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The Electronic Journal of Communication / La Revue Electronique de 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

 

Paul Nelissen
University of Nijmegen
Nijmegen, The Netherlands
P.Nelissen@mailbox.kun.nl

 

Daniëlle van Eden
Comprehensive Cancer Center/IKO
Nijmegen, The Netherlands

 

Silvie Maas
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.

 

Introduction

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 [1]. 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 [2] 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 [3]. 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 [4]. In this paper, we report on two of these research projects that have now been completed. They were conducted in general hospitals.

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 health problems?

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 Methodology

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 approach.

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, 1991).

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, 1983).

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:

Time focus: the period on which the respondent's questions focus: past, present, or future.

5W focus: the unit (what, who), time (when), space (where), or the connection between time and space (why) on which the respondent's questions focus.

Valence 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).

Entity focus: the unit on which the questions focus: the patient him- or herself, others, or a situation or object.

Movement focus: 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 questions:

* What patient concept underlies health practitioners' work method?

* Are health practitioners capable of recognizing [5] patients' questions?

* Do health practitioners have sufficient knowledge and skills to discuss the situation and questions with patients?

* Is there sufficient coordination among health practitioners?

* 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.

Method

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 [6].

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 procedures (1991).

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' questions.

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.

Results

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.

Supply Features

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 [7] that are beyond the standard supply package [8]. 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 D. stated:

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.

Demand Features

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 L. said:

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 is.

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 quickly.

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 illness.

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' questions.

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 process.

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.

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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 process.




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Table 2 shows that questions patients have in the course of their disease are very diverse.



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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.

Time Focus. 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 and patients.

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 from patients.

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 answers.

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 [10].

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 topics themselves.

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 situation.

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.

Notes

[1] 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)

[2] 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.

[3] 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.

[4] 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 publication.

[5] By recognition we mean health practitioners' efforts to get or remain informed about patients' gaps.

[6] 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.

[7] 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.

[8] 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.

[9] 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.

[10] 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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