"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-".
de Hipona. V c.)
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.
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.
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.
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.
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
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.
details and final validation were asked to the participant during the analysis
to ensure preservation of the individual 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.".
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
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".
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 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.".
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".
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.".
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".
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.".
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.
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?".
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
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.
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?".
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."
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.".
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.
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.
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
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.
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.
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