Chapter 4. Research Results
4.1 Observation
The following text is written in first person and in present tense in order to make
the observation description as vivid as possible.
I am in the old building of National Taiwan University hospital, on the second
floor, in the otolaryngology department. The waiting room is full of patients; the time
is 13:30. The afternoon consultation sessions are about to start, but there is already a
patient inside the consultation room. I knock on the door and doctor L.’s assistant let
me in. Dr. L. is one of the doctors who is involved into the Management department’s
ZOHUE platform project, and he is one of the most famous specialists in treating
neck and head cancers in NTU hospital. Today the doctor will help me recruit patients
for the subsequent interviews. I am told to stand in the back of the consultation room
and have the opportunity to observe a few real-life consultations.
Dr. L. cheerfully greets each patient and checks their current situation in a very
rapid manner; I see him switching between two adjacent rooms, almost running.
Standing in the back, I am contemplating about the limited time of consultations – by
my estimation, each consultation last on average about five minutes, and there are as
many as almost fifty patients registered for consultation this afternoon. Maybe five
minutes or less is enough for a specialist to screen a patient’s condition, but is it
enough for the patients? What if they have questions they want to ask? If time does
not allow them to discuss their questions with a doctor, how do they cope with them?
It is not the first time I witness medical consultations in Taiwanese medical
organizations that last for a very short time. However, most of the patients visiting Dr.
L. are cancer patients or cancer survivors, so I assume that suffering from such a
serious disease, they must have numerous questions or doubts about treatment or
after-treatment procedures, etc. Also, the fact that I come from a country (Russia),
where medical consultations are on average no shorter than fifteen minutes, makes me
feel even more puzzled.
I keep pondering about these questions until I am asked to move to a tiny room
intended for health education (which is written on the door) but is also used as a
medical treatment room and ultrasound room. I notice how crowded it is there as I
wait for patients – there are patients, doctors, and researchers in there. In that room, I
meet a doctoral student in nursing, researcher F. After observing me for a while,
researcher F. reveals her curiosity by asking me about our project. Ten minutes later
we are involved in an active conversation lasting half an hour (an unplanned
interview), and researcher F. is indeed a treasure trove of information. Not only does
researcher F. give me the contact information to one of the health case managers of
the ear, nose, and throat department, but she also shares very valuable information
regarding information provision to patients with me from the perspective of a nurse
and a researcher. I asked researcher F. about the printed materials distributed to
patients and is told that comprehensive and well-structured educational materials exist
only for one type of cancer – oral cancer. The reason is that there is a large non-profit
medical Yangguang Foundation 3 in Taiwan, which, among other projects,
additionally leads oral cancer care development. During my next visit for recruitment
the following week, researcher F. kindly brings those printed materials about oral
cancer care to me. I continue reflecting upon this finding and two weeks later talk to
researcher F. one more time to make sure that in Taiwan there are no good sources of
well-organized information about other types of cancer provided by authoritative
foundations or organizations. Researcher F. states that there are two other
organizations, the Hope Foundation and Association of Laryngectomees,that provide
some related information, but it is still relatively scattered and incomplete. A question
rises in my mind – why is there so little official information provided in regard to
nasopharyngeal cancer and from what sources do NPC patients search for information?
According to statistical data, NPC cancer is the leading type among HNC cancers in
Taiwan (this statistical fact was stated by the abovementioned Dr. L. during a public
lecture he held last year which I attended at NTU hospital). Furthermore, this type of
cancer shows a dangerous trend of an increasing number of younger men to be among
the newly diagnosed (this was also stated by researcher F., during our first
conversation, and all of the youngest interviewees from our sample were NPC cancer
patients, 1 woman and 3 men). I ask researcher F. how and where the health-related
informational leaflets are distributed and is told they are primarily placed in wards
and patients are free to take them. However, researcher F. have noticed that they are
not taken very often. Another channel of distribution is via nurses or doctors. For
instance, researcher F. usually recommend patients to refer to these printed materials
and encourage them to check Yangguang foundation’s webpage (primarily for oral
cancer patients) since she believes that information is better presented and explained
there than in the hospital’s leaflets. Personally, I had not notice any leaflets in the
health education room I was in during my time there.
While being in the radiotherapy section’s waiting hall I have spotted a few
posters on the walls with rather rich information regarding side effects from
treatments and coping methods. Also, informational lectures have been broadcasted
non-stop on the two TV’s screens. I have also located a health education room and
found it more comfortable and larger than the one on the second floor. Interestingly,
this room was not used during my time being in the waiting hall. I spent
approximately two and a half hours in the waiting room in the radiotherapy
department.
Two venues in NTU Hospital were observed – ear, nose, and throat department
and radiotherapy department, both located in the old building of the hospital. A
greater understanding of the context of a patient’s treatment process and informational
sources in the waiting halls and health education rooms was gained and was helpful
for discussing information issues with the patients and caregivers.
4.2 Basic questionnaires’ analysis and interview data
In this section the basic questionnaires’ findings from a limited sample size of
the participants will be presented. These findings are nonetheless interesting and
useful for the following interviews’ content analysis.
For the first interviewing round, 12 interviews were successfully conducted
during May and 1 interview in July 2016 in NTU Hospital or other locations chosen
by the patients. However, the data of patient N was omitted in the results of Table 4.1
for the first round due to a technical problem while recording; no transcript was
written and thus no analysis was performed. Thus, only 12 interviews were included
in the first phase and exploratory interviews conducted in October and December
2015 were excluded. The second round of the interviews consisted of 4 patients and 1
caregiver, all of whom participated in the first round as well; caregiver L attended the
interview with patient K. Lastly, the interviews with medical professionals were held
from June 28 to September 4 2016 in NTU Hospital.
In-depth semi-structural interviews lasted between 24 to 141 minutes and
became a major source of this study’s primary data. Chinese was used as the
communication language for all the interviews and each interview was held jointly by
the author and the advisor’s assistant.
The subsequent table (Table 4.1) presents basic information of the interviewees
who participated in the first stage of interviews obtained from the questionnaires, with
additional information about the interview details. It includes an alphabetic code
assigned to each patient, gender, age, occupation, interview date, length and location;
age at which cancer was diagnosed, cancer type, stage and treatment phase.
Information about the medical treatments received is omitted since it is not highly
relevant to this section’s analysis. Among the interviewees, ten were male and two
were female; ages ranged from 37-71 years old. As to the cancer types, the study
includes four NPC patients, three from the first interview phase and one from the
second; 3 patients with tonsil cancer, 4 patients with oral cancer, and 1 patient with
both throat cancer and lymphoma. The sample is seen heterogeneous in terms of age
and cancer types. Most of the respondents are in the follow-up stage of cancer
treatment. Table 4.2 introduces basic information of participants from the
second phase of interviews.
Table 4.1 Interviewees’ basic information. Interview phase 1
Patient’s
location Cancer type
and stage Cancer
business 61:21 11/5 Patient’s home
Oral cancer (tongue)
3-4
follow-up
Notes: Patient B was interviewed with the help of his wife and communication was primarily via notes Jiang: C Male 48
46
Services
Flexible job 43:26 13/5 NTU hospital Oral cancer (tongue)
0
follow-up
Su: D Male 71 61
Commerce 57:43 13/5 Respondent’s office
Half-retired 50:49 17/5 NTU hospital Oral cancer 1
Flexible job 136:29 23/5 Starbucks cafe close to
Notes: Patient H and family member I were interviewed together Liu: J Male 59
office worker 107:31 29/5 Taoyuan city, in a cafeteria
91:23 16/7 Patient’s house
Table 4.2 Interviewees’ basic information. Interview phase 2
The information provided by 12 participants from Table 4.1 (first interview
phase) prior to the interviews is analyzed in this section. In chapter 3 the questions
from basic questionnaire were listed, and the questions 8-11 will be the focus of the
consecutive analysis:
8. problems encountered
9. sources of information
10. whether previously participated/currently participates in the activities of any Notes: Ms. Zheng attended the interview, but with very little participation due to weakness
Shi: F Male 41
office worker 140:59 29/5 Taoyuan city, in a cafeteria
Patient K and family member L had a joint interview Zeng: N Male 60
59
Retired 49:58 20/7 Patient’s home
NPC 4
follow-up
cancer-related associations or patient groups and which ones
11. whether they usually follows any blogs of other patients, other patients’ family
members, or medical doctors
Starting from question 8, some interesting findings are exhibited in Figure 4.1. In
total 9 responses out of 12 were received. 7 respondents indicated that psychological
stress was one of the major problems; five other problems that were mentioned are
insufficient medical information, financial burden, as well as three problems related to
communication: with medical personnel, with other people, or insufficient
communication with patients who suffer from the same illness. What is noticeable is
that in the hospital the author did not observe information provided for alleviating
psychological stress apart from one booklet (designed by the Hope Foundation for
Cancer Care) that was presented by a cancer patient’s family member during one of
the exploratory interviews. Moreover, keeping in mind how brief and short
consultations in the hospital are, we can infer that doctors and nurses are not able to
provide necessary help for stress relief. During our interviews we discovered a few
roots of the psychological burden. Detailed description of the reasons for
psychological problems exceeds the scope of this paper due to our focus on the
informational needs and sources, but the author preliminary suggests that some stress
triggers such as uncertainty, especially about future as repeatedly stated by a few
interviewees, might be effectively addressed by information provision.
Figure 4.1 What problems did you encounter after you were informed about your diagnosis or during the treatment process (multiple choice)?
Notes:
*Encountered problems – after being informed about the diagnosis and during the treatment
** 1 response was made in regard to the situation 20 years ago
In the next section the sources of medical information, provided as answer to question 9, were analyzed. Three main sources of information that were stated are other patients or their family members (or in 1 case, the patient’s own family
Medical
none of the listed information sources. It is worth emphasizing that the major source was other patients or their family members. This finding appeared again in the following interview content analysis.
Figure 4.2 Which were your sources of medical information after you were informed about your diagnosis or during the treatment process (multiple choice)?
As to the questions 10 (“whether previously participated/currently participate in
the activities of any cancer-related associations or patient groups and which ones”)
and 11 (“whether usually follows any blogs of other patients, other patients’ family
members, or medical doctors”), only 1 respondent provided answer “yes” and listed
detailed names of about ten organizations, patients’ groups, and blogs. It is a striking
finding in two aspects: first, it indicates that patients probably do not possess
Webpages Blogs Books Information provided by the
hospital (NTU)
Other patients or their family members (or patient's own
family members)
Frequency 6 2 1 5 7
Sources of medical information
Figure 4.2
information related to patients communities; second, patients and family members did
not recall this information, despite some respondents during the interview mentioning
that they did refer to other patients’ diaries and blogs.
4.3 Interview content analysis using the framework method
For the content analysis three topics were predetermined – information-seeking
behavior, information sources, and information needs – the topics that correspond
with this study’s research questions. In total approximately 661 pages of the
transcripts were analyzed. During partially deductive and partially inductive analysis,
a series of codes emerged, in total 22 codes. These 22 codes then were merged or
deleted during the process of refinement. Finally, 9 main codes were selected and are
presented as categories in Figure 4.3:
Figure 4.3 Themes and categories of the content analysis
During the first stage of the thirteen interviews, the cancer treatment process was
explored, we questioned about the treatment itself, about the patients’ psychological
state, and the thoughts the patients had at that time. We also discussed aspects such as
sources of information and social interactions with people or medical staff. These
discussions gave us a more complete understanding of the context of the patients’
experience from the onset of the disease to the treatment itself and to the period after Information seeking
the treatment ended. After this stage we discovered that patients did not share much
about their social life and feelings. Presumably this is due to the gender disparity of
the participants – eleven of them were males. It should be noted, however, that in
general the majority of patients with head and neck cancer are males.
The physical process of the treatment was rather similar and standardized among
the participants. However, information acquisition process differed, therefore it was
decided to conduct additional interviews with the patients and medical professionals
to explore the topic of information-seeking behavior.
In the second stage of interviews with the patients the main focus was placed on
the specific types of information that was used and how it was searched for. We
thoroughly examined the usage of hospital information sources as well since the
hospital is one of the most credible channels to acquire the specialized information. In
our series of interviews with medical professionals, doctors and one medical case
manager shared with us what information was provided, how it was provided to
patients at different stages of the treatment, and what types of information lacked
adequate provision.
Only the most representative quotes were selected to be presented in the research
results, and one sample of a transcript of an interview with patient K can be found in
Appendix 4. The interviewees’ quotes were translated into English by
Chinese-English bilingual speakers in order to ensure the authenticity and quality of
the translations. Original quotes in Chinese are cited as well for comparison. “Stage 1”
or “Stage 2” in the description of a quote’s source indicates the first or the second
stage of the interview with a participant, since there were two interviews in some
cases. In this part of the study, “we” implies the author and the professor Yu,
Jiun-Yu’s assistant, Cheng, Pei-Yi, the two interviewers of the participants.
Information seeking behavior
The first topic “information seeking behavior” is described by the three main
categories: information-seeking behavior, attitude and psychological state, and
information and anxiety.
CATEGORY 1: Information seeking behavior
This category consists of information acquisition, assimilation, retention, and
verification issues.
1. Searching for information or not searching at all when the symptoms appeared or
The participants were asked to call to memory their first symptoms and point in time
when they received the diagnosis. Then they were asked whether they undertook any
search of information regarding those symptoms or disease; subsequently, they were
questioned whether they searched for any other unusual symptoms that emerged
during the cancer continuum.
Patient F reported the following:
At that time, I tried searching online by myself, you know? The Internet tells you general information on NPC cancer. If your nasopharyngeal has tumors that are malignant, then your chances of getting nasopharyngeal cancer are above 80-90% (F 03:53 Stage 1)4
{Male | 41 y.o. | NPC stage 4 | under treatment}
Surprisingly, this behavior wasn’t very common for the participants. Nor did they
mention that family members or caregivers searched after information for them at the
onset of disease.
2. Looking for answers to questions
Asking questions and searching for information are central steps in the information
seeking process. One category of patients was used to only asking doctors in case of
any questions:
4那時候我會自己上網查嘛，它都說你鼻咽癌的話大概，那鼻咽的腫瘤有沒有，惡性的話，他大 概就佔百分之八九十以上了 (F 03:53 Stage 1)
None of it was useful. I think the only way to know for sure is to go see a doctor (E 42:39)5
{Male | 58 y.o. | oral cancer stage 1 | follow-up}
This patient E visited doctors on a very frequent basis and did not search online or for
other printed information himself. This behavior is similar to a few other participants
as well. Also, one patient and his caregiver, his wife, did not use Internet at all.
A few patients combined two methods of information seeking – actively asking
doctors and searching for information online. Yet some of them preferred to use
Internet extensively due to the abundant information presented online, but did not
discuss questions with doctors.
Two participants, C and G, showed a very passive attitude towards information
search for answers: they neither asked doctors nor did they look for information
online. Patient G did not seek for information by any method at all:
I don’t know, because I don't use the Internet and also don’t go and ask around (G 47:27 Stage 1)6
{Male | 64 y.o. | tonsil cancer stage 3-4 | under treatment}
5我覺得都沒有，我覺得唯一有用的就是找醫師而已 (E 42:39)
6我不知道，因為我不去上網，也不去打聽 (G 47:27 Stage 1)
Two other participants felt uncomfortable using limited resources such as
doctors’ time for themselves:
It's because I don't want to ask too many questions and take away all of the whatever from other patients (M 87:09)7
{Male | caregiver | 60 y.o. | throat cancer stage 1, lymphoma stage 3 | under treatment}
So you don't feel much when you're sick yourself, but you feel for the young people
So you don't feel much when you're sick yourself, but you feel for the young people