Chapter 4. Research Results
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 who are sick (G 71:09 Stage 2)8
{Male | 64 y.o. | tonsil cancer stage 3-4 | under treatment}
3. Interaction with other patients, other family members, or caregivers in the hospital
One family member I and participant K had the following experience in the
waiting rooms of the hospital:
People end up coming to ask us and we then share with them (I 39:27)9
{Female | caregiver | 60 y.o. | tonsil cancer stage 3 | follow-up}
In order to know more about other people's (pause) experiences, so when I go to the hospital and see people who are there to see the doctor or doing radiation therapy, I would always go ask those who have nasogastric tubes, asking them about their tubes
7因為我不希望問太多問題相對剝奪其他病人的一切什麼的 (M 87:09)
8所以你對自己生病沒有太多感覺，你反而是對於那些年輕的人生病有感覺 (G 71:09 Stage 2)
9變成人家會來問我們，那我們也會分享 (I 39:27)
and what they feel like, being very detailed. You have to be proactive in going to find people to ask (K 62:22 Stage 2)10
{Female | 37 y.o. | NPC stage 4 | follow-up}
Patient K shared an important comment with us:
…it’s because the doctor is unable to tell you definitively what exactly your condition will be like later on (K 62:56 stage 1)11
{Female | 37 y.o. | NPC stage 4 | follow-up}
4. A patient or a family member or a caregiver looks for information?
The majority of the interviewees did not mention that family members or
caregivers actively looked for information for them. However, caregivers I and L
reported they were in control of information seeking and information organization. In
response to the question whether they would read the information provided by the
hospital, caregiver I replied to the question ending with:
Of course it is me who reads, not the patient (I 79:19)12
{Female | caregiver | 60 y.o. | tonsil cancer stage 4 | follow-up}
10我那時候為了要多知道別人的(停頓)經歷嘛，就是我去醫院如果有看到有人在看門診或是放療 的時候，我都會，有插鼻胃管的，我都會跑去問，問他說欸你這個鼻胃管怎麼樣啊，感受什麼什 麼，都會問很細，就是要變得要自己主動去找人問 (K 62:22 Stage 2)
11 ⋯⋯因為醫生他也沒辦法很明確的跟你說你接下來狀況會怎麼樣 (K 62:56 stage 1)
Apparently, family or caregiver plays an important role in information and resources
search, especially during the exhausting treatment period.
5. Information behavior before visiting doctor
Few patients said that they recorded their questions or prepared their questions
prior to the doctor’s visit. Patient K, for instance, used to prepare thoroughly as shown
in the quote below:
So, I started doing my own research. Now, every time I have a question, I’ll write it down and ask the doctor at my next consultation. I now feel that doctors are too busy.
Their time is limited. Within this small window of time, I need to ask the doctor the right questions so that the doctor can answer them (K 46:33 Stage 2)13
{Female | 37 y.o. | NPC stage 4 | follow-up}
Furthermore, this patient would search for additional information on the Internet
after her visits to doctors.
6. Information recording and storing
Participants I and L, both of whom are caregivers, used diaries to record
treatment information as well as emotional states, problems, for example as in the
case of caregiver I:
13我就開始會做功課， 所以我現在每次我想到什麼問題我就會寫起來，下一次看診我就會問醫 師，我現在覺得說醫生他真的太忙了，他的時間有限，所以我們要在很短的時間抓到重點問醫生，
醫生才能回答你 (K 46:33 Stage 2)
When he was ill, I prepared a piece of paper, size A4. It’s because I needed to note down a lot of things about the food I made for him everyday as well as the portions.
Also, during this time, I noted down his many emotional reactions. No, no. There’s one more thing…let me be honest, my own emotional release as well…(I 103:24)14
{Female | caregiver | 60 y.o. | tonsil cancer stage 4 | follow-up}
Another patient K showed a very active behavior in information recording:
Figure 4.4 Information collection and organization, participant K
Information was collected from different sources, printed out and then put
together in a folder in a systematic and organized manner. Parts of information that
were not fully understood or were seen as important were usually underlined by the
14我有在他生病的時候，我自己就準備A4的那種紙，因為我每天要給他做很多食物，吃多少，還 有他在這中間有哪些情緒的反應，不，不，還有一點，我現在講實話，也是我情緒的發洩⋯⋯ (I 103:24)
patient. The patient perused information both in Chinese and sometimes in English.
The list of frequently used online sources by this patient is provided in Appendix 3.
This behavior of information organization is the only case that we encountered among
the participants.
7. Information on the Internet is regarded only as reference
Patient F would spend about 3-4 hours a day looking for information online, but
he admitted the following:
Yeah, I’d say the information online is only for reference…I just want to get a rough idea. I wasn’t all that serious about it(F 10:12 Stage 1)15
{Male | 41 y.o. | NPC stage 4 | under treatment}
One of the arguments that was emphasized is that each patient’s situation is different
and thus information online should not be completely trusted.
8. Verification of online or other information
All the participants were asked to comment on how they verify online
information or information received from other people, or how they choose
information. Patient F explained his view on this as follows:
I don’t believe the things I see on the Internet. I only look at it. I’ll look. Yeah. Well, I look online. I just want to take a peek and then I can make comparisons. Yeah. That’s
15對啊那個網路上只是做參考而已啊⋯⋯加減看一下而已啊，並不是說很認真的在看待這個事情
about it (F 08:25 Stage 1)16
{Male | 41 y.o. | NPC stage 4 | under treatment}
Another patient, patient J, would look at all the information he found without
special selection. What is worth mentioning is that almost all the patients that we
interacted with reported they would not discuss information that they had doubts or
questions about with their doctors.
In this part we divided information-seeking behavior into eight subcategories.
These subcategories illustrate differences in information-seeking behavior exhibited
by the participants. It is assumed that this variation can be explained by demographic
characteristic differences such as age and gender. Younger participants used Internet
more frequently and extensively in comparison to older ones, and female participants
showed more active behavior in information acquisition than males.
CATEGORY 2: Attitude and psychological state
The author believes that the patients or the patients’ family members who agreed
to be interviewed were relatively positive in general in their attitude towards the
disease – the majority of the interviewees described themselves as “optimists” or
16我不會去信網路上的東西啊，我只是看，我會看啦，對呀，因為我會去看說，我也只 是說稍微看一下，然後說去多方比對，哦，大概是這個樣子，這樣子 (F 08:25 Stage 1)
“optimistic” during their narratives when were asked about their feelings. This
category is combined of three subcategories: attitude towards the disease,
psychological state, and attitude transformation.
1. Attitude towards the disease
Attitude towards the cancer diagnosis and treatment usually undergoes a few
stages from rejection to acceptance and action. Importance of maintaining the right
attitude can not be overestimated, as family member M shared his view on this very
clearly:
Everyone’s mentality is…how do I put this? It makes a difference whether you face an issue head-on or shy away from it. Your mentality is more vital than any kind of medicine or nutritional supplement(M 82:26)17
{Male | caregiver | 60 y.o. | throat cancer stage 1, lymphoma stage 3 | under treatment}
Two other patients, A and G, were very similar in their attitude towards the disease:
What I want to say is, whatever the situation, just live out a normal life (A 38:38)18 {Male | 56 y.o. | oral cancer stage 0-1| follow-up}
I try my hardest to see myself as a normal person. I’m just unemployed (F 19:52 Stage 1)19
{Male | 41 y.o. | NPC stage 4 | under treatment}
17因為每一個人的精神上的一個怎麼講，就是你去面對一個事情你有去面對事情跟你畏畏縮縮 的時候效果是不一樣的，比你吃什麼藥比什麼營養品都還重要 (M 82:26)
18⋯⋯我就想說，反正，就正常過日子 (A 38:38)
The attitude of patients A and F is remarkably identical to their behavior in
information search. Both of these patients were convinced that “the more you know
the more you worry” and adopted a strategy of information avoidance to a larger or
lesser extent.
In our study some patients (C, E, G, H) met the diagnosis very unemotionally,
did not have an emotional struggle with acceptance, and did not experience such
negative feelings as fear very much. It was common for these patients to respond in a
manner stated below:
It happened. It is what it is (C 11:47)20
{Male | 48 y.o. | oral cancer stage 0| follow-up}
During the interview it became clear why they have this attitude. There were two
reasons: either they had bad habits during their lifetime or a family history of cancer.
You know how you became like this. You brought it on yourself. It’s your own fault for smoking or eating betel nut. Yeah. You reap what you sow. Had you not taken up these bad habits, the chances of you getting sick would have been lower (E 48:24)21
{Male | 58 y.o. | oral cancer stage 0| follow-up}
I felt nothing even though he said my condition was in its advanced stages. I saw my condition as a minor illness. This is something I had to go through. It is related to my family (H 27:19)22
20阿碰到就碰到了(C 11:47)
21怎麼來就知道了，你自己找來的，誰叫你抽煙、誰叫你吃檳榔，嘿啊，你自己找來的，你沒有 這些壞習慣的話，要得的機會就比較少啦⋯⋯(E 48:24)
{Male | 60 y.o. | tonsil cancer stage 4| follow-up}
The author can detect commonalities between these patients in their information
seeking. They usually did not ask doctors any questions, did not discuss questions
during their visits to doctors or they mentioned squandering national resources during
our interviews. The author presumes these four patients have some sort of guilt that
prevents them from active information seeking behavior in the hospital. Other patients
who were diagnosed with cancer despite leading healthy lifestyles and with no
records of cancer in their families had one question in the mind - “why me?”:
Yes, frankly speaking, I, I, after I heard this I was very surprised, why me ah (D 17:42)23
{Male | 71 y.o. | tonsil cancer stage 2 | follow-up}
2. Psychological state
As to the psychological state, most of the respondents were scared, shocked and
lost after receiving the diagnosis. Nevertheless, the anxiety level was different
throughout the cancer journey for the patients and the family members with the
highest levels of anxiety in the pre-treatment and after-treatment periods. Patients had
22他跟我講末期，我一點感覺都沒有。我把它當成小病看。因為這個是有過程的，這是與我家族 有關 (H 27:19)
23 (D 17:42)
different strategies for lessening anxiety and stress: watching television (F), coming to
different strategies for lessening anxiety and stress: watching television (F), coming to