In the present research, five categorical clusters appeared: Self-Disruption, Cancer-Based Contextual Experiences, Individual-Environmental Preparedness, and Self-reconstruction Strategies, and the Quality of Self-Coherence; and the relationship between these five concepts have been understood by the major concept of "transitional self-disappear". Categories and components of 5 clusters can be seen in Table 3.
Table 3
Clusters, categories and components of the "transitional self-disappear" model
Cluster | Category | Component |
Self-Disruption | Temporal disruption | Touch of death, dark future, confusion in present, dissolution of the past. |
Highlighted Body | physical symptoms (severe pains, fatigue, and so on), sexual problems, physical dysfunction, bodily losses, damage to beauty, the spread of illness in the body, the continuation of illness in the body, an external organ (such as a cane) to the body, weight change, and the body in the center of attention. |
Interference in agency | Lack of personal control, dependent on others, lack of interpersonal control, and lack of job agency. |
Individual self-disruption | A feeling of inner change, confused, worthless feeling, cognitive weakness, and doubt about personal interests and goals. |
Over-differentiation | "Why me?" question, becoming unusual, and increased differentiation from others. |
Relational-self disruption | Changing meaningful relationships, abandonment/rejection by others, intra-interpersonal contradictions (contradictory perception of himself and others of his current feelings and abilities), and Family concerns. |
Painful emotional experiences | Fear, despair, hatred, anger, anxiety, shame, guilt, sadness, regret, and loneliness. |
Cancer-Based Contextual Experiences | Unexpectedness | - |
Cultural attitudes | Cancer as a catastrophe, and death. |
Explanations of the illness | Action retribution, destiny, consequence of unhealthy behaviors, and psychological stresses. |
Cancer metaphors | Cancer as a opponent/enemy, violent guest, and inspiring. |
Social feedback | Social judgments, weakening supports, annoying curiosities, and hateful compassion. |
Medical experiences | Horrific predictions, drug consequences, and long-term post-treatment consequences. |
Individual-Environmental Preparedness | Characters and coping strategies | Traits, coping styles, and values. |
Financial problems | - |
Health system performance | inadequate training, weakness in counseling, specialists' ambiguous speech, misdiagnosis, and drug/treatment deficiencies. |
Self-reconstruction strategy | Making theme | Family theme, spiritual theme, personal theme: self-idealization (building a resilient and heroic self-image against cancer) and self-centeredness (special emphasis on one's needs, compared to past neglects), and symbolic survival (doing something or creating something that makes a person symbolically stable and alive). |
Agency-seeking | Resuming activities, showing his/herself as a normal, and fighting illness. |
Redefining Identity | Redefining the body, redefining goals, and acceptance of illness identity. |
Denial of illness identity | - |
Considering illness as a stage | - |
Quality of Self- Coherence | Adjusted coherence | Awareness, valuing life, patience, and relationship promotion. |
Unadjusted coherence | Isolation, interpersonal sensitivity, irritability/aggression, gloom, and wanting death. |
Self-Disruption. The concept of "self-disruption" includes several various components that indicate a kind of cracking and gap in the experience of self and the emotions associated with this experience. By abstracting from the data, the category of self-disruption seems to be a antecedent to the phenomenon of "transitional self-disappear". In the following, each of its 7 categories is described:
1- Temporal disruption refers to the point that by touching and a close encounter with death, patients think they have lost the past, and the phenomenons of cancer and death are dominant on their present time, and the future is ambiguous and dark: "Those early days when I was newly infected the future was dark for me. I do not want to think about the future now. I thought I would not be alive any longer for another four months (interviewee N)".
2- Highlighted body refers to the point that due to severe physical experiences the person's body is in the center of his/her attention and monitoring more than before, and it seems that a rift is created between the person and his/her body: "I think I am a imperfect creature right now. That day I told my husband that I am no longer a woman at all, so I am imperfect (interviewee E)".
3- Interference in agency reflects the feeling in a patient that she/he has lost agency and control over his/her roles, tasks and actions of life (individual, social and occupational): "Compared to before my illness, I lost a lot of ability to do tasks. Well, one of my hands does not work much as before. I have to be dependent on others (interviewee J)".
4- Individual-self disruption indicates that many people with cancer state that they are different from someone they have been in the past in terms of interests, goals, inner values, and so on: "I am very different from the person I was before; one varies very much. I was completely another person before. I was very good. I am not like the previous person at all (interviewee B)".
5- Over differentiation means that when people are affected by cancer, are faced with the ontological question, "Why me? Why was I chosen to have this illness and not others?". Also, they feel that their experiences and flow of life have become very different and unusual, and their distinction from others has increased: "I am very different from people who do not suffer, in terms of my ability, in terms of my beauty (interviewee J)".
6- Relational self-disruption indicates the disturbance, being threatened, and the fragmentation of a person's definition of themselves in relation to others; because after getting cancer, significant relationships and mutual bonds of an individual are damaged. In addition, the affected person with the idea of his possible absence in the future has important concerns about important relatives and his/her relationships with them: "Ninety percent of people with cancer, like me, are those who are not seen by those around them, and have put them aside (interviewee B)".
7- Painful emotional experiences refer to a range of unpleasant emotional experiences that occur after getting cancer and damage to various dimensions of the "self: "Ever since I got cancer, these feelings have generally been inside me, perhaps a deep nostalgia, perhaps a deep disillusionment, frustrated heart, perhaps a heavy disgust (interviewee L)".
Cancer-Based Contextual Experiences. This concept means a set of socio-cultural experiences (a set of attitudes, discourses and reactions in society towards cancer) based specifically on the experience of cancer that patients with cancer face it. These experiences can affect the sufferer's self, which is now undergoing a kind of transformation.In the following, each of its 6 categories is described:
1- Unexpectedness is related to this cultural attitude that patients considered themselves far from cancer, becuase everyone believe only certain people get cancer, that is, people who have behaved wrongly and sinfully in their lives. So everyone knows him/herself away from cancer and experiences it unexpectedly: "One always thinks that this illness is for others and never suffers from such a thing (interviewee C)".
2- Cultural attitudes indicate the viewpoints of community members and those around the survivor about cancer, which included two ideas and beliefs: catastrophic (getting cancer is a very big and unsolvable catastrophe) and mortality (getting cancer means the end of life and death). "People around me said that it seems that a person who refers to the hospital for cancer will really die (interviewee K)".
3- Explanation of illness describes that cancer is usually considered as a retribution of past errors and sins, being chosen by the destiny (God, fate, world, and so on), the consequence of unhealthy behaviors and psychological stresses: "In our culture, it is believed that whoever does the wrong and sinful thing will finally get the answer (interviewee O)".
4- Cancer metaphors explain that cancer was usually known as "opponent/enemy" (rival and enemy who has attacked the person), "violent guest" (uninvited guest who is not an enemy but it is not pleasant either), or "inspiring" (a messenger that wants to inform the person): “Cancer illness is really an enemy that is hitting from within (interviewee M).
5- Social feedback indicates the unpleasant reactions and behaviors of those around towards a "person with cancer": “A man said, "What this cancer is, it's all the expense, the cost of the pain, it is better that he (A child with cancer) died, believe that his mother lives easier from now on. I hated what he said (interviewee E)".
6- Medical/ medicinal experiences explain unpleasant conversations and interactions between the patient and the treatment team and others about cancer and form a part of the survivors' lives: "The doctor told me that you would experience severe symptoms, and you would not survive for more than six months. He said we would start with chemotherapy but only six months (interviewee J)".
Individual-Environmental Preparedness. This concept includes a set of general individual or social conditions and factors that are not specific to the experience of cancer, but affect the way a person encounters what has happened. In the following, each of its 3 categories is described:
1- Characters and coping strategies explain a person's previous coping styles, traits, values, and can affect in facing cancer in confronting with the main phenomenon: "I am generally a person who tries to cope with the conditions, that is, I was the same before the cancer illness, I do not take it hard (interviewee C)".
2- Financial problems explain the very high costs of treatment and the financial problems of people at the time of getting cancer, that can affect how a person copes with the illness and its consequences: " I had to sell my daughter's golds, for chemotherapy (interviewee K)".
3- Health system performance refers to the set of inefficient programs, functions, and actions of the health system and its activists (including officials, specialists, nurses, service groups, and so on) that are not limited to cancer illness, but it can affect the confrontation experiences and procedures of people with cancer: "Unfortunately, doctors and nurses do not provide enough education about the course of cancer symptoms, and there is no proper nutrition counseling (interviewee G)".
Self-reconstruction strategy. This concept refer to strategies that are intentionally or unintentionally used to reconstruct the "self" that has been disrupted and disappeared in facing cancer. In the following, each of its 5 categories is described:
1- In the making theme strategy, after getting an illness, one tries to find a new theme or redefine some former possessions differently to make the "self" coherent around it: " I feel that my mission is just to get these two children to a stage in life where they can be independent, and no longer depend on or need anybody, then I have nothing to do in this world (interviewee O)".
2- In the agency-seeking strategy, a person tries to regain a sense of agency and control over life by resuming activities, showing his/her "self" normal, and fighting his/her illness. The consequence of this effort is a feeling of "self" again: "I exercised during chemotherapy while the doctors said you should not do it. I, by doing my activities, wanted to show that I was still alive (interviewee M)".
3- In the redefining Identity strategy, after facing an illness crisis, people try to redefine the position of the body in their understanding, accept the illness identity as a part of their identity, and emulate the heroes who have won the battle against cancer, and reconstruct themselves: "During treatment, I became acquainted with Lance Armstrong's book, and because my illness was exactly the same as his, and I can say that the book became the Quran of my life, that I did all the things he had done (interviewee M)".
4- In the denial of illness identity strategy, one tries to reform and reconstruct the fracture and disruption of “self” by denying cancer and what has happened: "From the day I realized that I was sick, I did my best to avoid anybody who has cancer. I do not want to, I did not want to accept at all that I am one of them (interviewee E)".
5- In the strategy of considering illness as a stage, regarding cancer as one of the stages of life, one tries to integrate this experience with other stages and periods of life, in this way to redefine the her/hisself life story: "When I finished the chemotherapy, I cut my hair short and took a photo and posted a story on Instagram, telling all my friends, family and acquaintances that I was going to start the new stage of my life (interviewee L)".
Quality of Self-Coherence. The quality of self-coherence explains the consequences that occur after experiencing self-disruption and applying strategies. By abstracting data, these consequences are defined in a range from adjusted to unadjusted coherence:
1- Adjusted coherence includes a set of healthy and adaptive consequences that lead one to believe that after cancer, her/his life has become meaningful and directional: "Now I understand how much a person loves life. At that time, life was not valuable to me (interviewee I)".
2- Unadjusted coherence is a set of non-adaptive consequences, and it seems that the survived person has a confused definition of "self" leads one to believe that her/his life no longer has a recognizable meaning and purpose: "I no longer have the vivacity I had before, I have no previous mood. In this isituation, I'm isolated and bored (interviewee B)".
Transitional Self-Disappear. This study developed the substantive model of "transitional self-disappear" to explain how people understand the “self” after getting cancer (see Fig. 1). This title was abstracted from the interviewees' descriptions and relationships between five major concepts. Indeed, Experiencing cancer and facing the issue of death makes people feel that the present time is a painful limbo that cuts the connection between the past and the future. That is, disruption is created in the temporary aspect of the self. This disruption and disconnection between the past, the present, and the future occur in various dimensions of understanding of self, including agency, physical, intrapersonal, relational and social, and emotional aspects. Therefore, in facing cancer, numerous aspects of experiencing and understanding the "self" are damaged and disrupted, and that previous "coherent and integrated self" is suddenly faded and lost. However this situation is not necessarily stable, rather self-disappear occurs transiently, meaning that self-disappear is an annoying but transitional stage to enter new and different conditions of life. And it is the result of self-regeneration strategies and occurs in the context in which one lives (cancer-based contextual experiences, and individual-environmental preparedness). The process of transitional self-disappear has been drawn in Fig. 2.