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The meaning of waiting for cancer
María Eulàlia Juvé-Udina1
1Registered nurse. Master in medical-surgical nursing, University of Barcelona, Spain

Mail delivery: Nursing Coordinator. Catalan Institute of Health. Gran Via de les Corts Catalanes 685, 08007 Barcelona, Spain

Manuscript received by 14.12.2007
Manuscript accepted by 19.3.2008

Index de Enfermería [Index Enferm] 2009; 18(1):28-31

 

 

 

 

 

 

 

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Juvé Udina, María Eulàlia. The meaning of waiting for cancer. Index de Enfermería [Index Enferm] (digital edition) 2009; 18(1). In </index-enfermeria/v18n1/e6674.php> Consulted by

 

 

 

Abstract

Aim. This paper reports, from a heideggerian phenomenologic perspective, a case study with the aim of gaining understanding on the meaning of waiting during the pre-diagnosis stage of cancer. Method. A literature review was conducted using 4 databases. Convenience sampling technique was used to invite one participant. She was interviewed about feelings and thoughts on the experience and the perception on time, space, body and relationships. Analysis was conducted using the framework proposed by Vydenlingum: listening, transcribing, reading, identifying emerging themes, comparing, and building up clusters to reveal meaning. Findings. Themes emerged from the participant's narrative of the experience. The phenomenological structure of waiting seems to be composed mainly by two opposite mechanisms: (1) responses against threat and (2) compensation and coping strategies. One third cluster was identified - Family preservation - . Results should be read cautiously yet they are not intended to be generalized. Conclusions. Understanding the meaning of waiting should be considered by all health care professionals yet, waiting is, like pain and sorrow, one of the more frequent experiences during illness. Being aware that from the first symptom to the patient first contact with the health services, and to diagnosis statement, all these mechanisms are already on, is essential to provide comprehensive and sensitive health care.
Key-words: Waiting, Cancer, Nursing, Phenomenology.

 

 

 

 

 

 

 

Background

"It would be said that three times exist: a present of the past events - memory- , a present of the current events - perception - and a present of the future events - waiting-".
(Agustin de Hipona. V c.)

    Waiting is not only related to chronological time perception but to individual exposal to life events. Phenomenologists had an ontological vision of time different from the ontic vision on our current society; time is considered not a linear dimension but the result of one's relationship with everything around oneself. The chronological/objective time, the way one organizes the day or life around the clock, and the subjective time, - lived time -, time in personal life which length is variably perceived according to personal biography, expectations, beliefs, attitudes, needs, experiences and events to face.
    Research on waiting during illness is scarce, focusing on waiting times and waiting list management or patients' expectations and satisfaction on health services. Recently some studies on the experience of waiting have been published in the international scientific literature (Gaudine et al. 2003, Poole 1997, Woodgate 2006, Wyness et al. 2002). Many of them focus on waiting on cancer, but non explores the pre-diagnosis stage. There is always a delay between the moment a first symptom exists and the diagnosis confirmation. This delay may be in part due to the patient's biography and environment and also to the health care system functioning and organization (Coates, 1999).
    The starting supposition for this essay is that waiting accompanies illness from its very beginning, from the first symptom and on, although its meaning and effects are still unknown. The main goal of this inquiry is to explore, from heideggerian phenomenology, the meaning of waiting during the pre-diagnosis stage of cancer, that is, from the first symptom to the diagnosis communication.

Methodology

    A previous literature search was conducted, to determine the state-of-the-art, including four electronic databases; Pubmed, Cochrane Library, CINAHL and CUIDEN, identifying no report on waiting in the pre-diagnosis of cancer.
    The participant, a woman aged 52, married, mother of 2 teen-agers, had been diagnosed and successfully treated of a bladder cancer 9 months before the study. She was invited to participate using a convenience sampling technique (No previous relationship between the autor and the participant) through a key informant; received information on the aims and the mechanics of the essay and gave consent. It was agreed she would received the analysis results to check experience recognition. Information was obtained through in-depth interview. The interview script was structured through the stages of the cancer experience (Carnevali et al.1990), and based on a philosophical assumption of the hermeneutics phenomenology : Perception on time, space, body and relationships, as vital worlds (Van Manen, 1990). Although the script, the interview was conducted as a conversation, allowing the participant her own flow.
    Heideggerian phenomenology is concerned with explicating the meaning embedded in lived experiences. Van Manen (1997) suggested that interpretation should be guided by a deliberate act of describing aspects of the experience in textual form. From that point, significance analysis view data as text, concerning itself as a narrative (Koch, 1995). Understanding of the phenomenon may arise through collating the participant's description.
    In this inquiry the framework described by Vydelingun (2000) was used, including: (1) Listening and transcribing the tape to set a global approach to understanding of the story and the experience, (2) Reading and rereading the transcription until units of meaning emerge, (3) Comparing units of meaning with similar characteristics in the text, constantly revising the codes and categories and (4) Selecting textual descriptions, to finally build up clusters.
    Clarification, further details and final validation were asked to the participant during the analysis to ensure preservation of the individual experience.

Results

    The experience of waiting described by the participant in the pre-diagnosis stage of cancer started with the first symptom, followed by overwhelming psychological processes that got beyond the end of this phase, the diagnosis communication. It comprises a period described as a certain loss of reality, explained by her like ".being sustained in a fearsome fog". After an initial phase of paralysis, an increase of cognitive abilities arose, allowing some balancing mechanisms to provoke decision making and action taking processes. Time perception changed. The participant was able to report extremely detailed descriptions of the experience, of her thoughts and feelings at that time. She distinguished day and night as two clearly different patterns of thoughts, but on the contrary she has some difficulties in objectively reporting chronological time, using phrases such as ".it seemed like months." . Aware that her life was potentially in peril, she also reported having the sensation of being an spectator of her own story, like in a dream-like state, revealing an internal dialogue in her head or with her body, transforming thoughts into self-conversations ".I found myself talking to myself continuously.".
    To ease presentation, clusters of units of meaning (codes to categories to families) are included in table 1. The main themes identified in the structure of the experience, expressing the essence of the phenomenon, are presented and briefly discussed.

Table 1    Fear. Fear was the first and most frequent theme described by the participant in many ways; fear of the unknown, of explaining the situation, of dying, of becoming a "patient", of the future. "I was scared because I didn't know".
    The sources of fear seem to stem from uncertainty, loneliness and hopelessness. "I was scared of having something really bad.I don't event want to say that word!". The fear was described as continuous and more intensive at night. Anticipatory fear was perceived as overwhelming. Existential thoughts accompanied fear. "What about my sons? Couldn't I be with them? Couldn't I be a grandmother?.and this was continuous, every night".
    Loneliness
. Loneliness is expressed as a state of silent suffering in which she was reluctant or unable to verbalize. "I was so scared, .just on my own.".
    "I didn't tell anybody.neither at home.". She talked about crying to herself and hiding feelings so as not to impose on the family. Loneliness was described as having an impact on time perception, and seems to be related to fear and hopelessness. The loneliness was compensated by second order proximity help search. "Time was not the same, I was really lonely and sad.". " I was so scared, just on my own.the hematuria..I did not tell anybody what was happening", ".the eco(graphy), I had such a bad time that afternoon, so alone".
    Uncertainty
. The overwhelming nature of the condition onset precipitated feelings of great uncertainty in the participant. She felt unprepared and experienced a sense of disrupted continuity among past, present and future "I thought; why not? Why me? Why now.?". Uncertainty was perceived as extending into the future, when responses to trouble could not be anticipated. "I was scared because I didn't know what could it be.anything.".
    Emotional frailty.
Outbursts of tears and anger were described like disabling her to handle both physically and emotionally. She felt paralyzed at a certain point, like being in a unsure stillness, a turbulent lull, needing time to neutralize it and start searching for help and coping. "An emotional change.I only felt like crying..I got angry with everybody".
    Hopelessness
. The participant's description on hopelessness included sensations of feeling drained, without energy. "I felt so tired". Like being unable to take action because of feelings of heaviness, a sense of despair, discourage and exhausting tension that emptied herself and add difficulty in the decision making or the taking action processes. "I didn't feel like being., working..., struggling.".
    Chronological to subjective temporality.
Time perception changes were expressed during the whole interview. The burden of the potential illness weights heavily on the participant's life. Concentrating efforts to balance suffering and emotional chaos impact on time in a way that overwhelmed her ".that afternoon, so long, it seemed like months, waiting,.so alone.". The sensation of slowing and lengthening time was described as "iced up time" difficult her on discriminating time units ".that week was eternal.time could not be the same, I was so alone, so afraid.". On the contrary, day and night patterns of thoughts helped her to keep on being oriented on time.
    Nocturnal thoughts. A certain unintended, non-completely conscious process of thoughts ordering at night was expressed ".going to sleep was not the same, those days completely different, one thought much more.on life..on everything, you know.and this was continuous, every night". Raw thoughts emerged in an echo pattern, rehearsing "At night it just came to my mind, once and another time. -something really bad-.".
    Hope generation
. Some indicators of initial hope generation processes were expressed, like needing to compensate all these stormy feelings of emotional distress. It seems she had the intuition to try to get balanced, identifying positive events with her own potential cancer experience. ".I have some relatives who had it, and they are all right, no?".
    Dysfunctional body awareness. A sort of sudden conscience of body arose. A perception of body potential malfunction and changing structures starting a non-return process arose. The "my body against me" and the sensation of losing control on it, was present in her discourse. The body seems to be distanced from the self. "I felt my whole body. what could it be?, anything!. ovarian? my liver, the stomach?.oh my god!". ".my liver.I felt it.had kidney pain.my whole body hurt". The participant described a strong sensation of her "body talking" to her, like giving signals and indicators ".before the hematuria and the days around. it was just like when I was pregnant, but different you know.your body speaks to you.".
    Avoiding
. Avoiding may have helped her to obtain a reprieve from non productive worry and having time to find reasons for hope. The participant showed forms of denial and projection, avoiding strategies, to help her diminish the seriousness of the threat and maintain a sense of being in control. "Sometimes I thought - I am sure I have nothing!.This just happens to others". "I was scared of having something really bad.I don't event want to say that word!". Initial social isolation and help search delay could also be considered strategies of avoidance used by the participant.
    Anticipation. The participant was aware of the possibility of having a cancer (middle-aged smoker, family history of cancer.), like an invisible threat. "I was so afraid, so alone..what really scared me was what I could have.I feared of having something really bad. my father, my uncle. they died..because of." (non verbal reference to bladder cancer).
    Anticipation as a way of slowly approaching the potential problem, seemed at the same time to contribute to increase fear. "I was so scared of what it could be.not only everything but.what else.ovarian?". Anticipation also expressed as a way of starting acceptance of the possibility of what could happen. ".why not?, why can't I have a tumor?".
    Second order proximity help search
. Even living in close proximity to others (relatives), she built up a kind of initial resistance to help, searching for help away. "I didn't tell anybody.neither at home.I called a friend.". First avoiding it, like giving herself time to realize her situation. Then explaining to a friend by phone, like being unprepared for a face-to-face conversation. Afterwards she explained to some nurses and finally making an appointment to the physician. ".some days later, I asked nurses what to do, I needed someone who could listen and explain everything to me.then I went to the specialist". She described nurses as a source of support and understanding. ".and they (the nurses) were so helpful, so kind, so caring. They guided me on what to do."
    Family isolation with protective intention.
During the whole conversation the participant expressed the need for protecting her family from uncertainty and sorrow, ".neither at home, I didn't want them to worry". She anticipated potential role changes. Her role of main family caregiver was perceived as clearly menaced and this seemed to annoyed her so much, ".he'd got two heart attacks these last years [reference to her husband].he worked too much.I never forgive myself if he had something because of me., the kids are so young. it's not enough with the father? now, me?.".
    Loneliness and second order proximity help search contribute to establish this self -imposed isolation from her family. One possible explanation is the need to initiate her own coping tasks before being able to assume family coping needs. "I passed it alone. could not tell them.I needed some more time.".

Discussion

    Fear, loneliness, uncertainty, emotional frailty, hopelessness, subjective temporality, nocturnal thoughts, dysfunctional body awareness, avoiding, hope generation, anticipation, second order proximity help search and family isolation with protective intention are the main issues around waiting derived from the interpretation of the participant's story.
    In the light of these results, the phenomenological structure of waiting during the pre-diagnosis stage of cancer included (1) Responses against threat, including intense and permanent fear and powerlessness, (2) Coping pre-organization and responses to neutralize fear and powerlessness, embodying anticipatory coping psycho-organic mechanisms and subjective temporality and (3) Family preservation. Time perception - lived time - is constantly influenced by this mechanisms.
    It is difficult to establish whether the significance units proposed are valid. The author attempted to remain true to the participant's experience but it is acknowledged that the need to identify themes dictated what units of discourse would be included or not, and this may have influenced, unknowingly, the results.
    It could be argued that interviewing the participant 9 months after the diagnosis is a limitation, yet time could have influenced the participant's perception. The researcher agrees with Morse (1999) when she states the paradoxical effect of time in the enrichment of narratives and information obtained. Giving time to participants can result in memories being more detailed and closer to reality than trying to get information during the period when the experience is being lived.
    Studying just one case may seem another limitation too. One case study is intended to explore new areas of knowledge and understanding not revealed before. In any case, it is was not the aim of the study to set a definitive conclusion, but to contribute to further continuous understanding.
    The phenomenological structure of waiting seems to be composed mainly by two opposite mechanisms: (1) responses against threat and (2) compensation and coping strategies. This interpretation of the results should be read cautiously yet it is not intended to be generalized.
    Understanding the meaning of waiting should be considered by health care professionals. Being aware that, from the first symptom to patient's first contact with the health care services and to diagnosis confirmation, all these responses and mechanisms are already on, is essential to provide comprehensive and sensitive care. Professionals are invited to actively listening to patients stories in order to become truly helpful, rather than assuming patient' denial of the situation, acceptance as an immediate desirable outcome, or expecting the responses to appear on a linear way, even when there is no diagnosis.

References

    Bayés R (1999). Los tiempos de espera en medicina. Medicina Clínica 113 (7): 273-77.
    Carnevali D, Reiner AC (1990). The cancer experience. Lippincott, Philadelphia.
    Coates AS (1999). Breast cancer: delays, dilemmas and delusions. Lancet 353:1112-13.
    Koch T (1995). Interpretive approaches in nursing research: the influence of Husserl and Heidegger. Journal of Advanced Nursing 21: 827-36.
    Morse J. (1999) Qualitative methods: state of the art. Qualitative Health Research 9 (3): 393-406.
    Poole K (1997). The emergence of the "waiting game": a critical examination of the psychosocial issues in diagnosing breast cancer. Journal of Advanced Nursing 25 (2): 273-81.
    Van Manen M (1990). Researching lived experiences. Sunny Press, New York.
    Van Manen M (1997). From meaning to method. Qualitative Health Research 7 (3): 345-69.
    Vydenlingum V (2000). South Asian patients'lived experience of actue care in an English hospital: a phenomenological study. Journal of Avdanced Nursing 32 (1): 100-107.
    Woodgate RL. (2006). Life is never the same: childhood cancer narratives. European Journal of Cancer Care 15 (1): 8-18.
    Wyness MA, Durity MB, Durity F (2002). Narratives of patients with skull base tumors and their family members: lessons for nursing practice. Axone 24 (1): 18-35.

 

 

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