Article from ejc/rec
Electronic Journal of Communication
Volume 9 Numbers 2, 3, 4 1999
Information Services to Cancer Patients
THE QUALITY OF INFORMATION SERVICES
TO CANCER PATIENTS IN THE HOSPITAL: AN EXPLORATORY STUDY
University of Nijmegen
Nijmegen, The Netherlands
Daniëlle van Eden
Comprehensive Cancer Center/IKO
Nijmegen, The Netherlands
Comprehensive Cancer Center/IKO
Nijmegen, The Netherlands
Abstract. In The Netherlands, cancer
patients can turn to a variety
of agencies to obtain cancer-related information.
Health practitioners in hospitals play an important
role in supplying information to these patients, and patients have direct
and frequent contacts with the practitioners. The Comprehensive Cancer Center/IKO
(Integraal Kankercentrum Oost) is studying the quality of information services
for cancer patients in four hospitals. In two hospitals, the research has
been completed. Using Sense-Making Methodology, we were looking for answers
to the following questions: What requests do patients have for information?
How are these addressed? What is the role of the medical care network in this?
To answer these questions, we interviewed both health practitioners and patients.
Qualitative analysis revealed that the supply of medically oriented information
to patients was generally quite satisfactory. Where problems did arise, they
were due to defective coordination among health practitioners, low accessibility
of information or aid for patients, and deficiencies regarding contents. Quantitative
analysis showed more clearly that patients' questions are largely of a non-medical
kind, whereas health practitioners tend to offer medical information.
Cancer often generates many questions for people.
Information could possibly help to address some of these questions. In The
Netherlands there is an extensive health care network of agencies supplying
information to cancer patients. The Comprehensive Cancer Center/IKO, which
serves the eastern Netherlands, is one of these agencies. The center aims
to optimize the quality of care for cancer patients by supplying quality-improving
activities in its region, including research.
In 1994, the IKO commissioned a study into the quality of information services
available to cancer patients . This research showed
that the organizations in the health care network for these patients are not
fully accessible or useful. A great many agencies are operative in cancer care
but they seldom communicate among themselves. The resulting health care network
has a rather fragmented structure of information and health care services. Its
services, and its weak mutual coordination pattern, affect the desired continuity
 of health care. Another conclusion was that the information
network predominantly serves patients who are actively looking for information
and are well aware of their own situation. It is taken for granted that patients
are capable of defining their own questions and of finding the best answers
to these questions in more or less independent ways.
The research (Van Eden, 1994; Nelissen
& Van Eden, 1995) outlined the efficiency of the health care network's
information services to cancer patients. However, the IKO needed to have knowledge
of both the efficiency and the effectiveness of these services in order to be
able to fully optimize the information. The IKO wished to find out how effective
or appropriate the information supply was for the questions cancer patients
have. The importance of such research is underscored by the arrival of information
legislation since The Netherlands recently laid down certain obligations concerning
information supply . In addition to the above, increasing
demand for informational support also induced the IKO to undertake four research
projects into the effectiveness of the information services of hospitals in
the region . In this paper, we report on two of these
research projects that have now been completed. They were conducted in general
Definition of the Problem
As stated above, we wanted to gain insight
into the effectiveness of the information services to cancer patients in
hospitals. The study by Nelissen & Van
Eden (1995) showed that this issue needed to be looked into from the
perspectives of both health practitioners and patients. Information
services and supply procedures must be confronted with patients'
opinions about them; only then can we understand how and at what stages
in the disease process these services are effective or can be made more
effective. For this reason, the definition of the problem takes both
actors into account:
How do health practitioners in hospitals take
into consideration cancer patients' definitions of, and solutions to, their
To what extent do cancer patients receive attainable
and useful solutions -- in the sense of information supplied by the hospital
-- to the problems they experience due to their disease?
In this study, we particularly wished to serve a scientific
goal. We have attempted to increase our understanding of the fundamental processes
underlying the search for and use of information, and the consequences this
has for the form and content of information services. In doing so, we used Sense-Making
Methodology as a theoretical foundation for the research (Dervin,
1981, 1989). This choice implies that the research
also helps to test and develop the theory of a "new way of listening to
the audience" (Dervin, 1981).
Theoretical Foundation: Sense-Making
It is important to be receptive to patients' needs.
Health practitioners must show empathy towards patients' perspectives in
order to be able to meet patients' individual needs as completely as possible.
We need to understand patients' problem-handling processes and the role
that information seeking and use may play in them. The needs patients have
during their disease process are crucial to the form and content of information
services. In order to be able to assess the quality of information services
in hospitals, we used Sense-Making Methodology, which is a user-oriented
Sense-Making Methodology (Dervin, 1981, 1998,
1999) consists of a coherent set of meta-theoretical
concepts and assumptions, and a related set of methods that has been designed
explicitly to tap the way in which people make sense of their world around them.
The reconstruction of situational definitions by patients is central to our
research, as we assume that all cancer patients experience their disease in
their own way.
Patients suffering from lung cancer and patients undergoing chemotherapy are
the subjects of the research which this example reports. The moment cancer is
diagnosed in these patients, they enter unknown territory. Defining their situation
may then be problematic for them. Making sense of everyday life, which is Sense-Making's
key concept, is impeded. The newness of the experience may give rise to many
questions or what in Sense-Making are called gaps. Because our sense of reality
is incomplete by definition (Dervin, 1981, 1998),
people are continually facing gaps in an ever-changing environment. Past Sense-Making
studies (Dervin, 1989) have shown that actors facing
new situations will use strategies for dealing with these questions. Seeking
and using information is one of many strategies that allow actors to inform
themselves. Seeking and using information serves to bridge the gaps people experience
in their sense of reality (Nelissen,
From the perspective of Sense-Making, information is used to make personal
sense of the world around us. Information is not considered to be something
that exists independently of the individual. Information has a largely internal
existence, as one component of the individual's frame of reference. It is
a product of both direct and indirect human observation. Individuals are
constrained by the situations in which they find themselves. This is why
the search for and the use of information has its origins in (and hence
can be studied in) the individual making sense of his or her reality in
a certain context at a certain time.
Health practitioners are also situated. In their contacts with patients,
they can register questions from patients and qualify these as more or less
important. Health practitioners decide whether a solution is required and
either offer it or not. To address a patient's need for information (a solution
for what the patient experiences as a gap), health practitioners select
from many solution strategies they have in their repertoire. Therefore,
the when, how, and why of solutions will differ for each practitioner. We
hypothesized that health practitioners would differ in their offers of solution
strategies depending on their function in the health care process and their
knowledge of possible solutions. To test this hypothesis, we examined how,
when, and to what extent health practitioners addressed patients' questions.
Our application of Sense-Making draws on the central metaphor of the approach
-- the idea that humans move through time-space mandated by the nature of the
human condition to bridge gaps (Dervin, 1999). In our
application, then, we focus on three of Sense-Making's central concepts -- situation,
gap, and use. As we explained above, these concepts can be understood as follows:
people who have to face cancer find themselves in a time-space context (situation)
which may produce gaps that need to be bridged; this may induce them to seek
and use information (uses). The main research questions can also be formulated
by means of these concepts. We will briefly explain these three concepts in
further detail below.
The situation is the temporal and spatial context in which people make sense
of things. Different situations may involve different ways of making sense.
The way in which people judge situations may be influenced by different aspects
of a situation, such as the importance of the situation for the individual,
previous experiences, skill in handling the situation, and the social context.
As these aspects influence the individual's situational definition, they can
also influence and predict information needs and uses (Dervin,
Gaps are questions or information needs people have when they wish to make
sense in a space-time context (situation). Trouble-free movement is obstructed
at such a time and can be investigated by analyzing a Micro-Moment Time-Line
step. We can inquire after the subject of the gaps, the situation in which
gaps arise, and the importance of a gap.
The uses, finally, consist of the information or aid that enables the individual
to make sense again. In reconstructing the nature of the information search
process and the degree of its success, detail is important. Therefore, we asked
questions about the ease with which questions could be addressed and why, the
relevance of an answer to a question and the reason it was relevant, and strategies
for bridging gaps. Basically, the intent, following Dervin
(1983), was to attend to and be able to codify how a person's sense-making
(seen as required for movement) was facilitated or blocked.
In sum then, our aim was to get a full portrait of the gaps patients faced,
what led to them, how they attempted to bridge them and with what success,
and what outcomes (helps and hindrances) resulted.
In order to gain an understanding of the situations, gaps, and uses people
experience, Dervin has proposed using a combination of qualitative and quantitative
research methods. Qualitative research is important to expose patients'
and practitioners' personal interpretations of their situations and their
construction of gaps and uses. A quantitative approach allows us to enumerate
the differences between people and to capture these systematically in ways
useful to health care service design. Systematic enumeration by coding questions
guided by content-analytic templates gives us the opportunity to determine
and improve the quality of information services. It also gives us insight
into questions that might be expected in the future, given the assumption
that people in similar situations will have comparable questions and can
tell us something about the nature of patients' questions and about which
questions they stress during the disease process. These insights may help
health practitioners to better attune their agendas to those of patients.
Sense-Making studies to date have relied heavily on various content analytic
and text analytic procedures for translating actor responses (e.g., comments
by patients, uses, members of audiences) into systematically coded categories
of extracted themes. Our quantitative application of Sense-Making follows closely
the use of formalized content analysis schemes as described in Dervin,
Jacobson & Nilan (1982) and Dervin (1991). In
this approach, the gap-facing of the patient is conceptualized as an instance
of question-asking -- and thus the questions patients have become the unit of
analysis. We coded the questions of our patient respondents into these often-used
content analysis schemes used in previous Sense-Making studies:
the period on which the respondent's questions focus: past, present, or
the unit (what, who), time (when), space (where), or the connection between
time and space (why) on which the respondent's questions focus.
the evaluation of the time-space context, or, in other words, the evaluation
of the road chosen or to be chosen in the questions (bad, neutral, good).
the unit on which the questions focus: the patient him- or herself, others,
or a situation or object.
the movement through time and space on which the questions focus: from
past to present (how did I get here?), present (where am I now?), from
present to future (how do I get there?), and future (where will I be?).
Descriptive focus: coding
in this template is done through content descriptions. For each research
situation, a specific descriptive focus needs to be developed.
The insights from Sense-Making Methodology served
as a basis for the design and implementation of the IKO research project.
We conceptualized our research questions in part on the basis of Sense-Making's
theory. As an organizing tool for presenting our results, we focused on
both supply side and demand-side research questions. Our supply side analysis
focused on the systematics of the information supply asking these research
* What patient concept underlies health practitioners'
* Are health practitioners capable of recognizing 
* Do health practitioners have sufficient knowledge
and skills to discuss the situation and questions with patients?
* Is there sufficient coordination among health
* Is the information that is supplied evaluated?
The demand side analysis focused on the needs of
patients along these areas:
* What questions do cancer patients have?
* What is the experienced and/or expected usefulness
of sources of information in the hospital for patients?
* How accessible are sources of aid in the health
care network to patients?
* Can patients' questions be dealt with satisfactorily?
* Are there any common denominators in patients'
questions, and if so, in what proportions?
Qualitative analyses were performed to extract
supply side results; quantitative and qualitative analyses were used to
extract demand side results.
In order for the research to do justice to the different
situations in which patients may find themselves, we singled out two situations:
having a specific kind of cancer and undergoing a specific therapy for cancer.
In Hospital 1, we studied the information supply to patients suffering from
lung cancer. In Hospital 2, we focused on patients undergoing chemotherapy treatment
Data on information supplied by health practitioners were collected through
in-depth interviews. We interviewed six health practitioners who were employed
on the pulmonary ward in Hospital 1 and on the oncology ward in Hospital
2. Each interview took approximately one and a half hours. During the interviews,
the health practitioners told us about the situations, gaps, and uses they
observed in patients in their practice. This yielded data on the relation
between patients' questions and the stages of their disease process, the
extent to which the health practitioners were able to deal with questions
they observed in patients, and what initiatives health practitioners took
to improve the match between supply and demand, such as supplying either
solicited or unsolicited information.
In analyzing the interviews, we followed the analytical procedures of Wester
(1991). The interviews were transcribed, and on the basis of Wester's observation
protocols, we arranged a new series of data, systematized according to the topics
of the interviews. We thus distinguished a number of key concepts that captured
the most important themes or processes in the patient situations we researched.
After an initial analysis of the interviews with the health practitioners, we
started to interview the patients. We interviewed a total of 41 patients. In
the interviews, we examined the ways in which patients experienced their disease
process: what was their view of their various situations? What questions did
they have at that particular moment? Did they voice those questions, and if
so, to whom? Were their questions answered satisfactorily and were the solutions
useful? These interviews were also qualitatively analyzed using Wester's analytical
The interviews with patients generated a variety of questions they had during
the disease process. To do justice to this variety, our analysis was chiefly
of a qualitative nature. However, we wished to retrieve common denominators
and coherent patterns from the gaps patients experienced; therefore, we
experimented with Dervin's ideas about the quantitative analysis of respondents'
This quantitative approach meant that we categorized patients' questions
using the content-analytic templates Dervin developed. As far as possible,
this categorization was done following Dervin's instructions. Three coders
separately categorized patients' questions in the content-analytic templates
in order to test the practicability of the coding system and the reliability
of the results. In the results section, we briefly explain and exemplify
this coding system as it was employed in our research project. After coding,
the data were statistically analyzed with the aid of a statistical analysis
computer package (SPSS).
The data from the quantitative analysis supplement and support the data
from the qualitative analysis. Using these procedures, we also wished to
demonstrate that integrating qualitative and quantitative research deepens
our understanding in both practical and theoretical respects.
The results of the analysis of the interviews with
health practitioners and patients will be presented in two sub-sections:
supply features and demand features. In the supply features sub-section,
we investigate how well the information supply, particularly the way in
which information is being supplied, matches the problem situations patients
experience. This concerns not only information to patients about the contents
of medical care and other services, but also the match of this information
with patients' situations, questions, and answers. Besides health practitioners'
views of this match between information supply and demand, we will also
present some quotations here from the patient interviews.
In the second part, we discuss the demand features. On the basis of the
patient interviews, we deal with the questions from cancer patients and
the expected or experienced usefulness of sources of information in the
health care network. Finally, we present the quantitative analysis of common
characteristics of patients' questions.
Health practitioners generally picture the patient as an active information-seeking
person. Frequently, practitioners' approaches to patients are passive. Patients,
therefore, need to display active search behaviors to get in touch with various
health practitioners or to obtain additional information. Patients are particularly
expected to show active search behavior in non-medical matters and in medical
matters  that are beyond the standard supply package
. Practitioner A. said:
Actually, I only give general information.
If I'm to provide further information, there must be a question coming
from the patient.
Supplying medical information about disease and
therapy has been increasingly incorporated into patient care. Such information
is often given to patients without them having explicitly asked for it.
Some experiences of patients will serve to illustrate this procedure of
health practitioners. Patient A. explained that he was well informed by
the hospital about the examinations he would have to undergo. After the
examinations and the bad news talk, however, he was not informed about the
possibility of counseling for himself and his relatives.
And that's it then. There you are with all
this news. What was I to do? There was nowhere to go.
He would have liked to know where to turn for help.
Patient B. was suffering side-effects from chemotherapy.
First I thought it's all part of the game,
can't do anything about it. But then they said: "You should've told
us before." See, you've got to tell them yourself what's the matter.
This picture of the patient as an active information-seeker
is also found in the efforts health practitioners make to recognize patients'
questions. Once again, medical questions from patients about disease and
therapy are either recognized or expected. However, in non-medical matters
patients are expected to raise questions or possible answers of their own
accord, as health practitioners are less attentive to such issues.
Health practitioners often have little knowledge of agencies and individuals
offering non-medical care. This limits their possibilities of referring
or drawing patients' attention to such resources.
Health practitioners hardly exchange any information systematically among
themselves. In particular, exchange of information with non-medical resources
is rare. This has consequences for the degree to which patients are being
referred to those health practitioners that would be the most suitable for
their particular problem.
Health practitioners tend to focus on information exchange in a medical
sense. Patients value such consultations enormously. Patient C. quoted a
health practitioner as saying:
So I'll discuss this with my colleagues in
Nijmegen. Each patient is discussed in this group. And together we'll decide
which cytostatics are the best ones for you.
The systematics of medical information also has
room for improvement, especially when care is being transferred. Patient
I'd never heard of this internist. I didn't
know the man at all and the word oncology actually didn't mean anything
to me. But you don't have any time to stop and think. It all goes so quickly.
I thought: this internist is going to do an internal examination. Well,
and then he sits down and tells you about chemotherapy. You're crushed
in one fell swoop.
There are few structural agreements among health
practitioners about who gives what information when to patients, and how.
Practitioner B said:
As a nurse I'm not always aware of what the
doctor has discussed with a patient. Occasionally I will be informed, but
mostly it's the patient who's the one to tell you.
Systematic control mechanisms for the effectiveness
and efficiency of the information supply are not in place. Health practitioners
evaluate the information they offer in direct contacts with patients and
occasionally through other health practitioners. Although health practitioners
do check the clarity of the supply, they do not evaluate other aspects of
the functionality of the information supply. So they do not consider the
way in which the information is supplied, the time when the information
is provided, the person giving the information, the place where the information
is given, whether the information is satisfactory, the desirability of additional
information, and inhibitions patients experience in asking questions. Some
of these aspects have emerged from the patient interviews as problematic
issues. In conclusion, current evaluation practices in health care cannot
sufficiently clarify to what extent information supply is attuned to demand.
The features of cancer patients' information demands will be presented in
two parts. First, we will present the results of the qualitative analysis
of the in-depth interviews. In these interviews, we talked to patients about
questions they had during various stages of their disease process; we also
asked them what answers they found to these questions. Furthermore, we paid
attention to the experienced and/or expected usefulness and accessibility
of solutions to patients. Following this discussion of qualitative results
we will present the quantitative analysis of patients' questions.
Demand Features: A Qualitative Analysis. Health practitioners tend
to emphasize medical information exchange. Perhaps this emphasis on medical
information is due to the fact that patients' medical information needs
are more predictable than their non-medical needs: medical information has
clearly identifiable uses in certain stages of the disease process; non-medical
information needs do not adhere to the stages of the disease process in
any logical way. This is why questions from the individual patient that
concern non-medical issues always need to be made manifest in order for
the practitioner's solution to be properly attuned to patients' information
needs. This requires a greater effort from the health practitioners, the
importance of which is reinforced by our finding that patients have a great
many non-medical questions.
Information on non-medical matters is not always accessible to patients,
however, for obtaining such information requires active search behavior.
In their relations with health practitioners, patients themselves either
have to take the initiative to bring up their need for answers or they have
to go and find answers on their own in the comprehensive field of health
care. Health practitioners, therefore, often fail to take into consideration
the stressful situation patients are in or the novelty of their situation.
Their disease often takes patients to branches of health care that are partly
or wholly unknown territory to them, and patients are not acquainted with
the usefulness and accessibility of all possible kinds of health care. In
addition, they may be up against other inhibitions that may render active
information-seeking behavior impracticable, such as fear, lack of search
skills, insufficient knowledge of the functionality of solutions, and lack
of privacy. All this means that patients often have difficulty finding the
information -- especially of a non-medical kind -- that would be convenient
to them. Several patients experienced thresholds that got in the way of
their asking questions.
Patient E. said:
At first you don't dare to ask what stage you're
in. The doctor didn't say so either. So we asked about that later.
Patient F. stated on the same issue:
And then they would read aloud which problems
I'd written down. In everyone's presence: "Oh, so you were having
this and that." Then I thought: No, I'd rather wait for the next checkup
at the doctor's.
Certain things appeared to make it easier for patients
to put questions to health practitioners as patient G. reported:
We have a specific nurse assigned to us, which
is wonderful because someone like that becomes a real confidante. Another
advantage is that you ask for her on the phone if you have any questions.
And she will know exactly who she's talking to.
He never seems to be in any hurry. He always
asks very clearly: "Is there anything else?" If you come up with
anything later, you've got to phone him.
Health practitioners' communicative skills may
affect the usefulness and accessibility of solutions to patients. For example,
there are several subjects that are difficult to broach, such as prognosis,
death, sexuality, and alternative therapy. Besides, information that health
practitioners provide may not always be clear to patients, for instance
because it is couched in medical jargon. As health practitioner C. said:
Of course we talk a kind of jargon. It's difficult
to explain it in plain Dutch. Especially for people who haven't a clue
how the human body is put together.
It is not always clear to patients what is meant
by a successful course of treatment. Patient H. told us:
When I'd had the last treatment with cytostatics
and this turned out to be successful, I celebrated with a party for my
relatives. I also threw away any information I had. Looking back, I really
thought at that point that I'd been cured. The lung specialist had actually
warned me, saying: "You haven't seen the last of me yet." But
I thought he just meant I would have to come back for checkups.
Health practitioners do not always make sufficient
allowance for the patient's emotional state, or so patients indicate. Sometimes,
though, they are very good at doing so, as Patient I . noted:
Just that pat on the back. Such a human thing
to do. That's how he was telling me that he was going to fight for it too.
The doctor's support is very important
Patient J. told us:
That night before I was discharged he was very
encouraging. I know he's a religious man. And then he just says: "When
I go to sleep tonight, I'll think of you in my prayer." That's all.
Well, I think that's great. That's not what he's for, of course, he's a
doctor. But he's very human. Excellent.
The timing, delivery, and content of the information
may leave something to be desired.
Patient K. stated:
The doctor started our conversation in a roundabout
way. That he didn't have good news. That he was sure we would understand
that. Which we did. And that if we didn't make a move, I would be dead
within two months' time. That's how it went. Oh well, he wasn't beating
about the bush because we were so young. And then, after a great deal of
shilly-shallying, we'd already be talking about chemotherapy and all that,
before he finally said what was actually the matter. And I'm thinking:
for goodness sake, when are you getting to the point!
It was a Friday afternoon. I went to see the
specialist with my partner. And the doctor just bluntly stated: "It's
that form of cancer." As blunt as all that and that was more or less
the end of our chat.
Not only does the way in which health practitioners
perceive patients, but also the way in which patients perceive health practitioners,
plays a part in the information exchange. Therefore, it is also important
to be aware of a "health practitioner concept." The way patients
viewed practitioners may depend on the profession of the practitioner. Our
analysis found that both the questions asked by patients and the information
supplied by health practitioners appeared to vary according to the practitioner's
profession. The images patients have of health practitioners determines
in many cases which questions they believe health practitioners can deal
with or which answers they may find there. Thus, patients have a different
"information relation" with different health practitioners. Patient
When I'd been home for just one day, the GP
came round. A fantastic lady. She was really a great help to me. At last,
she was one to strike a note of optimism. You see, these specialists have
no time to bother with that, do they?
Patient M. stated:
No, I didn't talk with the nurses about the
operation and its consequences. No, these nurses have no idea, do they?
Well, perhaps the head nurse.
Patient N. told us:
I visited a healer three times. And after that
I was doing fine. I never told the doctor about it. It did cross my mind
that it might be helpful to others. But I didn't tell him anyway, because
most doctors don't care about that sort of thing. That's just the way it
A specialist wants to know: "How are you
feeling?" Well, then I tell him: "I have felt pretty rotten for
three weeks." But that's not what they mean, is it? They just mean:
"How's your body doing?" Yeah, they passed over that one pretty
The patient interviews showed once more that cancer
is a disease that has a major impact on life. Patients had their own ways
of coping with the disease in their lives. With the qualitative approach,
we have tried to do justice to the multitude of ways in which people live
through their disease and how health practitioners handle other people's
The insights we have gained into the concrete reality and the details of
these specific situations will be supplemented below with more general intersubjective
and systematic data that are based on a quantitative approach to patients'
Demand Features: A Quantitative Analysis. The most important features
of 695 patient questions were juxtaposed in the quantitative analysis. The questions
that were taken as a research unit are those from 17 patients suffering from
lung cancer in Hospital 1 and 24 patients undergoing chemotherapy treatment
in Hospital 2. All questions were encoded into content-analytic templates by
three coders so as to analyze as many comparable patient situations as possible.
The coders independently assigned codes following coding instructions that were
derived from the description of the various foci and the instructions of Dervin
(1991). The analysis is of an experimental and exploratory nature and allows
us to compare different questions from patients across the stages of the disease
The 41 patients mentioned an average of 17 questions each. The number of
questions patients mentioned during the disease process varied for different
stages of that process. Table 1 shows that patients had most questions during
the period of results and therapy proposals and during the therapy itself.
It was remarkable that many more questions were mentioned during therapy
in Hospital 2, which may be due to the fact that the research in Hospital
2 focused on chemotherapy treatment. In contrast with Hospital 2, the questions
were much more evenly distributed over the various stages in Hospital 1.
Hospital 1 also showed many more questions in the checkup stage, which may
be due to the fact that a higher percentage of patients probably received
curative therapies in Hospital 1. Virtually no patients mentioned any questions
in the terminal stage.
Table 1: Frequencies of gaps cancer patients had in Hospital 1 (17 patients)
and Hospital 2 (24 patients) during several stages in the disease and treatment
Table 2 shows that questions patients have in the
course of their disease are very diverse.
If we compare important features of questions or gaps from patients, patients
turn out to have all identified categories of questions. Certain questions,
however, were more pressing than others or had a different value in different
stages of the disease process. For each focus, therefore, we will deal with
the questions patients had. Where the distribution of questions over the
stages of the disease process differs remarkably from the distribution shown
in Table 1, we will specify this.
Patients' questions focused mainly on the present, on current events, and/or
situations -- 76.6% in Hospital 2 and 69.0% in Hospital 1. A relatively
greater number of questions about the future occurred in the checkup stage,
prior to therapy in Hospital 1, and in the terminal stage. This would seem
to indicate that patients live from one day to the next, especially so
during therapy. Disease causes and long-term consequences are less of an
issue at this point: the intensive therapy appears to fully engage patients'
attention. Only when the intensive therapy makes fewer demands on their
attention do questions about the future appear to resurface.
5W Focus. Patients chiefly mentioned what questions: 59.6% in Hospital
1 and 57.4% in Hospital 2. How questions also occurred more frequently,
particularly in the period of therapy proposals, the checkup period, and
the terminal stage. This is when patients appear to be preoccupied with
the specifics of their situation: What is going on? What is cancer? What
is happening to me? How can the disease be treated? How does chemotherapy
work? This period was all about taking stock of the situation and the way
it could be dealt with. It is remarkable that more why questions were asked
in Hospital 1, especially in the checkup period. Many patients suffering
from lung cancer were preoccupied with questions about the cause of their
disease, more so than other patients. Questions relating to the where,
when, and specific persons were less prominent.
Valence focus. Patients predominantly tended to have negative evaluations
of their time-space context: 76.8% in Hospital 2 and 74.8% in Hospital
1. Prospects of what was, is, and will be were dim. They had some neutral
questions, though in small numbers and chiefly during the periods of diagnosis,
therapy proposals, and therapy, and in the checkup period in Hospital 1.
The disease period and patients' questions appear to be dominated by negative
feelings like fear, depression, defeatism, and insecurity. We should observe
here that positive feelings like hope are less likely to be expressed in
questions. This may possibly distort the valence focus percentages somewhat.
Entity focus. Questions mentioned by patients focused predominantly
on the situation or on an object: 78.3% in Hospital 2 and 66.3% in Hospital
1. Some questions, especially in Hospital 1, also concerned the patient
him- or herself. The greatest emphasis on the patient's self throughout
the stages was evident prior to and after therapy. The distribution of
the percentages over the various stages reinforces the idea that, especially
during therapy, patients are entirely preoccupied with their situation.
In the periods before and after intensive therapy, there is more scope
for the patients themselves, their own perception of their situation, and
what it means for them personally. In the time focus, we see a similar
difference between the periods before, during, and after therapy. Other
people play more prominent roles during but also after therapy; relatives
and friends become increasingly important, for instance, when the patient
goes home and will have to do without the support and care of the hospital.
Movement focus. Patients focused on the point in time and space
where they are at present: 70.1% of all questions in Hospital 2 and 57.8%
in Hospital 1 focused on a fixed point in time. Only a small portion of
the questions focused on movement through time. Once again, patients were
primarily orienting themselves to their present whereabouts, not to the
future and rarely towards transitions from the past to the present or vice
versa. Because patients suffering from lung cancer had more questions about
the cause of their disease, there were a greater number of "How did
I get here?" questions for Hospital 1. Questions concerning trajectories
from the present to the future were mainly found in the period of therapy
proposals. The distribution of the questions shows great similarity with
the time focus. We observe again that questions about the future gain greater
prominence in the terminal stage.
Descriptive focus. The descriptive focus is an inductive scheme
that was derived from the questions patients had and was specifically developed
for the present research. The descriptive focus profiles themes surrounding
the patients' agendas. Patients had the most questions about medical aspects
of disease and therapy and psychosocial matters, especially questions about
emotions involved in going through the disease process and therapy. Such
emotions prevailed in the diagnostic stage and before, during, and after
therapy. Emotions concerning the social situation tended to center on the
period before, during, and after therapy. Questions about therapy were
most urgent during the therapy period itself. Problems with procedures
in health care can be observed to a limited extent throughout all stages
of the disease process. During the disease period, patients' questions
mainly reflected the disease and therapy and what these signified in their
lives. It is interesting to note in this respect that, on the whole, most
questions arose in the period prior to and during therapy (70%). Finally,
we would like to underscore that patients had at least as many questions
of a non-medical kind (43.3% in Hospital 1 and 37.6% in Hospital 2) as
of a medical kind (45.9% in Hospital 2 and 42.4% in Hospital 1).
Conclusions and Discussion
In this paper, we have drawn a picture of the interaction
between health practitioners and patients in everyday practice. What has
struck us in the research is the trust patients have in health practitioners.
This is especially true for medical care. Nevertheless, the research has
also identified some bottlenecks in the flow of information between practitioners
A major bottleneck in the interaction between health practitioners and patients
is their handling of non-medical gaps. Health practitioners rarely raise
non-medical subjects, and patients ask few questions on these matters. In
the communicating between health practitioners and patients, it is a subject
of modest proportions. Nevertheless, the quantitative analysis of the patients'
gaps demonstrates that a major share of their questions is about non-medical
issues. We consider the patients' will and motivation to fight back a major
component of their cure. The strictly "professional" handling
of the dialogue by health practitioners may be seen as a failure.
Some non-medical questions may never be voiced, even more so during certain
stages of the disease process. Previous research (Melief,
1991; Schrameier & Brunenberg, 1992) mentions under-reporting of psychological
gaps. Schrameier & Brunenberg (1992) point to so-called individual psychological
processes as causes of such under-reporting: patients use mechanisms like repressing
negative impulses and emotions. Previous research has also shown that if one
has been exposed to threatening stimuli for longer time spans, subsequent stimuli
are experienced as less threatening (ibid, p.105). This would mean that if such
psychological mechanisms weren't present, one might expect to find more questions
Besides these individual-based mechanisms, our research has revealed repression
processes that are linked to the personal situational definitions by patients.
Sense-Making theory rests on the assumption that as researchers we cannot
limit our understanding of people's needs to the confines of systems interactions.
The way a situation is experienced by patients, including interactions with
health practitioners and the social environment, may give rise to non-definition
of psychosocial gaps. The therapy stage, for example, may be characterized
as a situation of day-to-day survival. Threatened life is given over into
the hands of expert health practitioners. This may give patients hope: something
is being done about the disease, and its life-threatening character fades
into the background for the time being. Patients often experience the therapy
situation as a hectic period that grants them hardly any time to stop and
think about how all this makes them feel. Curative therapy and receding
danger sometimes persuade people never to look back. Negative feelings can
also be repressed by a positive outcome. Others do have more non-medical
questions after therapy, possibly as a consequence of having more time available
or because they can no longer evade their questions or hide from their disease.
The interviews with health practitioners and patients from Hospital 1 initially
led us to expect that patients' matter-of-fact attitudes would cause them
to manage their diseases in rather non-emotional ways. Especially after
therapy, emotions would have to be more subdued in that case. The quantitative
analysis, however, does not confirm this expectation as this group of patients
kept mentioning emotional gaps, neither fewer than the patients from Hospital
2 nor fewer in the checkup period.
It is possible that the magnitude of the non-medical issues actually exceeds
the results of this study. But the number of non-medical questions reported
would already qualify the lack of attention for this subject in practitioner-patient
interactions as a definite problem.
An important explanation for this lack of information exchange on non-medical
matters are the images health practitioners and patients have of each other.
The extent to which these actors show empathy with each other's positions
is limited. Health practitioners expect patients to be active and to express
questions if they have any; they restrict recognizing and discussing questions
to medical matters. Their knowledge of agencies that might offer non-medical
aid is deficient. The lack of mutual coordination among health practitioners
and the non-evaluation of the usefulness of the current information supply
impede a systematic working procedure.
Conversely, patients themselves expect that they can only raise questions
they judge to be appropriate to the health practitioner's specialization
or function. This causes problems for questions on non-medical matters:
patients do not expect to get answers to explicit non-medical questions
from medical health practitioners; health practitioners tend not to recognize
or introduce such questions.
We may conclude that in practitioner-patient interactions the image these
actors have of each other plays a major role: it determines how people interpret
the situation and which questions and answers are considered suitable topics
for discussion. Both in the discussions of non-medical problems and our
study of other issues, this is evident. It would also seem that the image
of the communication partner is not established in mutual interaction but
is already preconceived prior to interaction.
The images patients have of health practitioners tend to be rather traditional.
The specialist is considered as a health practitioner with considerable
expertise. The specialist knows what is best for the patient. Some patients
still put the physician on a pedestal. Nurses are known to be caring attendants.
Nurses are good to talk to. You only turn to a psychologist or a psychiatrist
if you are crazy. Such traditional conceptions still appear to be part and
parcel of current medical practice. This is partly why many questions patients
have or answers they seek do not seem to be proper subjects for discussion
in the hospital.
This finding leads us to conclude that adjusting the supply-demand balance
cannot be done merely by changing the working procedures of health practitioners
and introducing non-medical matters as topics of conversation. It is important
for health practitioners and patients to enter into a relationship, to get
to know one another, and to make realistic assessments of each other. To
promote such a relationship, health practitioners should recognize gaps,
evaluate relationships with patients, adjust their linguistic performance,
and show empathy with their patients' situations. Fine-tuning themselves
to their patients will be facilitated by the knowledge this research project
has generated on the various situations patients are in, with their prevalent
questions and possible answers to them. Coordination among health practitioners
themselves also merits attention, in order for the patient to be informed
by the most suitable source of information at the most opportune moment.
It is also important for health practitioners to be aware of the network
of agencies that supply information to patients. This would enable health
practitioners in hospitals to act as intermediaries between patients with
questions in many areas and agencies that might be able to offer adequate
Shaping their relationship with patients requires many efforts from health
practitioners. For health practitioners it should be a structural component
of their work. For patients it is more difficult to shape the relationship
with health practitioners: they are unacquainted with many things as their
experience with disease and health practitioners will generally be incidental
and sudden. Health practitioners can help them to cope with their situation
and invite them to be open in their mutual relationship in order for the
health practitioner to be able to supply the best possible care to the patient.
The great trust patients put in health practitioners can serve as a driving
force in optimizing the information supply.
Looking back at the theoretical foundations of this study, we can state that
our approach has yielded a well-developed and useful picture of the interactions
between health practitioners and patients. The way in which these actors define
their own situation also determines the way in which they deal with questions.
The research has particularly revealed the constraints patients and practitioners
personally experience in managing their own reality .
Finally, we would like to consider the research methods we used. It is useful
in evaluating the strengths and weaknesses of this research to focus first
on some of its limitations. As the situation that was investigated here
is highly complicated, we will first take a closer look at the validity
of the data and the observation method that was used to obtain them. The
interviews make mention of a rather dramatic situation, which made talking
about the disease period an emotionally charged event, especially for patients.
There also appeared to be delicate subjects or taboos that people have difficulty
broaching. This applied not only to patients but, rather surprisingly perhaps,
also to health practitioners. Talk about death and sexuality was inhibited,
and the prognosis of the disease was an especially thorny subject. This
made it difficult for the interviewers to gain a clear understanding of
these topics. Hence, these topics remained mostly unaddressed in the interviews
(in particular by patients) and are absent from our data. The length of
the interview also made it impossible to enter into all situations in detail
and collect full data on the entire disease period. What this study does
show is the disparity between how health care practitioners look at the
disease situation and how patients do. From a Sense-Making perspective,
patients understandably discuss those subjects that mattered most to them
and to the conduct of their lives. For practitioners, the disease is a central
point of focus, whereas for patients it rarely is except perhaps as an intrusion.
We believe that patients discussed those topics that mattered most to them,
which is also why they had clear memories of these things. In the interviews,
we continued to ask questions until patients no longer introduced new information.
Patients' thought processes were also stimulated by the interviewers raising
In reading the results of our study, health practitioners indicated they
recognized themselves in the findings. Similar results can be found in the
literature on this subject reviewed earlier. This has reinforced our conviction
that the data and their analysis are a valid representation of the research
The reliability of the observation method is high. Interviews were continually
held with new patients in new hospitals. The data from all these interviews
show many similarities.
We would like to mention the following points about the reliability of the
quantitative analytical methodology. The inter-coder reliability values
as reported in Table 2 would be considered acceptable given the stringent
coding conditions we mandated. All three coders were required to code all
units of analysis. The reported reliability values were constructed on all
units of analysis. We have come across some matters that reduced inter-rater
reliability, which may be circumvented in future. First of all, the questions
as formulated by patients were adopted by us as coding units. This rendered
the context of the questions unclear to coders who were not familiar with
the interviews, making coding more difficult. For example, for the question
"What can I expect?" one needs to know that the patient was asking
this question with regard to the chemotherapy he or she will undergo, or
it will be hard to determine its descriptive focus. Henceforth, it is advisable
to put questions into context.
Training of coders prior to coding was only limited. In spite of the fact
that coders had received instruction in the subject matter, the interpretative
framework they had is still apparent in various codings. More extensive
training and clearer coding instructions will increase reliability.
Our quantitative findings were consistent with our expectations formed by
our qualitative analysis. All in all, the quantitative analysis provided
useful results. The analysis succeeded in achieving its aim of deepening
our understanding of the qualitative research data by means of the quantitative
analysis of patients' questions. The qualitative analysis revealed the individual
characteristics of the patients' situation and their interactions with health
practitioners. The quantitative analysis has translated these differences
between patients into general and systematic concepts. Combining the qualitative
and quantitative applications of Sense-Making Methodology has enabled us
to assess the quality of cancer information services designed for patients
as they are seen through patients' eyes.
 In this study we discovered a
network of 74 local, regional and national operating organizations, providing
information on a wide range of cancer related items. (Van
Eden, 1994; Nelissen & Van Eden, 1995)
 Continuity of care can be realized by horizontal and
vertical coordination of care. Horizontal coordination concerns the coordination
of contacts among various health practitioners or disciplines within a particular
stage of the disease process. Vertical coordination concerns the coordination
of contacts among various health practitioners or disciplines in the transition
between stages of the disease process.
 The obligations have been laid down in the Medical Treatment
Contract Act (WGBO) (Francissen, 1994), the Individual
Health Care Provisions Act (BIG) (Bersee, 1994), and the
Care Institutions Quality Act (Werf, 1996). The most important
here is the Medical Treatment Contract Act. It formulates an information duty
from health practitioner to patient. The health practitioner must provide clear
information about therapy and/or examination. In addition, the health practitioner
must always obtain permission from the patient for therapy. The information
duty and the permission requirement are closely related: there always needs
to be "informed consent." The health practitioner is also legally
bound to keep up a file on information supplied to the patient. Finally, protection
of the patient's privacy has also been laid down in this law.
 These research projects were supported financially by
the Dutch Cancer Foundation - The Queen Wilhelmina Fund (see Eden
van, Maas & Nelissen (1996a, 1996b)). Portions of this research have
been published in Dutch journals. There has been no previous English language
 By recognition we mean health practitioners' efforts
to get or remain informed about patients' gaps.
 Eventual agreement to cooperate with these proposals
was preceded by talks with the supervisory committee and permission from the
Medical-Ethical Commission (MEC). It was agreed with the MEC from both hospitals
that the IKO would make sure that patients would not feel in any way obliged
to cooperate. During the interview itself, patients were also clearly given
the opportunity to terminate proceedings if they felt overpowered by their emotions.
 We make a distinction between medical and non-medical
information. We do so because the information supply shows clear differences
between types of information for each professional group. Medical information
should be interpreted as information with a medical angle, such as technical
or practical information about diagnostic examinations, disease, therapy, side
effects, and consequences of therapy. Suppliers of this kind of information
include lung specialists, internists, and nurses. Non-medical information is
information that is obviously related to disease and therapy but that, strictly
speaking, does not concern medicine. It deals with patients having to face up
to cancer and its treatment in their lives. It is about the patient's "new"
life and ways of coping with it. Information may be about running a household,
options for physiotherapy, alternative medicine, support groups, the psychologist,
the social worker, information services for patients, Integrated Cancer Centers,
and the Queen Wilhelmina Fund.
 By standard information we mean the medical information
that is required for a basic minimal understanding of disease and therapy. Health
practitioners often supply this kind of information in any case.
 Stempel's methodology calculates percentage agreement.
Scott's methodology adjusts the percentages for the probability of scoring in
certain categories. This is why they are mentioned separately in the table.
 We are aware of the fact that the study was confined
to patient-health professional interaction while relatives and possibly other
groups of actors (e.g., the media) play a role in their sense-making itinerary
and thus affect the relation between patients and practitioners.
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