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1996 Sense-Making Workshop

Workshop Abstracts

COPYRIGHT AND CITATION INFORMATION:
© Maas, Sylvie, 1996. Cite as: Maas, Sylvie (1996). Cancer Patients and the Time-Line Interview. Paper presented at International Communication Association annual meeting, Chicago, Illinois, May 23. Available at: http://communication.sbs.ohio-state.edu/sense-making/meet/m96mass.html

ESSENCE OF PROJECT:
Comprehensive Cancer Center IKO wants to support the improvement of the quality of information for cancer patients in the hospitals in its region. Research should tell us and the hospitals which information cancer patients in different hospitals get and which information they need. We split the project up in four 'independent' researches in four hospitals. In each hospital we interview one group of patients: patients with lung cancer (in nr.1), patients getting chemotherapy (in nr.2), breast cancer patients (in nr. 3) and surgical patients (in nr. 4). To make it attractive for the hospitals to cooperate, we promised them a research report of their own with which they could improve the quality of their information. Two reports have been finished. So, the total research project is halfway through.

In 1997, when the four reports were completed, we wanted to draw general conclusions on the SITUATIONS -> GAPS -> USES of cancer patients. However, as "the Sense-Making approach is implemented in the interview and only provides a theory of the interview not a recipe" (Dervin, April 1995 ), questions keep coming up on how to account for the results that are based on 1 to 2-hour interviews.

REASONS WHY I TOOK THIS ROAD:
At the Comprehensive Cancer Center IKO, I previously worked in the cancer information center. There I found out the doctors and nurses in the hospitals didn't regularly use the brochures about cancer from the Dutch Cancer Society even though they were free of charge and easy to get. Because of my background in communication science, I was eager to get more grip on the information exchange between cancer patients and professionals by word of mouth, as well as in written communication. I contacted 'my' faculty and met Paul Nelissen. We talked about research methods and agreed on using the Sense-Making approach.

THE BEST OF WHAT I HAVE ACHIEVED:
We got a grant form the Dutch Cancer Society in 1993. I started doing the project on my own for eight hours a week with Paul Nelissen as the scientific supervisor. As things went different from what we planned, I recruited a project assistant, Danille van Eden, in October. She was very good and did the biggest part of the work. The two hospitals that got the research report were very happy with it even though they contained criticism. They wanted us to supervise and practically support their multidisciplinary working groups that would structure and systematize the cancer patient information.

WHAT HAS BEEN PARTICULARLY HELPFUL TO ME IN THIS PROJECT:
Working with Danille and Paul. Paul gave us all the information available from Brenda Dervin. We also used a Dutch book about strategies for qualitative research ('Strategie n voor kwalitatief onderzoek', Fred Wester, 1991). Also helpful was the confidence we enjoyed from the professionals in the hospitals. For example, some doctors said they would rather have a quantitative research done - they are familiar with that. In spite of their preference, they said yes to our research project. And last but not least, the patients were helpful. Most of them were very open about their life during the disease. Their stories enlightened me a lot about what is important in life.

WHAT I HAVE STRUGGLED WITH:
Sense-Making is a developing approach and that is what Brenda Dervin writes many times. I felt very insecure because we couldn't copy the micro-moment time-line interview. In our research, it would be more interesting to get a global view of total time of illness than details of one specific situation. The latter would also be less interesting for the hospitals. What we wanted to give them was feedback about the whole process patients get through during their stay in the hospital. Second, we wondered whether the way we used and developed this interview method would give us reliable and valid results.

WHAT WOULD HELP ME NOW:
Tell people in this workshop how we developed the interviews, how we did them, etc. and hear what you think about the way we used the time-line interview.

PROJECT ABSTRACT:
[Based on the reports about lung cancer patients (hospital 1) and patients getting chemotherapy (hospital 2)]. Most cancer patients in the two hospitals were, in their own opinion, treated kindly by the professionals. However, they were less satisfied regarding the information they got or expected to get.

During and after their diagnoses and treatment, patients did have several gaps. Some patients could not be treated by their own doctors, so they had to go to another department in the hospital or another medical center. In that situation they were not well-prepared on what they might expect from the new doctor. The information patients got was not being given systematically. A clear example is the fact that the various brochures of the Dutch Cancer Society about specific tumors or treatments, like chemotherapy and radiotherapy, were not given to patients even though they would have appreciated it. To improve their way of working, the professionals should exchange more information among themselves about who said what to patient and what written material he/she gave to the patient.

In general, the professionals and patients talked mainly with each other about medical problems, even though half of the questions and problems patients identified in the interviews were not medical but rather psychosocial aspects of the disease. The professionals did know when medical problems/questions would come up. The questions about psychosocial aspects were asked, or were in the mind of the patients, at any moment of the disease. However, the professionals expected the patients to bridge the psychosocial gaps themselves. This was different with medical gaps. They were more often dealt with by the professionals even before patients asked questions about them.