated this meaning may affect future behavior. “I am afraid that having cancer, especially for the second time. may prevent me from doing some of the things in my career that I really want to do. I am trying to decide what choices to make.” “It has been difficult thinking that I was going to do a career change and I was going to start the second half of my life over again, and now I am finding out that I may not have that chance. Priorities have changed-I don’t know if I will be alive later.” Conversely, the impact of changes in the meaning the future holds on behavior may be positive, as indicated by the statement of a 3 I -year-old male with testicular cancer: “I feel like 1 should be doing something else for myself and for society, maybe realizing life can be shortened. I might go back to school-do something more challenging. It’s like there is this sense of urgency. which I like. I feel like a catalyst is going along to make me do things more. It is good.” This comment links what is happening within himself as a result of the illness experience to priorities for the future, and support the symbolic interactionist perspective that these two aspects of meaning are closely associated with one another and that meaning may influence behavior. It is often assumed that the meaning of life-threatcning illness, as it pertains to one’s self and to the future, may not be as difficult for elderly individuals; however, a 7l-year-old woman related, “1 didn’t plan my life like this. I had other plans-so many things I was going to do. In the beginning this made me angry, but I couldn’t let anger destroy the only time I have left. I have to pray every day that the chemo will help me and prolong my life to give me extra time to do what I really want to do.” Serious illness may also have significant effects on personal relationships, both positive and negative. with changes occurring within and outside of the family. Within the family context, each family member is forced to face the meaning of the change that is brought about by the onset of life-threatening illness in a single member. This point is clearly illustrated by a woman diagnosed as having breast cancer. who stated, “It is really extremely hard on your marriage. At first my husband just absolutely refused to believe it was life-threatening and that denial put a wall between us. You go through mns of different changes, but our relationship is much closer now, whereas 4 to 5 months ago I didn’t know if we’d make it-it was scary.” Another woman described the impact on her marriage this way, “I think our relationship is different-it is stronger and has brought us a little closer together.” In regard to family relationships in general the statement was made, “This has made me really figure out how much
The conceptualization people love and care about me. Sometimes I used to really not understand that.” Extended family relationships may be affected by the threat as well, and the following sequence is indicative of how the meaning others construct about the disease affects their behavior toward the individual who is ill. A man diagnosed as having lung cancer stated, “I have one sister, and she disowned me when my mother died and we had not talked since then. My wife asked me if it would be alright to call her. She wrote back with a card and called a few days later. She said, we’ve had our differences, but I just want you to know you are my brother and I still love you. Oh, that made a big difference.” It is important to note that this individual’s wife would probably not have contacted his sister if the meaning she constructed did not include the perception that the illness was life-threatening. Moreover, the sister’s response can also be assumed to be based on similar meaning. The meaning of changes in relationships outside the family are also both negative and positive; for example, the comment “I think friends look at me in a different light, like poor me-you know, they probably feel sorry for me,” represents a negative perspective. On the other hand, a number of individuals talked about positive experiences with respect to others; for example, “I think I have developed more friendships from this. I found out people cared more than I thought, it has been an overwhelming experience for me that people have come to me to help me with this.” “It (cancer) has made me closer to people.” In summary, the irreversible nature of changes that occur in the face of serious illness with respect to meaning, whether they be positive or negative changes, are pointed out in the following comments; “Don’t worry about it not being like it used to be because used to be is gone”; “So as I say, things are never exactly like-1 mean you don’t go back to where things were before all this came up”; “I realize that something has happened to me that will always be with me”. These statements provide evidence that the meaning which develops from earlier experiences in the crisis provides a foundation upon which future meaning is constructed.
CONCLUSlONS
Three important points made in the theoretical discussion regarding the concept of meaning from a symbolic interactionist perspective were illustrated by examples from the data. First, there is the major point in this paper that the conceptualization of meaning is comprised of two inextricably linked dimensions, self-meaning and contextual meaning. As examples have demonstrated, the individual’s specific perception of the self as a person who has to live with cancer influences his/her ongoing evaluation of the social environment and the roles s/he assumes
of meaning in illness
315
within that environment. Conversely, responses of the social world to the individual who now has a new dimension added to his/her identity-that of being a “cancer patient”-frequently have a significant impact on the individual’s feelings of self-worth, competence and personal power. A second point is that the construction of meaning may influence future behavior. This was clearly illustrated in the determination of those individuals who were able to view the illness optimistically to continue their lives with a minimum of interruptions, while those who felt that life was running out for them either verbalized an urgent need to get as much done as possible in the time they had left, or they conveyed a sense of resignation to a changed life. Furthermore, persons who felt their identities had been stigmatized by the illness expressed feelings of discomfort and the desire to socially withdraw. Third, the argument was made that meaning is a dynamic phenomenon that changes over time as changes occur in the individual, in events, and in the contexts within which the events occur. This characteristic of meaning was emphasized by the comments indicating that cancer imposes a level of change and disruption that cannot be easily assimilated-individuals are forced to reorganize central aspects of their personal worlds and that involves changes in their perceptions of meaning, both with regard to their identity and to the social contexts in which they find themselves. The data also provide support for findings in the literature that the construction of positive meaning regarding an illness seems to be associated with an ability to continue to obtain pleasure and satisfaction from living [15-171. It was those individuals who could maintain a positive perspective of themselves and their future while living with serious illness who also appeared to minimize emotional distress and continue to find life worthwhile. In addition, based on data from these interviews there are several points which have clinical significance. First, the interviews point to a construction of meaning that is specr$c to the cancer experience and to the individual. The meaning of the illness does not appear to be closely related to such variables as gender or age, but it is constructed on the basis of what is important within the life of each person as s/he is affected by the illness experience. Therefore, if we are going to concern ourselves in the clinical setting with meaning as it relates to behavior and adaptation, careful assessment of the individual’s perceptions regarding how his/her identity and social world have been affected by the illness is important. Furthermore, the value of taking meaning into account in the effort to provide wholistic care is supported by the evidence that meaning changes and may be subject to the influence of others who have the power to shape an individual’s perceptions of his/her illness with regard to future possibilities, for example, physicians and other health care professionals.
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Second, most persons interviewed indicated in one way or another that their perceptions of themselves with regard to the future had changed irreversibly sometimes positively and in some instances negatively. Therefore, approaches to care that enhance a positive identity are important. Third, and of particular importance if the concept is to be clinically relevant, the meaning the illness holds for individuals must be readily discernible by others through the interview process. Importantly, this research indicates meaning is a concept that persons seem willing to discuss freely, and it appears to permeate all dimensions of their thinking relative to their illness. Although meaning has been considered in relationship to many types of life events, there have been few attempts to understand how this concept fits within the context of coping, and what its implications are for behavior and adaptation. Symbolic interactionism is particularly useful because, as pointed out early in the paper, it links the perception of self, the social context, cognition and behavior so that the role of meaning in persons’ responses to the disruption of life that results from the occurrence of a life threatening illness can be more clearly understood. It provides the framework for understanding the reciprocity between the individual’s internal response to the crisis of a life-threatening disease and the ways in which that response is modified by interaction with the social world. Subsequently, based on this theoretical perspective there is the possibility that the meaning persons associate with their illness and its treatment could serve as a clinical marker, and provide some indicataion of the quality of adaptation persons will be able to achieve. Acknu~~le&rmenls-I would like to thank the anonymous reviewers for their helpful comments on an earlier version of this manuscript. I would also like to thank William Corsaro, Phyllis Dexter, Kathleen KnaB and Ruth McCorkle for their insights and suggestions. This research was funded by the Walther Cancer Institute and The Indiana Regional Cancer Center, both of Indianapolis. IN.
Row, New York,
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& Row. New York, 1990. Antonovsky A. Health, Stress. and Coping. Jossey Bass. San Francisco, 1980. Frank1 V. E. Man’s Sear&for Meaning: An Introduction to Logotherapy. Beacon. Boston, 1959. Marris P. Loss and Change. Random House. New York, 1974. Stryker S. Svmbolic Inteructionism: A Social Strucrural Version. Benjamin/Cummings, Menlo Park. 1980. Mead G. H. Mind. Self, and Society. University of Chicago Press, Chicago, 1934. Marris P. Attachment and society. In The Pluce of Attuchment in Human Behacior (Edited by Parkes C. and Hind J.), p. 185. Basic Books. New York, 1982. Steeves R. Patients who have undergone bone marrow transplantation: their quest in meaning. Oncoi. ,Yurs. Forum 19, 899, 1992. Lipowski 2. Physical illness, the individual and coping processes. Ps.vchiat. Med. 1, 91, 1970. Thompson S. and Janigian A. Life schemes: a framework for understanding the search for meaning. J. Sot. C/in. Psvchol. 7, 260, 1988. Lazarus R. S. and Folkman S. Stre.v.5. Apprcrisal. and Coping. Springer. New York. 1984. O’Connor A. P., Wicker C. A. and Germino B. B. Understanding the cancer patient’s search for meaning. Cancer Nursing 13, 167. 1990. Lewis F. M. Attributions of control, experienced meaning, and psychosocial well-being, in patients with advanced cancer. J. P.yychosoc. Oncol. 7, 105. 1989. Mechanic D. Illness behavior. social adaptation. and the management of illness. J. Nerr. MentuI Di.v. 165, 79, 1977. Taylor S. E. Adjustment to threatening events: a cognitive theory of adaptation. Am. P.vychol. 38, 1161. 1983. Barkwell D. P. Ascribed meaning: a critlcal factor in coping and pain attenuation in patients with cancer related pain. J. Paiiicrt. Cure 7, 5. 1991. Reed G. Toward a nursing theory of self-transcendence: deductive reformulation using developmental theories. Adr. Nurs. Sri. 13, 64. 1991. Taylor S. E., Lichtman R. R. and Wood J. L. Attributions, beliefs about control. and adjustment to breast cancer. J. Personal. Sot,. PsJrhol. 46, 489, 19X4. Coward D. D. Self-transcendence and emotional wellbeing in women with advanced breast cancer. On&. Nurs. Forum. 18, 857. 1991. Henslin J. Guilt and guilt neutralization: response and adjustment to suicide. In Deriance rend Rrspec~tahilit~: The So&l Construction of Moral Meuning.r (EdIted by Douglas J.), p. 192. Basic Books, New York. 1970. Miles M. B. and Huberman A. M. Oualittrtiw Du/u Anul~~.si.r:.4 Sourc~c&& of Neal, Methk. Sage. Newbury Park. 1984. Cassell E. J. The nature of suffering and the goals of medicine. Nen, Engl. J. Med. 306, 639. 1982. _ Tavlor S. E. and Brown J. D. Illusion and well-being: A social psychological perspective on mental health. P.vyhol. Bull. 103, 193. 1988.
0277-9536/94 66.00 + 0.00 Copyright 0 1994 Pergamon Press Ltd
THE CONCEPTUALIZATION
OF MEANING
IN ILLNESS
BETSY L. FIFE
Center
for Nursing
Research,
Indiana
University
School of Nursing,
Indianapolis,
IN 46202, U.S.A.
Abstract-The focus of this paper is the development of a conceptualization of meaning within the context of serious illness. It is based on a symbolic interactionist perspective, with the significance of the concept of meaning for the process of adaptation being a primary point of discussion. Meaning, as it is defined here, refers to the perceived nature of the relationship between the individual and his/her world that is developed within the context of specific events. It is comprised of two inextricably linked dimensions: meaning that pertains to one’s identity and how that is affected by the event of the illness, and meaning which pertains to perceived characteristics of the event and to the social circumstances that surround it. Interviews with 38 persons living with the stress of cancer provide qualitative data that illustrate the concept as it is set forth in this paper. Four specific domains relevant to symbolic interactionism were explored in these interviews: (1) the individual’s response to the illness; (2) changes that occurred relative to identify as a consequence of the illness; (3) the impact of cancer on the individual’s relationship to the social world; (4) anticipated effects of the illness on the individual’s future. Clinical implications of specific aspects of meaning are discussed. Key words-meaning,
stress, cancer,
coping,
adaptation
view data then provide the basis for a subsequent paper in which an operationalized measure of meaning to be used in research on stress and coping will be presented.
INTRODUCTION
of meaning is a central aspect of serious illness that is frequently referred to in the popular self-help literature related to personal crisis [14]; yet, it is often overlooked in the literature on stress and coping, or it is referred to only superficially. The concept of meaning commonly refers to the relationship between individuals and their world, as well as to individuals’ unique perceptions of their place within that world. It is these perceptions that give a sense of coherence to life in the face of loss, change and personal upheaval [5-71. Meaning becomes particularly significant in the realm of stress and coping with serious illness because such an extraordinary event imposes irrevocable change that totally disrupts the continuity of everyday life. Consequently, individuals are forced to re-define the meanings they have assumed, or supposed as fact in the routine of living. Although the specifics of how meaning is conceptualized vary by discipline and by the particular theoretical perspective that is taken, the variety and number of disciplines-from philosophy, to linguistics, to sociology and psychology-that are concerned with the essence of meaning attest to its significance as a central aspect of human existence. The primary purpose of this paper is to introduce a conceptualization of meaning in the context of serious illness that is based on a symbolic interactionist framework [8], and to illustrate its significance within the process of adapation. Qualitative data from interviews with 38 persons diagnosed as having cancer are presented as examples of meaning that has been constructed within the reality of this serious illness. This conceptualization, as well as the inter-
The
construction
adaptation
to
THE CONCEPT OF MEANING
Within the theoretical framework of symbolic interactionism, meaning refers to the nature of the perceived relationship between the individual and his/her world that is developed within the context of specific events. Meaning exists within the field of one’s experience, it is understood in terms of one’s responses to these experiences, and it is expressed by symbols that constitute language [9]. In other words, the symbolic interactionist perspective of meaning is predicated on individuals’ specljic cognitive responses to particular events. Subsequently, behavior is based on these meanings, which emerge from within the context of social life and are modified and dealt with through an interpretive process that occurs as persons respond to the circumstances that are a part of their daily lives [8]. As Mead [9] suggests, meaning is not an abstract idea as traditionally conceived, but a concrete aspect of life that both influences and is influenced by behavior. Consistent with the symbolic interactionist perspective, Marris [7j defines “structures of meaning” as cumulative phenomena that are learned within the context of specific social relationships and circumstances. He argues that meaning is integrally linked to identity, and that it is the basis of continuity between past and present; it provides a frame of reference within which the consequences of events can be interpreted (IO]. Steeve’s [l I] study of men under309
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BETSY L. FIFE
going bone marrow transplantation provides an example of this conceptualization. He found that individuals sought meaning as a way of understanding this experience and situating it within their life schemas. This subsequently provided a basis for their adaptation to incredibly painful circumstances. In the literature relevant to stress and coping, a conceptualization of meaning close to the symbolic interactionist perspective is suggested by Lipowski [12]. He proposes that the meaning persons assign to a particular event influences the coping strategies utilized to deal with the stress they encounter. Development of these meanings is significantly affected by the cultural context in which persons live, as well as by their past experiences, knowledge and belief systems Based on this conceptualization he defines distinct categories of meaning such as challenge, punishment or loss that persons in Western culture commonly assign to the event of serious illness, and which then influence behavior. Thompson and Janigian [I 31 differentiate meaning from the search for meaning. They propose that “implicit meaning” is equivalent to appraisal, as it is defined by Lazarus and Folkman [14], while “found meaning” includes an understanding of how an event fits into the individual’s life schema. Furthermore, they argue that the criterion for “found meaning” is that the world view and the self view come to be perceived as compatible; in this sense “found meaning” is always positive. The search for meaning then becomes a part of the coping process, while “found meaning” becomes an aspect of coping outcome. Other researchers writing in the stress and coping literature frequently define meaning from a more philosophical perspective as .finding n pnsirit:e purpose for a negative event. As described by O’Connor [I 51 and Lewis [16], meaning is sought as an object of cognitive struggle that is directed toward providing a sense of purpose for the crisis situation, which enables the individual to place the event within the context of other aspects of his/her life. Mechanic [I71 suggests that the discovery of meaning is partially an outcome of an attributional search for the cause of the event, while Lewis [I61 describes the derivation of meaning as a method of obtaining cognitive control. Taylor [I81 argues that adjustment to highly threatening situations is partially determined by the individual’s ability to find meaning in negative circumstances, while Barkwell [I91 found that positive meaning ascribed to the pain of cancer, such as viewing it as a challenge, was associated with lower levels of depression. Associated with this philosophical conceptualization of meaning is the idea of self-transcendence, as discussed by Reed [20]. She defines this as a developmental phenomenon that involves extending one’s persona1 boundaries to broaden life perspec-
tives and purposes. which, in turn, strengthens one’s sense of identity with the greater environment. This extension of the self results in a new sense of meaning or purpose. All of these authors have theorized and/or empirically demonstrated that the individual’s ability to find a sense of purpose [ 15-17,211 and/or to transcend one’s self [20, 221 contributes to adaptive coping with threatening events, as well as to positive adjustment, including mental health and emotional wellbeing. While the way meaning is defined in this paper is not antithetical to the philosophical conceptualization of meaning as assigning a purpose to the event, it is formulated within the framework of symbolic interactionism that places meaning clearly within the context of behavior. This particular perspective makes it possible to situate meaning unequivocally within the process of adaptation, where its relationship to other variables significant in this process can be readily examined. Here, meaning is specifically defined as an individual’s perception of the potential significance of an event, such as the occurrence of serious illness. for the self and one’s plan of action. Meaning may be found anywhere along a continuum that goes from positive to negative. It includes the individual’s perceptions of his/her state of being given the event (the illness). which are arrived at partially as a result of the appraisal process. However. it is important to point out that meaning, as it is defined here, is not equivalent to appraisal as defined by Lazarus and Folkman [l4]. Appraisal, as they define it. involves a process by which individuals evaluate both the relevance of a specific event, as well as available coping resources. While the latter process may contribute to the formulation of meaning in important ways. the construct of meaning as it is conceptualized in this paper has two fundamental and inextricably linked dimensions, which may not always be clearly differentiated: self’ meaning and conte.utual meaning. Self meaning pertains to the perceived effect of the event on various aspects of one’s identity, while contextual meaning pertains to perceived characteristics of the event itself, as well as to the social circumstances that surround it. In other words, meaning involves one’s perception of the self within the context of the social world, given the illness with which s/he is forced to live. Meaning encompasses the individual’s perception of the ability s/he has to accomplish future goals, to maintain the viability of interpersonal relationships, and to sustain a sense of personal vitality, competence and power. As Marris [7], Thompson and Janigian [l3], and Henslin [23] argue, individuals need a sense of consonance between their self-definitions and the events that occur in their lives. and that is provided by meaning. The schema given in Fig. I illustrates this conceptualization of the construction of meaning.
The conceptualization
311
of meaning in illness
The occurrence of critical events requires that we reconstruct and transform the meaning upon which we base our lives. Furthermore, revising principles by which we have interpreted the past is a far more formidable task than conforming present events to existing principles [7]. Therefore, the meanings which are formulated are likely to change in crisis situations, sometimes very rapidly, as the individual engages in the coping process and actively struggles to arrive at a meaning that is not devastating to his/her self-perception. Within the context of a highly threatening event, such as serious illness, the process of defining meaning involves efforts to understand and put in perspective the occurrence of the event, and to comprehend its significance for one’s self and one’s future life. Several factors would be expected to affect this evolving formulation of meaning: (1) the extent to which a person perceives s/he is able to control the situation; (2) the objective ways in which an event is affecting the individual’s current ability to function; and (3) any changes related to the event in how the individual is percieved by others. If the individual determines that the situation is not amenable to change, the struggle is to put the event in a perspective that does not denigrate the self, that is not overwhelming, and that makes the situation seem manageable. According to Frank1 [6], it is meaning that enables the individual to regain an “inner hold on life.” Following a description of the sample and the methods by which interview data were obtained, examples will be presented to further explicate the two fundamental dimensions of meaning as it is set forth here: meaning with respect to the self and meaning that is indicated by individuals’ perceptions of the social world and future possibilities. These interviews were carried out as part of a larger study that also included obtaining quantitative data by questionnaire from groups of individuals at different points in the cancer trajectory.
PROCEDURE
FOR OBTAINING AND CATEGORIZING THE DATA
Participants Thirty-eight persons diagnosed as having one of a variety of types of cancer at various stages of the illness trajectory were interviewed. All subjects were Caucasian; they were predominantly blue-collar and white-collar workers, and Protestant or Catholic. The majority of participants had at least a high school education, they ranged from 31 to 74 years of age with a mean age of 54 years, and there were 16 men and 22 women. Participants were recruited for these interviews from the oncology and radiation therapy clinics of a community-based cancer center in a large midwestern city. The primary study, of which these interviews were a part, received IRB approval from this institution. The majority of interviews took place in the research offices, while a few took place in participants’ homes. All interviews were audio-taped with participants’ written permission, and they were then transcribed verbatim. No personal identification was associated with the transcriptions. A schedule of open-ended questions framed by symbolic interactionist theory and inquiring about the individual’s personal experiences with cancer provided the basis for the interviews. Dimensions of symbolic interactionism relative to the meaning of the illness as it pertains to the self and the social context were included in these interviews. These dimensions, along with specific questions that were asked, are summarized in Table 1. Categorization
of the data
An open coding procedure was used to categorize the data from these interviews, and the following specific categories pertaining to the meaning serious illness holds for individuals provided the basis for this procedure: (1) self meaning, or implications of the illness for personal identity; (2) contextual meaning, or implications of the illness for one’s life, expectations regarding
L
Perceptlons of Future in Term.9 of Self and Social World
, Fig. I. The process
of constructing
meaning
in response
to life-threatening
illness.
312
BETSY L. FIFE
Table
1.
II.
III.
IV.
I, Summary
of the mterview content relative to life threatening illness
Impact of the illness on the indwidual’s relationship to his/her social world
I.
2.
The impact of cancer on self-perception identity The potential impact of cancer on future plans
I.
The indwidual’s to the illness
I.
response
I.
How has cancer affected your relationships with family and friends? How has cancer affected your job situation and the ways other employees mteract with you? How has vow illness affected the way you think about yourself? How do you see your diagnosis affecting how you live in the future? How do you see your illness affecting your ability to attain future goals? What have been the most difficult aspects of havmg Ct3KtX?
Have there been any positive things for you about the illness experience?
the future, and social relationships. The symbolic interactionist perspective of meaning, as it is defined in this paper, provided the foundation for these categories, while the specific dimensions of each category were drawn from the data itself. The author first examined the content of each interview and entered the data that fit within each of these two primary categories onto the appropriate coding sheet. The data were then further reduced as sub-categories relative to each of these dimensions emerged from the content of the interviews [24]. Two research assistants also categorized the data utilizing this same process, When the results from these independent analyses were compared they were highly similar, and there was no critical divergence in categorization. Data from these categories were then utilized to explain and provide examples of the role of self meaning and contextual meaning in the process of adaptation.
EXAMPLES
OF THE CENTRALITY OF MEANING ADAPTATION TO ILLNESS
IN
Self meaning The potential for change in one’s personhood as a result of the onset of a serious illness is great. The meaning ascribed to the illness as it pertains to the self is related to what individuals perceive has been gained or lost relative to their identity in relationship to the world of objects, events, and relationships [25]. Life-threatening illness has the potential of altering the roles individuals assume, threatening the dreams of who individuals perceive themselves as being and becoming, changing body image, and, as Taylor [18, 211 states, diminishing the illusion of autonomy
and personal control that is so important in our Western culture. In these interviews, three specific changes in self meaning that are related to serious illness and its treatment emerged: loss of personal control. threats to self-esteem or self-worth, and changes in body image. The first of these, loss of personul control, is an important dimension of the changes in meaning that occur relative to the self with the onset of a lifethreatening illness, which occurs when individuals become dependent upon medical experts for maintaining their very lives, and upon family members and friends for helping them through the tasks of everyday living. A significant aspect of coping involves attempting to regain a feeling of mastery over one’s life. For example, coping strategies often involve the use of denial and/or positive refocusing to minimize the significance of the illness. to defend the validity of what one has believed to be the reality of the world, and to enhance one’s ability to make sense of things. Moreover, attempts are usually made to prevent recurrence by seeking medical treatment and making behavioral changes such as modifications in diet and exercise. The loss of a sense of control and concurrent loss of personal power and vitality are illustrated by the comment of a highly successful businessman who stated, “You just have to put your life in their hands and trust them to do their best for you.” Likewise, a woman undergoing surgery for ovarian cancer related, “I remember lifting myself to the surgery table totally naked. but at that point you are just naked to everything. You just give yourself up to God and the surgeons. ” These statements point out in a profound way the vulnerability that comes from extreme levels of uncertainty and the sense that one has lost control. They convey the meaning that ownership of one’s own being has been at least temporarily lost, that one has become the property of caretakers. The significance of these extreme feelings of vulnerability may not be perceived by physicians and nurses as they go about the business of providing care; yet, there are a number of interventions that could ease the threat if caretakers were fully aware of their presence. Simply acknowledging the reality of this sense of vulnerability would be a beginning. Loss of the illusion that life is predictable, which can never be fully retrieved following the diagnosis of a life-threatening illness, is an important dimension of the loss of personal control, and it is illustrated by the following comments. “I keep saying why doesn’t it go away, why can’t I pop right back, why can’t I feel alive again?” “The hardest thing has been the fact that I might die-not knowing what to expect-I’m scared.” “ The most difficult thing about having cancer is nener knowing when it’s over with. There’s no way to close the book.” As Taylor and Brown [26] point out, the illusion of control and predictability is the basis of hope and optimism, and it enables persons to ward off depression and despair; therefore,
The conceptualization of meaning in illness learning to live without this illusion changes the meaning of life and diminishes one’s own sense of power. Likewise, Marris [7] asserts that a negative event of this significance results in a loss of continuity and disrupts the familiar pattern of one’s life and expectations. Second, serious illness poses a significant threat to self-esteem or self-worth, for it frequently threatens the roles one assumes, and it can reduce the individual’s social status and threaten interpersonal relationships. This sense of a diminished self-worth is brought to life in the following comments. “I feel like, you know, like I’m not much good to anybody anymore. I’m still maintaining a couple of my projects, but it isn’t hardly enough to make life worthwhile-what am I gonna do, just sit down and be a bum?” “ If I get to feeling tired, I stay away from people. I won’t become obvious to anybody-they are not going to see that it has got me down.” “I’m not the person that I was, and that hurts me quite a bit.” This perceived threat to identity, esteem and social status is further illustrated by the following comment of a woman who had undergone a mastectomy: “Cancer is not a scarlet letter, but you are marked in some ways, and losing a piece of yourself marks you even more because in the eyes of the world there is something wrong with you.” Similarly, another woman with breast cancer made the comment, “The loss of being able to dream for the future is the most significant effect of cancer. This makes me feel like I’m left out and on a separate track from others.” Threats to self-worth also arise in the vocational setting, which are illustrated by the experience of one woman who related that her boss no longer sought her opinions after she was diagnosed as having cancer, but instead began going to one of her colleagues. Likewise, a male in an administrative role stated that his co-workers become very solicitous and interacted with him as though he were less competent than prior to his illness. These poignant remarks illustrate the idea that the meaning of illness involves one’s perception of one’s self within a social context. When illness changes the perception of one’s relationship to others, it also alters identity, and may in turn result in a loss of feelings of social and personal worth and esteem. Importantly, these changes may result in feelings of isolation, a loss of social status, and a loss of the sense of being a fully integrated member of the social world, both in one’s own eyes and in the eyes of others. On the other hand, the assumption that changes in self-esteem are always negative is inaccurate, for the cancer experience can have positive meanings for the self as well. “Actually, I think it’s been positive in the way I view myself when I compare how I’m doing with a friend who just went through it-1 think I’m doing alrightam more positive than negative.” “I feel that maybe I’m a stronger person for having gone
313
through cancer so far. I have sort of taken charge, emotionally I think I’m stronger and I can cope with anything now.” These comments also point to the link between the meaning a crisis holds for the self and the context within which this meaning is developed, but from a positive perspective. I suggest it is likely that these differences in the meaning individuals construct may also be crucial to the process of adjustment and adaptation. Third, changes in identity may ensue as a consequence of changes in body image that occur as a result of both the illness and its treatment. The significance of these kinds of changes, and how they affect one’s identity and feelings of self-worth, is illustrated by the following comments. “I look like a geek in the mirror, especially when I had no hair-1 just feel very uneasy. ” “I feel really ugly right now, and conspicuous in crowds. I don’t feel comfortable with myself.” “When I first came home (from the hospital) I used to sit in the bathtub and when I would lean forward I would see the reflection of my scars in the faucet. It would upset me alotwould think oh, how ugly it looked.” “To J. I am still sexy, but you take the wig off and the clothes and it is not a pretty sight-I think I am terrible.” Another woman described the devastating process of losing her hair, “My friend helped me cut my hair off when it started falling out-that was a big deal, I couldn’t stand it-1 was pretty hysterical.” The mistaken notion that these physical changes are most distressing to women is contradicted by the comment of a 51-year-old male police officer being treated for lung cancer who stated, “Going to work without my hair was one of the hardest things I have ever had to do in my life. It marks you as someone with cancer,” which is also a statement about the stigma associated with this serious illness. These statements pertaining to the self all illustrate the close association that exists between social roles, integration within the social world and self meaning. When illness affects one of these dimensions of meaning it also affects the others, because within a symbolic interactionist framework the definition of self is determined largely by how persons define themselves within a social world relative to their relationships to others. When individuals are confronted with situations that are out of their personal control, such as receiving a diagnosis of a life-threatening illness like cancer, the challenge is to maintain a perspective of the meaning of the situation that makes it seem manageable and does not denigrate the self. Therefore, coping efforts frequently focus on ways to cognitively define meaning so that ultimately individuals are able to regain a sense of control. Many times these efforts appear to be at least temporarily successful, as illustrated by the following comments. “I consider myself cured. Either you’ve got this gloom/doom cancer thing hanging over you, or you feel you are free of it.” “I’m not going to let this stuff come back. I am not in denial, I just have to go on with my life. I have
things to do, I can’t die. ” “The receptionist said to me, you can laugh at all that you’ve been through? I said hey, that happened yesterday, this is today, and I’m going to tomorrow!” And an individual with metastatic disease stated, “I look at it this way, God may be looking after me so we can battle the disease successfully, so I can live for a much longer time. We all die of something, but it won’t be cancer for me!” Perhaps these individuals are at least partially recovering the loss of the illusion of predictability and personal control through their coping efforts. Contextual
meaning
The meaning of events lies in their consequences for our lives, as well as in their relevance for self-perception; in turn, plans and expectations are based on the meaning one has constructed about life [7]. Serious illness frequently threatens assumptions one makes about life and one’s place in the world: therefore, a significant task in coping with illness is to continue reaching toward goals that were established prior to the crisis, or at the very least m-defining the event and its meaning so it fits realistically within the context of one’s life given changes imposed by the illness. Preservation of continuity between the past. the present. and the future is essential for successful adaptation. As Wortman and Silver [27] write, individuals who can incorporate negative events within their “world view”, or essentially within their pcrception of the meaning the world holds for them. should experience far less distress than those whose “world views” are shattered by the event. Changes in meaning that occur with respect to this aspect of coping are demonstrated by these comments. “Suddenly my life has been turned upside down by this word (cancer) that has no meaning to me. The world got crazy all of a sudden.” A 33-yearold woman, the mother of two children, stated. “I think everyone has a life plan and this experience has said to me you really shouldn‘t have one---having cancer changes your dreams.” Another woman with young children expressed the fear felt by most parents in this situation, “I worry about my kids. I mean, what if something happened to me? What would happen to them?” “The emotional side is very difficult. All of a sudden you wonder how long you will live? What are my chances? Two years. five years, ten years?” The meaning of the threat that serious illness poses to the attainment of future goals, and the significance of meaning for predicting the course of events was pointed out by several of the individuals who were interviewed for the study. Moreover, it is important to note that these comments support the potential influence of the construction of meaning on behavior and future actions. An individual recently diagnosed as having cancer stated, “I hope cancer doesn’t affect my future at all. I am planning on this being it. I’m planning on the five years being just an irritation.” “One day I can remember I tap danced right down
the hall after my first treatment. I just felt the love-this cancer is not delaying any part of my life.” Meaning is frequently perceived in terms of specific aspects of one’s life and future, and several individuals talked about the possible impact of the illness on their career, and indicated this meaning may affect future behavior. “I am afraid that having cancer, especially for the second time. may prevent me from doing some of the things in my career that I really want to do. I am trying to decide what choices to make.” “It has been difficult thinking that I was going to do a career change and I was going to start the second half of my life over again, and now I am finding out that I may not have that chance. Priorities have changed-I don’t know if I will be alive later.” Conversely, the impact of changes in the meaning the future holds on behavior may be positive, as indicated by the statement of a 3 I -year-old male with testicular cancer: “I feel like 1 should be doing something else for myself and for society, maybe realizing life can be shortened. I might go back to school-do something more challenging. It’s like there is this sense of urgency. which I like. I feel like a catalyst is going along to make me do things more. It is good.” This comment links what is happening within himself as a result of the illness experience to priorities for the future, and support the symbolic interactionist perspective that these two aspects of meaning are closely associated with one another and that meaning may influence behavior. It is often assumed that the meaning of life-threatcning illness, as it pertains to one’s self and to the future, may not be as difficult for elderly individuals; however, a 7l-year-old woman related, “1 didn’t plan my life like this. I had other plans-so many things I was going to do. In the beginning this made me angry, but I couldn’t let anger destroy the only time I have left. I have to pray every day that the chemo will help me and prolong my life to give me extra time to do what I really want to do.” Serious illness may also have significant effects on personal relationships, both positive and negative. with changes occurring within and outside of the family. Within the family context, each family member is forced to face the meaning of the change that is brought about by the onset of life-threatening illness in a single member. This point is clearly illustrated by a woman diagnosed as having breast cancer. who stated, “It is really extremely hard on your marriage. At first my husband just absolutely refused to believe it was life-threatening and that denial put a wall between us. You go through mns of different changes, but our relationship is much closer now, whereas 4 to 5 months ago I didn’t know if we’d make it-it was scary.” Another woman described the impact on her marriage this way, “I think our relationship is different-it is stronger and has brought us a little closer together.” In regard to family relationships in general the statement was made, “This has made me really figure out how much
The conceptualization people love and care about me. Sometimes I used to really not understand that.” Extended family relationships may be affected by the threat as well, and the following sequence is indicative of how the meaning others construct about the disease affects their behavior toward the individual who is ill. A man diagnosed as having lung cancer stated, “I have one sister, and she disowned me when my mother died and we had not talked since then. My wife asked me if it would be alright to call her. She wrote back with a card and called a few days later. She said, we’ve had our differences, but I just want you to know you are my brother and I still love you. Oh, that made a big difference.” It is important to note that this individual’s wife would probably not have contacted his sister if the meaning she constructed did not include the perception that the illness was life-threatening. Moreover, the sister’s response can also be assumed to be based on similar meaning. The meaning of changes in relationships outside the family are also both negative and positive; for example, the comment “I think friends look at me in a different light, like poor me-you know, they probably feel sorry for me,” represents a negative perspective. On the other hand, a number of individuals talked about positive experiences with respect to others; for example, “I think I have developed more friendships from this. I found out people cared more than I thought, it has been an overwhelming experience for me that people have come to me to help me with this.” “It (cancer) has made me closer to people.” In summary, the irreversible nature of changes that occur in the face of serious illness with respect to meaning, whether they be positive or negative changes, are pointed out in the following comments; “Don’t worry about it not being like it used to be because used to be is gone”; “So as I say, things are never exactly like-1 mean you don’t go back to where things were before all this came up”; “I realize that something has happened to me that will always be with me”. These statements provide evidence that the meaning which develops from earlier experiences in the crisis provides a foundation upon which future meaning is constructed.
CONCLUSlONS
Three important points made in the theoretical discussion regarding the concept of meaning from a symbolic interactionist perspective were illustrated by examples from the data. First, there is the major point in this paper that the conceptualization of meaning is comprised of two inextricably linked dimensions, self-meaning and contextual meaning. As examples have demonstrated, the individual’s specific perception of the self as a person who has to live with cancer influences his/her ongoing evaluation of the social environment and the roles s/he assumes
of meaning in illness
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within that environment. Conversely, responses of the social world to the individual who now has a new dimension added to his/her identity-that of being a “cancer patient”-frequently have a significant impact on the individual’s feelings of self-worth, competence and personal power. A second point is that the construction of meaning may influence future behavior. This was clearly illustrated in the determination of those individuals who were able to view the illness optimistically to continue their lives with a minimum of interruptions, while those who felt that life was running out for them either verbalized an urgent need to get as much done as possible in the time they had left, or they conveyed a sense of resignation to a changed life. Furthermore, persons who felt their identities had been stigmatized by the illness expressed feelings of discomfort and the desire to socially withdraw. Third, the argument was made that meaning is a dynamic phenomenon that changes over time as changes occur in the individual, in events, and in the contexts within which the events occur. This characteristic of meaning was emphasized by the comments indicating that cancer imposes a level of change and disruption that cannot be easily assimilated-individuals are forced to reorganize central aspects of their personal worlds and that involves changes in their perceptions of meaning, both with regard to their identity and to the social contexts in which they find themselves. The data also provide support for findings in the literature that the construction of positive meaning regarding an illness seems to be associated with an ability to continue to obtain pleasure and satisfaction from living [15-171. It was those individuals who could maintain a positive perspective of themselves and their future while living with serious illness who also appeared to minimize emotional distress and continue to find life worthwhile. In addition, based on data from these interviews there are several points which have clinical significance. First, the interviews point to a construction of meaning that is specr$c to the cancer experience and to the individual. The meaning of the illness does not appear to be closely related to such variables as gender or age, but it is constructed on the basis of what is important within the life of each person as s/he is affected by the illness experience. Therefore, if we are going to concern ourselves in the clinical setting with meaning as it relates to behavior and adaptation, careful assessment of the individual’s perceptions regarding how his/her identity and social world have been affected by the illness is important. Furthermore, the value of taking meaning into account in the effort to provide wholistic care is supported by the evidence that meaning changes and may be subject to the influence of others who have the power to shape an individual’s perceptions of his/her illness with regard to future possibilities, for example, physicians and other health care professionals.
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Second, most persons interviewed indicated in one way or another that their perceptions of themselves with regard to the future had changed irreversibly sometimes positively and in some instances negatively. Therefore, approaches to care that enhance a positive identity are important. Third, and of particular importance if the concept is to be clinically relevant, the meaning the illness holds for individuals must be readily discernible by others through the interview process. Importantly, this research indicates meaning is a concept that persons seem willing to discuss freely, and it appears to permeate all dimensions of their thinking relative to their illness. Although meaning has been considered in relationship to many types of life events, there have been few attempts to understand how this concept fits within the context of coping, and what its implications are for behavior and adaptation. Symbolic interactionism is particularly useful because, as pointed out early in the paper, it links the perception of self, the social context, cognition and behavior so that the role of meaning in persons’ responses to the disruption of life that results from the occurrence of a life threatening illness can be more clearly understood. It provides the framework for understanding the reciprocity between the individual’s internal response to the crisis of a life-threatening disease and the ways in which that response is modified by interaction with the social world. Subsequently, based on this theoretical perspective there is the possibility that the meaning persons associate with their illness and its treatment could serve as a clinical marker, and provide some indicataion of the quality of adaptation persons will be able to achieve. Acknu~~le&rmenls-I would like to thank the anonymous reviewers for their helpful comments on an earlier version of this manuscript. I would also like to thank William Corsaro, Phyllis Dexter, Kathleen KnaB and Ruth McCorkle for their insights and suggestions. This research was funded by the Walther Cancer Institute and The Indiana Regional Cancer Center, both of Indianapolis. IN.
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