The Illness Trajectory: understanding Being ill as a sociological phenomenon
Anselm Strausss academic work flowered in his collaboration with Barney Glaser
and their studies of dying. Out of those studies emerged the concept of dying trajectory, later, to become illness trajectory.
This paper will argue that Strauss has offered the Sociology of Illness a crucial and central concept. The life-contingency
that Parsons argued no individual could avoid, became susceptible to more detailed analysis. A concept is offered which is
readily amenable and adaptable to account for any illness situation, past or current, institutional, organisational or domestic,
chronic or acute. Light can be shed on any practical or practitioner issue. The Sociology of Illness and Patient Care is indebted
to Strauss for freeing its endeavours from the vice-like grip of Parsons sick role and opening a field of study which, because
of its universal impact, has a primary claim as generic. The concepts development spans nearly half a century and promises
to underwrite work on the interaction between professional and patients in health care for at least as long into the next
... Herbert Blumer, the scholar laureate of symbolic interactionism, had left Chicago to chair
and build a department at Berkeley, but he deliberately sought to build a balanced department, a task in which he was quite
successful. And while it also was true that Anselm Strauss was doing creative things at the University of California Medical
Center (in San Francisco), his doctoral program in sociology was embedded in the School of Nursing.[i]
The Core concept
: the Illness Trajectory [ii]
The concept of Illness Trajectory was born out of Glaser and Strauss's Dying Trajectory[iii] The trajectory refers to that social form achieved by those interactants in a series of on-going, interlocking events categorised in 'Are you a patient?' or 'Are you a nurse?'. What the patient experiences or remembers of their hospital stay or of their period of illness is their interpretation of that series of situations or that
sequence of events. The nurse,
the doctor, or any interactant involved in the series or sequence at any
point adds to, contributes to, creates some element of the trajectory by talking themselves into
it at their point or points of entry. While each will carry on or carry away from each situation in the series their own construction of the experience[iv] - their interpretation or their memory - a social form[v] results which is the amalgam of
those memories and interpretations.
This social form - the illness
trajectory - is offered here
as a method[vi] for interpreting the everyday, taken-for-granted activities that make up health care in its totality. It is total in that it does not isolate the doctor, the nurse, the technician,
the cleaner, the patient or the patients family and friends, nor any other potential
interactant, but presents all, who appear and make their impact, as essentials to the situation.
The Origins of
To Strauss, Fagerhaugh, Suczek
coined the term "trajectory" to refer not only to the physiological unfolding
of a patient's disease but to the total organization of
work done over that course of illness plus the impact on those involved with that
work and its organization. ...we shall
occasionally refer to "trajectory
work", simply meaning the various kinds of work done in managing the course of the illness and in
handling the interrelationships involved in that task.[vii]
Trajectory replaces the singular notion
of process[viii] with a more complex, multi-faceted flow of events and situations. The first
proposal in this paper is to present the trajectory in Simmels terms as a form realised in the interaction between the persons involved. Each
facet, as in view-through, of the trajectory can be represented as one helix - that is a
flow of events, rising, falling, twisting and swirling, which can be mapped.
Two purposes are
served by such a representation.
1. The first is graphical in that a diagrammatic map of
several co-flowing helices should permit the identification of points of contact, or junctures, where the
helices interlock to indicate critical phases. For example, the changes in patterns
of work around a dying patient interlock with changes in staff's sentimental
expressions, a juncture, which indicates
clearly to the patient something
- perhaps that death is now certain - and this concurrence may 'tell' the patient
while medical and nursing staff may spend days
or hours in determining whether and when the patient should be told that they are dying.[ix]
2. A second purpose is to represent 'being ill'
as a continuous on-going process
of members accomplishments which may
be understood in various ways.
the process by sequences of time,
by sequences of emotional events or by sequences
of physiological changes or by sequences of social interactions with meaningful individuals are all possibilities. But
because each selection is only one possibility, it would consequently
be an artificial representation
super-imposed on the trajectory to serve some
particular purpose - like accounting
for medical staff and nursing staff and their effective use of time or researching
the progression of an illness or treatment program or nursing care strategy.
These are artificial re-creations of the trajectory in the sense that they
are creations to serve some observer's particular
purpose. Any one view of
the trajectory - and there may be an infinite
variety of possible views - is one representation which has to be
recognised in its own terms as that one
possible view. But because that
one view can be claimed, does not invalidate any other possible view
nor render that particular selection as any more valid than any other except according to the terms in which it has been recognised.
of the trajectory and its facets as a series of
interlocking helices is simply a
device of explication, or a form. This representational device is not a
model. The selection offered here of important
facets of the trajectory is neither
intended to be complete, nor intended to suggest any prioritisation, nor to imply any suggestion of cause and
effect. Such possibilities might offer themselves when the trajectory-as-analytic is applied to a particular setting (an
intensive care unit), to some particular illness (cancer), to some form of treatment (renal dialysis), to some nursing care strategy (pain management) or to
some patient problem (getting out of here). This paper proposes
a discussion of the illness trajectory as
a common ground into which any claimant
to expertise (medical, nursing, sociological, psychological or representative
of patients' interests) can offer a view for deliberation by others from the
same or from a different 'expert' field. 'Illness trajectory' is offered as an analytic device which may
have the potential for synthesising the disparate
perspectives of all those involved in health care.
Facets of an Illness Trajectory
Why facets? Partly because the term
has not otherwise been adopted for common usage in health care. Secondly,
because the term reflects the notion of 'face' or 'view'. What is suggested is
the same usage as in facets of a diamond
- move the diamond and the light
reflected changes colour or sparkles in a different way - the viewer sees into the diamond in their own way. It is essentially a
reworking of the following idea from Anselm Strauss:-
himself to the others and to
himself, and sees himself in the
mirrors of their judgements. The masks he then and thereafter presents to the world and its citizens are fashioned
upon his anticipations of their judgements. The others present themselves too; they wear their own brands of mask and they
get appraised in turn. It
is all a little like the experience of the small boy first seeing himself (at
rest and posing) in the multiple mirrors at the barber shop or in the tailor's triple mirrors.[x]
with the idea that any participant in
the trajectory can constitute that experience by having a view of it, 'facet' seems appropriate to reflect the idea of 'a face of the trajectory that can be seen by the participant or onlooker'. But to avoid
any sense of a fixed reality, of only one
possible view, facet-as-face can be presented also as an ever-changing face of the illness trajectory.
Four facets of the illness trajectory immediately present themselves: the physiological , the temporal , the sentimental
and the social. The physiological
involves disease and disease processes. The temporal reflects the consequences of time in
illness but more importantly in the schedules of the day-to-day activities of nursing care. The sentimental facet recognises
that while all interactions of any depth involve feelings and emotions, the carer-patient
interaction is of particular interest because of the intensity of
sentiment associated with confronting
the possibility of pain and death.
The social facet pays attention to the consequences for each individual of their illness -
that they become dependent on others.
Illness, acknowledging Parsons insight[xi] that we cannot overcome illness by an act of
individual will, invariably
involves the participation of others in caring. As each facet is examined
in turn, we are looking into the trajectory through one facet at a time.
What we are seeing is the same flow of experience through different "mirrors".[xii] Each facet is simply one way of seeing inside 'health care'.
The first, the physiological facet reflects interpretations of the patient's physiological condition. That is not to suggest a description of the patient's physiological
condition and its progress through time
but is a reading of expectations based on various interpretations of the
physiology. The medical staff, individually or together, have diagnosed an 'illness
condition' [xiii], have established a prognosis, albeit
with varying degrees of certainty, and have accordingly prescribed treatment and
medication. As Robinson
suggests that set of interpretations is a consequence of the prevalent medical
'science' and medical culture characteristic of that
society, of policies determined by health authorities at
various levels, and of individually or collectively determined medical strategies
in that hospital or community setting,
each being applicable on the doctor reaching such a diagnosis. Correspondingly,
but possibly separate from the doctor's decisions, the nursing staff have their
own taxonomy of 'cues' for reading the patient's physiological condition.[xiv] In their experience, and reading the qualities of the doctor or medical team
involved, the nursing staff, individually
or collectively, may reach their own decisions appropriate to this patient's 'case'. Based on previous experience of 'their' illness, or other lay advice about their condition from friends, family, from other patients on the ward and from interpretations of clues read from doctors'
and nurses' actions and reactions, the patient reaches their own decision as to the
physiology. These three sets of
decisions may coincide in a situational diagnosis and prognosis- "I have appendicitis. I need an operation." - that is the negotiable interpretation
of the patient's physiological condition which constitutes this facet of the illness trajectory.
Experiencing the physiological order
involves physiological work. For the
patient, physiological work means experiencing pain and discomfort. The
rises and falls of recovery, feeling
feverish, the shivers, night sweating, passing into sleep, resting, all
involve some effort. Each must be experienced. Having such experiences
and understanding them, as such, constitutes the physiological facet of the trajectory. To the nurse, giving medication and observing physiological 'cues', relating those
cues to past experience and assuming or anticipating the next stage in
the physiological process similarly constitutes work. Some procedures which might encourage the patient to experience pain or discomfort, removing and applying dressing to wounds, administering
injections and enema, taking temperature and pulse, each requiring
physiological activity from the patient and each giving rise to interpretations and expectations of the patient's current or future physiological experience, all contribute to that wave of physiological experience - involve
physiological work. The doctor's tests, surgical interventions, examinations, prescriptions similarly
impact on the physiological
flow, involve work, and colour in significance and meaning through the physiological facet.
Equally, the three sets of decisions may conflict and produce two or three
disparate diagnoses and prognoses which would form different bases for a negotiated
view of the physiology. The consequences of the recognised formal power relations between
the negotiating parties involved would probably mean that the medical
view would be prominent in dictating treatment and medication for this patient. But how that treatment might be implemented and
reported on, how it might be discussed
and reviewed formally and
informally among nursing staff would see the impact of any disagreement.
Similarly, the patient's view would effect
the patient's willingness to cooperate with the diagnosis, to accept treatment
and to comply in taking prescribed medication. It might even result in 'conspiracies'[xv] between two of the three participants against the third - whether the doctor or the patient - to implement the treatment at a minimum while implementing any agreed upon alternative (say
nursing care plan) more effectively or to impose a doctor-nurse decision
on an unwilling patient. This negotiating of interpretations within the
physiological facet is on-going and may
be revised at any time during the
trajectory's path. Deterioration with new symptoms will obviously occasion a review of medical-nursing decisions. Patient's anticipation
of going home could similarly lead to revisions in the sense that new or negatively indicating symptoms may be accounted for from beyond the physiological
facet. For example, feverishness which indicates new infections might be offered
in patient interpretations as consequences of
the unduly high temperatures maintained
by the ward's central heating system.
Or the appearance of metastases in a cancer patient may change a positive classification of the patient to definition
of the patient as terminal.
The Temporal Order
Glaser and Strauss[xvi] describe the 'temporal order' - the meanings that use of time introduces to events or situations- as another facet of the trajectory. Illness has
a temporal order. For the medical staff, 'rounds' structure their view of a day and its likely sequence of events. For the nurse, an unexpected summons to the ward or to a patient's home throws the anticipated sequence of events for that day and requires a
reordering and rethinking of the remainder of the day. Similarly the nurse's shift is structured into a temporal sequence by
regularly scheduled events like
meal times or periodic observations on some or all of the patients. Particular days may be structured as operating days when the temporal order
will be noticeably different than on another weekday or than at a weekend. Similarly certain days in regular cycles will be
admissions days or days when a ward receives from Accident and Emergency Departments. In geriatric settings, daily time routines
may vary very little day by day. In
community settings, where the patient
has greater participation in determining the temporal order, no regular schedule or routine sequences of events may occur for the nurse. Other than waking and sleeping
and receiving visitors, the patient's view of the time may be passive in the sense that the routines are set by the hospital
and the patient has little power to effect changes. On the other hand, an uncooperative
patient who is demanding of staff time may disrupt, that is re-negotiate, the temporal order of the care setting. But time as a facet of the illness trajectory is only a reflection of the established or re-negotiated temporal order. Time passing is experienced by the patient and by the nurse. Some days
are slow and tedious as they happen, some weeks seem to pass by unnoticed. The common experience of visitors to a patient
is that visits pass uncommonly slowly while for the patient who has anticipated visiting time for much of the day, they pass all too fast. To the busy nurse, a minute or two at the bedside seems costly time; to
the patient the interaction was hurried and, in consequence, uncaring. How medical staff, nursing staff, patients and others
experience time-passing, how they cooperate with or fight against someone's proposed schedule and what that schedule means for these various participants fills in the temporal facet of that trajectory.
The sentimental order - experience understood as a series of sentimental events - is the third facet of the illness trajectory. Admission procedures induce fear or
nervous expectation.[xvii] Tests aggravate these concerns because
testers show no reaction in conducting the test and leave the patient to fear the worst. Strauss, Fagerhaugh, Suczek and Wiener
During the staff's busy medical work, the patient's inner struggles with himself or
herself may go unnoticed or at least not managed to the patient's satisfaction.[xviii]
Preparation for surgery while routine for the nursing staff provokes distress in
the patient which may turn into a sense of pathos or to anger. The hyperactivity
as nursing staff move down the day's
surgical list is bewildering. The patient's
turn coming suddenly amidst long
periods of empty anticipation and perceived
neglect, heighten fears nearing panic. The day rather than time is experienced
as phases of sentiment whose anticipation
renders the next hospital stay as an experience to be feared. Chronological
time has no place in that sequence of memories nor in the sentimental events as they were originally experienced. Experiencing
sentiment can be understood as moving, flowing, swirling in the same helical
trajectory as the experience of time or physiology.
The sentimental facet reveals: "the intangible but very real patterning of mood and sentiment that characteristically exists on each ward."[xix] A similar 'mood' may pervade any nursing situation. The patient at home, in intensive care,
in a psychiatric facility, waiting in Accident and Emergency, may experience phases of concern, fear, hope, despair, elation or depression. How the patient represents
that experience in interaction may effect the nurse or nursing team. Collective sentiment may be negotiated between patients
and nursing team. The impending death or the overt distress of one patient may spread through the patient group. The nurses may be equally effected either with similar feelings or because they are forced to respond
to manage the 'situation'. A day with a significant re-forming of the sentimental facet -
with a disturbance or happening which excites or distresses staff and
patients alike - will be remembered because of that experience.
Of course, the sentimental order characteristic of a ward is a very complicated
interactional phenomenon, and its maintenance is certainly not
dependent only on sentimental work. ... Nevertheless, when sentimental
tasks are neglected or badly done or ineffectively, then the sentimental order
is negatively affected - how can it not be? ...
Of course, it also contributes
to staff members' gratifications
over their work, as well
as to their own sense of identity as related to their work.'[xx]
Strauss team employ the notion that participating in a trajectory and its creation
involves 'work'. Their view is that 'being'
involves sufficient effort to warrant a sense of being as an onerous burden. While not wholly convincing, their concept
of "sentimental work" does convey the
sense that participating in a trajectory
is more than 'being' but does involve effort and commitment, if only
to be the passive recipient of care. Their division of sentimental work into
seven categories:- interactional work;
trust work; composure work; biographical
work; identity work; awareness context work;
and rectification work, is
limited by the omission of one of the facets of trajectory
introduced here, the social facet.[xxi] Their interactional work and trust work which will be discussed later, are less concerned with constituting the sentimental facet of trajectory
than with the problems involved in dealing with people as people - what
is here termed as the 'social facet'.
Participation in the sentimental facet
of the illness trajectory involves
five kinds of interaction.
The first is, then, composure work.
Nursing procedures may involve the patient in loss of face, dignity, poise or self control -
collectively defined as composure.
Bowel control, or the lack of it, is fundamental. Gross and Stone note:-
must always be in a state of readiness to act, and its appearance must make this
clear. Hence any evidence of unreadiness or clumsiness is embarrassing. Examples
include loss of whole body control (stumbling, trembling, or fainting), loss of visceral control (flatulence, involuntary urination, or drooling), and the communication
of other "signs of the animal".[xxii]
It is seriously embarrassing, not only to the patient, but also to any other
person witnessing the loss of composure. Nurses versed in composure work tend
not to show embarrassment whether they experience it or not in such situations. This ability is a source of much gratitude
and also of surprise in the patient. It also gives the nurse considerable power in restoring the loss of self esteem that accompanies loss
of composure. But being in such a situation, like many others - where
men cry, relatives are distressed, the nurse-learner is clumsy or forgetful,
the doctor errs and has to be corrected - involves sentimental demands on both the nurse and the person involved. Meisenhelder
Making time to carefully and responsively listen
to our clients strongly reinforces their self-worth. Other nursing actions which enhance self-esteem include acknowledging
clients' feelings as legitimate and valid....Our greatest challenge in influencing self-esteem is not creating the authority or proximity for the relationship, but
rather the difficult task of clearly communicating such unconditional feelings of value and worth.[xxiii]
Responding to the "difficult task" involves composure work for both nurse and
Biographical work - taking a nursing
history, finding things out about the patient for medical or nursing purposes or simply to satisfy management needs for information
or, to put it another way, reconstructing the patient's past and present self - requires asking patients to reveal a wide
variety of personal biographical details. This may involve delving into patient's secrets or invading their privacy. On the
surface many of these questions may be more or less factual involving routine responses - about age and date of birth, for
example. But in other circumstances the biographical information required is sensitive, deeply personal and embarrassing.
To achieve revelation from the patient, the nurse may need to 'invest' or to
offer comparable personal details about themselves. This process of mutual revelation costs the nurse, draining emotion and
putting her self at risk.
Similarly the third type - identity work - makes demands on emotion and sentiment of both nurse and patient. Nursing care in a number of situations involves working with patients whose identity is at risk (attempted suicide),
in the process of revision (mastectomy) or is wholly or partly lost (stroke). Reconstructing identity is the reverse of biographical work, giving self back rather than collecting it in. The
nurse engages continuously with the
patient to maintain identity often in situations where identity-spoiling is integral to nursing care (units involving
extensive use of technology). Identity work may involve significant emotional investment
from the nurse - such investment involves intensive 'work'. This is
especially the case where the patient does not or cannot respond - in coma or deeply withdrawn - when the nurse is both
parties to the interaction, perhaps doubling the emotional demand or sentimental costs.
One of the most demanding interactions in which nurses engage involves telling
patients or their relatives bad news. More taxing still is withholding
such information when it is available
though not necessarily certain, particularly when confronted with demands to tell. Where
nurses are required to withhold information and to make 'telling' decisions,
patient demands for that information have to be defrayed. Deceiving patients
in these ways and deciding when to stop the deceit - to tell - can impose substantial demands on the nurse's emotions. Glaser and Strauss have suggested that the constituents of the trajectory change around
the dying patient when the death becomes certain although before it is announced by
the doctor. Nurses read 'cues',
picked up from shared experience around different illness trajectories.
These cues confirm the likelihood of death.[xxiv] Yet that margin of uncertainty
prevents telling although the changes in interaction around and with the patient may have
already told because patients read cues too. This time coupled with the constant reminder that it bears of the nurses' own vulnerability and futility involves the most demanding exchanges in a trajectory.
Finally the sentimental facet is constituted in rectification work. In most interaction settings, participants will recognise existing rules - 'You can't do that,
here?' - or will negotiate rules to govern the current setting that their coming together creates - 'Let's not play tricks
on each other, eh?'. But such interaction rules are frequently breached leaving patients or colleagues aggrieved. Continuing
effective nursing requires that insults, senses of neglect or resentment after patient criticism, be rectified. Nurses will
be involved in much of this type of work to compensate the patient for the actions of other nurses, doctors and the whole
variety of medical personnel who come into contact with the patient. Giving excuses for others, especially ritual excuses
to cover persistent failings in medical or nursing colleagues, is emotionally costly and a drain on sentimental resources.
Yet rectification work is essential if damage done in interaction is not to so effect patients and others that the trajectory
becomes seriously distorted.
Interacting requires some effort. Interaction in an emotionally charged situation
like an illness trajectory involves greater effort. The sentimental facet of that trajectory is sustained by the kinds of
effort just described. Strauss et al note:-
... the main procedural jobs to be done, involving
as they do a sequence of tasks, the sentimental work is woven in and out of these
jobs. Sometimes the workers are quite unaware of the sentimental work; sometimes not. This work may become such an integral component of a staff member's style that possibly he or she is not always self-reflective
when doing the sentimental work, especially as the procedural work is usually salient. At any rate, during procedural work
the sequential interlacing of different types of work can be complex - their separateness perhaps only noted by an observer
who has both an eye for them and analytic purposes in finding them.[xxv]
The Social Order
As already suggested, this paper owes a great deal to the 'Trajectory' concept introduced in the work of Glaser, Strauss and their California team. In order, however,
to make greater use of their concept as an analytic it requires constant review and reappraisal. One facet of the illness
trajectory proposed here does not occur in their work - the social. The social
facet is constituted in the comings and goings of people in and out of the possible
settings which are experienced in 'being a patient' and in 'being a nurse'.
In the community, the sequences
of characters involved might include a district nurse, a health visitor, the general practitioner, a home help, meals-on-wheels,
neighbours, relatives and friends. On the hospital ward, the list is varied depending on setting, illness, ward speciality and stage in the trajectory. The early patient may meet a variety of staff - the ward
nurses in the different shifts on duty, the consultant and the various ranks within his 'firm', medical students, representatives
of the nursing or hospital management, the chaplain, various specialists to take pre-operative tests and samples, various
therapists, the cleaning staff, voluntary workers and other patients interspersed
with visiting friends and relatives. Each of these bedside visitors requires
some form of effort to open interaction, to engage in negotiation and communication and to close the visit.
The content of each visit will mark its significance more than the time that
it takes. Testers and experts can be extremely important in the search for clues and cues they might give about the expectations
for the future of the trajectory. Such visits might appear to be over far too quickly given the nervousness about negative
indications they might signal. Loneliness intermingled with fear, especially after identity assaulting 'ritual degradation
ceremonies'[xxvi] will give a much greater prominence to the identity reinforcing potential of visiting time. The 'nice chat' with the vicar may mark the high-point of an otherwise empty day for the long-stay patient. The agonies
of physiotherapy awaited with trepidation, the mystery of radio-therapy and other
high-technology settings may pose particular problems of how to deal with the individual who appears at the bedside carrying
the signals and symbols of the challenge their visit portends. Each of these visits presents demands for effort from the patient.
Each requires 'social' work.[xxvii]
The significance of the social facet of the trajectory for anyone involved
concerns their self. Goffman talks of :-
On entering the hospital, he may very strongly
feel the desire not to be known to anyone as a person who could possibly be reduced to these present circumstances, or as
a person who conducted himself in the way he did prior to commitment. ...so as to avoid ratifying any interaction that presses
a politely reciprocal role upon him and opens him up to what he has become in the eyes of others....[xxviii]
Strauss in a discussion of 'naming as an act of placement' similarly suggests
that identity depends on the individual locating themselves amongst others. Identity does not exist in a social vacuum. Social
work involves the maintenance, then, of a sense of self, of identity, by locating oneself among the others with whom the person
interacts. Transfer to an illness setting involves the work of relocating the self among new others. Usually the patient comes
to give up this taxing effort at anonymity, at not-hereness, and begins to present his/herself for conventional social interaction
to the hospital community.[xxix] The desire to avoid personal bonds that would give licence to the asking of biographical questions could also account for
this reluctance to be social.[xxx]
This phase may be suspended as the patient settles down. The patient is then
resigned to the emerging identity that the hospital situation defines. Social work changes to dealing with new interactions
with new people. And there is a constant stream of new people and, in some cases, new settings as the patient moves to different
departments for tests and evaluations or moves from ward to ward in the progress from admission through surgery or therapy
to their return home.
The constant stream through the
ward setting poses similar problems for the nurse. The consultant's rounds require preparation, especially of patients whose
presentation for the consultant has to be attended. The hustle and bustle of preparation for the consultant's rounds generally
involves tidying and ordering the ward. Patients are located in or about their bed-space. Often ambulant patients are coerced
into bed and the bed itself is remade so tightly as to restrain the patient from movement or from 'messing it up'. A consequence
of this and similar processes is to demand social work - that is to demand that the patient see themselves in an appropriate
light. They are to re-see themselves as 'patients', passive and deferent, to speak only when spoken to, not to interfere with
the orderly executing of the round. This reworking of self to be appropriate for the setting is a constant reminder of the
temporary and insubstantial form of the self in a 'total institution'.[xxxi] Being ill at home may have the same consequences when the patient is prepared by members of their family because the doctor
or the district nurse is coming.
The nurse may also engage in social work
with a variety of others whose visit may not have the same consequences for the patient but may pose problems for the nurse.
Testers and specialists appear inappropriately during visiting times or at meal
times and the significance of those present has to be reordered. The medical visitor takes precedence over the lay visitor.
Nurse managers appear who pose problems of evaluation, criticism or commendation. Bereft relatives or the anxious and concerned
raise questions which might have to be defrayed or avoided without heightening grief or anxiety. Lost strangers have to be
challenged and re-directed. New admissions require settling, admission and biography-taking. Although many of these occasions
are less demanding because their frequency evolves ritual ways of dealing with them,
each might pose an unforeseen problem. 'Social' work is ongoing. The assumption that
the district nurse has less problem because there may be fewer experts
and specialists on hand would be equally to misunderstand. Lack of control of the setting poses more problems of 'engagement'
with relatives, friends, neighbours and other visitors who might appear. Who has the right to wander into the setting is a
prerogative of the patient or their family. The family pet - dog, cat or whatever
- has similarly to be encountered in that how they are dealt with may have a significance in establishing the patient's view
of the nurse, especially for the single elderly person receiving the nurse for the first time. Again, 'social' work demands
careful handling not least because the setting 'belongs' to the patient when the ritualised possibilities of the hospital
are not available. This process of ritualising can be considered as an important feature of social work for nursing and other
caring professions. Since the day to day work of the nurse is largely concerned
with what Glaser and Strauss term the "non-accountable" features of nursing - particularly giving TLC (Tender loving care)
- then in the illness trajectory social work might be considered the more important facet for the nurse. A way of managing
these demands is ritualising - producing and using ritual ways of dealing with the array of people who occupy the trajectory
at any particular time to minimise social work. In working on clinic waiting time, I have observed the process of justifying
to grumbling patients the absence of medical staff by saying they have been detained
'for an emergency'.[xxxii] On another occasion, a sister when presented with a demand to account for the absence of a patient who had died in the night,
said: "He's been moved upstairs." This response placated other patients' concerns in the short-term until they realised that
the building had only one storey. With this realisation, the patients accounted for the demise of their friend without further
reference to the nursing staff. But social work for the nurse cannot always be defrayed. Strauss et al include two kinds of social work which the nurse cannot avoid.[xxxiii] Since both are concerned with dealing directly with the patient, I would propose seeing them in the social facet of the illness trajectory.
Strauss et al describe interactional
work, that is a recognition that nursing and
medical procedures involve the patient. The nurse has to deal with the
patient while giving an injection, applying a dressing, taking a temperature or doing
any other nursing work. While there are possibly ways of rendering the patient passive during the work, this is not always
possible. Anaesthesia, while relieving the patient of the need to feel pain, has the secondary advantage to the surgeon of
rendering the patient passive. The problem for the nurse is that nursing work often
involves overriding interactional rules, as in demanding exposure of otherwise
unexposed parts of the patient's body. In everyday interaction, people are rarely asked by others to 'indecently expose themselves'.
Although not indecent in the context of the illness trajectory, the patient has to resolve the contradiction. To do this they
are likely to intrude in the nurse's work demanding explanation or reassurance of the appropriateness of the request.[xxxiv] To gain and sustain the patient's passivity or co-operation while the nursing work is in progress, the nurse needs to interact
with the patient - interactional work.[xxxv]
Trust work - nursing patient's
may involve any number of intrusions of privacy or involve inflicting pain. The
patient's coalescence depends on trust. Establishing and maintaining that trust is a necessary part of the nurse's dealing
with patients - it involves work.
across the Illness Trajectory
Where we can 'cut across' the interweaving helices to see a patch of negotiated
meanings which each participant might recognise as their having been there, then, we can describe a 'situation'. The nurse
might describe a view of a series of actions - giving tender loving care to a patient attended by feeling satisfied with her
'success' in recognising a positive response from the patient. This would constitute the nurse's view of the situation although
it is only one event in the sequence of events which constitute 'being a nurse on that day'. The patient might view that same
situation as being calmed by a nice nurse during a period of distress and worry about their prognosis. The doctor's view might
be that a nurse talked briefly to the patient while the doctor was engaged in reviewing the patient's stage of recovery as
part of doctor's rounds. That brief exchange involving those three people can be described as a situation where three events,
each being a separate event in a separate sequence of events for each of the three participants, occurred.
But this latter approach is in
danger of rendering the trajectory, as it would the process, in the same way that previous role analyses represented a 'set of actions'. The trajectory is not a sequence of actions engaged in by a set of actors.
It is a flow of meanings or understandings, an on-going process, it has no beginning nor an end. It can be given structure
by overlaying or mapping the form with characteristics like time. We might say that the event occurred before or after other
events. We might say that a particular situation sustained for several minutes. These devices might be useful to the analyst
concerned with chronological events or with sequencing situations to make sense of them. But to the patient chronological
time is less important than relating that event to those events surrounding it
in terms of the pain or distress that were relieved by the nurse's attention. 'Amid the pain and the worry, she was nice to
me.' is the only meaning to be attached to the event as experienced or remembered
by the patient. That the event lasted two minutes has no meaning especially where time passing was not registered. To the
nurse the patient 'bucked up a bit and this pleased me in a day of otherwise routine events'. The time taken is unimportant
where the feeling of satisfaction makes memorable an otherwise unremarkable shift. Any attempt to render the events as a sequence
of 'facts' or to empirically evaluate a situation would be artificial to the nurse and the patient although the observer rendering
such 'facts' would be constructing, that is recreating, the trajectory in that form for some external purpose. Whatever that
purpose might be, completing the nurse's time-sheet, costing the patient's treatment, evaluating the nursing care, would be
to reconstruct the event and the situation in a form that neither the patient nor the nurse would recognise nor remember as
they reflected on their experiences.
Biography - slicing
down the Illness Trajectory
Anselm Strauss describes identity in:
This might be explored
by abandoning concepts like "role" and "status"... and organizing thought around new concepts which might help jolt thinking
out of its old ruts. I did adopt the concept of identity, just then coming into prominence either as a psychological (or psychiatric)
category or as a rhetorical device for criticizing and bemoaning the evils of mass society. My idea of identity had nothing
to do with either view; in fact I made no attempt even to define the term, preferring its use only as a means of opening up
discussion which would pertain to the social psychology/social organization issue.[xxxvi]
For an individual, identity may be a means of accessing (opening up for discussion)
their experience of an illness trajectory given in their account of it. A biography is then a vertical facet, a slice through
the trajectory, in being one person's account of that set of experiences. But unlike published biographies we should not expect
it to be a chronological account of events. The sequence and significance of what happens may be accounted for in terms of
the relative importance of phases of emotion, excitement or fear. Today is remembered not as a twenty-four cycle of time but
as two bouts of intense uncertainty and discomfort. 'I had a bad day, Tuesday,' may be to say on that day I do not remember
particular times but a period of depression and uncertainty of who I was and why I was here, marked by a desire to get out.
The experience passed with sleep or when that nice nurse appeared. When? is not a relevant question. It would be too simple for the nurse to dismiss such an experience
because it only lasted ten minutes. For the patient that was Tuesday. Wiener
et al make a similar point about parents experiencing the birth of a premature
Parent biography. That
parents have biographies based on who and what they are, and that these are brought into relationship with the birth trajectory,
is self-evident. But crucial to the experience are the expectations they bring to the birth. For all parents, the birth of
a child represents a radically changed biography, which may or may not jibe with their expectations. Add to
this the delivery of a distressed baby, immediately subjected to a barrage of diagnostic
and monitoring equipment, and the effect on the parents is intense. Feeding into the parental identity change are the anxieties
and attitudes of grandparents, friends, and the common wisdom regarding 'premies' and/or handicapped children. [xxxvii]
This also introduces another facet in the care of patients - the technological
- which cannot be dealt with here. Suffice it to say that machines also have biographies which although not interpretable by the machine may have significant consequences
in and for the biographies of others as in dialysis or mechanical, regular movement
of the patient.
[i] Harvey A. Farberman, Founding the Society for the Study of Symbolic Interaction: Some Observations from the
Co-Chairman of the Steering Committee, 1974-1975, Symbolic Interaction, vol. 20,
no. 2, 1997, pp. 115-129.
[ii] Sadly, Professor Anselm Strauss died in September 1996, Dr. Carolyn Weiner although retired in June 1996 maintains
a non-salaried appointment in the School of Nursing that the University of California, Berkeley. Personal Communication from
Claudia West, Director, International Academic Services.
[iii] Anselm Strauss and Barney Glaser, Anguish: A Case History of a Dying
Trajectory, London: Martin Robertson, 1970.
[iv] Harold Garfinkel and Harvey Sacks,
On Formal Structures of Practical Actions in John C. McKinney and Edward A. Tiryakian (eds.) Theoretical Sociology : Perspectives and Developments, New York : Appleton-Century Crofts 1970
[v] Georg Simmel, Soziologie, Leipzig: Duncker and Humblot, 1908, p.
[vi] Form as method is intended here as used by Simmel. See the discussion
of Simmels epistemology-methodology and
forms in Nicholas J. Spykman, The
Social Theory of Georg Simmel, New York: Russell and Russell, 1964 (first published in 1925) pp. 5-25.
[vii] Anselm Strauss, Shizuko Fagerhaugh, Barbara Suczek and Carolyn Wiener,
Sentimental work in the technologized hospital, Sociology of Health and Illness, vol. 4, no. 3,1982 p.257.
[viii] See, for example, David Robinson, The Process of Becoming Ill, London:
Routledge, 1971 and Thomas Scheff, Being Mentally Ill, New York: Aldine, 2nd ed.,
[ix] Anselm Strauss and Barney Glaser, Anguish: A Case History of a Dying Trajectory, London: Martin Robertson, 1970 and Barney
Glaser and Anselm Strauss, Awareness of Dying, Chicago: Aldine, 1964
[x] Anselm Strauss, Mirrors and Masks: The Search for Identity, London: Martin Robertson, 1977
[xi] Talcott Parsons, The Social System, New York: The Free Press, 1951.
[xii] op. cit. Strauss, 1977
[xiii] David Robinson, The Process of Becoming Ill, London: Routledge,
[xiv] op. cit. Strauss and Glaser, 1970, p.15.
[xv] Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients
and Other Inmates, Harmondsworth: Penguin, 1968.
[xvi]Anselm Strauss, Shizuko Fagerhaugh, Barbara Suczek and Carolyn Wiener, Social
Organization of Medical Work, Chicago: University of Chicago Press, 1985
[xvii] Harold Garfinkel, Conditions of successful degradation ceremonies,
American Journal of Sociology, vol. 61, March 1956, pp. 420-424.
[xviii] op. cit. Strauss, Fagerhaugh,
Suczek and Wiener, 1982, p.257.
[xix] Barney Glaser and Anselm Strauss, Time for Dying, Chicago: Aldine,
1968, *[find page reference]*
[xx] op. cit. Strauss, Fagerhaugh,
Suczek and Wiener, 1982, p.275.
[xxii] Edward Gross and Gregory P. Stone, Embarrassment and the analysis of role requirements, in Arnold Birenbaum
and Edward Sagarin (eds.) People in Places: The Sociology of the Familiar, London:
Nelson, 1973, p.113.
[xxiii] Janice Bell Meisenhelder, Self-esteem: a closer look at clinical interventions, International
Journal of Nursing Studies, vol. 22, no. 2, 1985, p.132.
[xxiv] See op. cit. Strauss
and Glaser, 1970, and Glaser and Strauss,
[xxv] op. cit. Strauss, Fagerhaugh,
Suczek and Weiner, 1982, p. 272.
[xxvi] op. cit. Garfinkel , 1956.
[xxvii] Carolyn Weiner, Anselm Strauss, Shizuko Fagerhaugh and Barbara Suczek, Trajectories, biographies and the evolving
medical technology scene: labor and delivery and the intensive care nursery, Sociology
of Health and Illness, vol. 1, no. 3, 1979, pp. 261-283, offers one example in the extensive and increasing list of specialists
who pass through delivery rooms and intensive care nurseries.
[xxviii] op. cit. Goffman, 1968, p. 136.
[xxx] ibid. fn. 27, p. 136.
[xxxii] Russell Kelly, Going to Clinic, Preston: Lancashire Polytechnic
and Preston Community Health Council, 1986.
[xxxiii] op. cit. Strauss, Fagerhaugh,
Suczek and Weiner, 1982.
[xxxiv] See Christian Heath, Participation in the medical consultation: the co-ordination of verbal and non-verbal behaviour between the doctor and patient, Sociology of Health and Illness, Vol.
6, No. 3, 1984, pp. 311-338, for accounts of similar intrusions and how they are effected in doctor-patient interaction.
[xxxv] One problem posed in interactional work for the patient and for the doctor arises in the way that doctors often
deal with this problem. Doctors resolve their problem of doing interactional work by communicating with one patient, in isolation, in reporting on the patients diagnosis,
treatment or prognosis. Patients, however, deal with this interactional work in a different way. Patients hear doctors comments
or recommendations, first, in a context of a worst scenario (what is the bad
news?) and ,then, in terms of what is being currently, or has recently been, done to other patients around them (Steves fathers
concerns about his angiogram relative to another patient sent home to wait six weeks for the same treatment, or the woman
who died soon after receiving the same recommendation). This is especially the
case in bay-style hospitals wards where same-type patients are located together or in special units (e.g. coronary care, I.
C. U.) and where awareness of immediate other patients circumstances is very high or intense.
[xxxvi] op. cit. Strauss, 1977, p.4.
[xxxvii] op. cit. Weiner, Strauss,
Fagerhaugh and Suczek, 1979, p.267.