Conclusion

The purpose of this study was to investigate the phenomenon of HNC cancer

patients’ information search and needs in detail rather than in a general way; to raise

questions instead of proposing definite answers; to understand possible underlying

reasons behind the issues and not only stating the issues. An in-depth understanding

of the research problem was central to this study for further application regarding

service design in relation to the ZOHUE platform. Specifically, the average length of

each interview was one to one and a half hour, there were two stages of interviews,

and additional interviews with healthcare providers were performed. Out of all the

possible research methods in qualitative research, a framework content analysis for

identifying patterns and categories was chosen as being the most appropriate for the

interview data analysis with partially predefined themes.

This study’s research findings can be summarized into the three main themes:

information seeking behavior, information sources, and information needs.

Information seeking behavior significantly differed among the participants depending

on age and gender as well as educational attainment. Also, the participants adopted

different coping attitudes towards the disease: some of them showed active

participation in their treatment, while others chose to avoid involvement. A linkage

between information and anxiety was identified – one category of the patients

preferred information avoidance and another one chose active information acquisition

in order to deal with anxious psychological state. It is possible that these different

strategies can be associated with the stage of the cancer journey, with higher level of

nervousness during and just after treatment.

Some of the study’s results correspond with the findings in literature review. A

qualitative study by Leydon et. al (2000) identified three possible reasons associated

with information avoidance described as such themes as faith in doctors, hope, and

charity. These three themes appeared in the interviews with the participants of this

study as well. In addition, in relation to male patients’ attitude towards disease

management we found that 2 patinets, A and F, tended to pretedn that they live

normal life. The same finding was stated in one research as well: “Women patients

often valued the knowledge and experience of other cancer patients more than

medical information, and this personal experience often proved invaluable with

treatment decision making. By contrast, the men rarely spoke of relying on the

experience of other patients; once they left the outpatient clinic or treatment

room they preferred a policy of “life as normal” in which cancer could be forgotten

(at least superficially).” (Leydon et. al 2000, p.911).

In another study by Shea-Budgell et. al (2014) it was found that only 38% of the

patients discussed online information with their doctors. In this thesis number of the

patients discussing questions with medical providers was also relatively low – only

one forth of the participants.

As suggested by Rutten et al. (2016), patients’ reliance on healthcare specialists

does not diminish despite the rise of the Internet. This research supports the fact that

hospital and doctors remain one of the major informational sources for both HNC

patients and caregivers of patients at the NTU Hospital. Trustworthiness of online

information is questioned and a few studies emphasized that the hospital assistance is

necessary. Some of the study’s participants referred to online information but the

degree of trust was still relatively low, they would instead actively consult other

patients and caregivers’ experience. In fact, this is one of the major findings of this

study and it was discovered that communication opportunities and channels between

patients’ are insufficient.

Treatment-related information is provided comprehensively compared to such

types of information such as nutrition and rehabilitation. The participants

demonstrated substantial need in nutrition-related information; other patients and

caregivers were described as the main source of this type of information. A need for

nutrition-related consultations was revealed during the interviews.

Rehabilitation-related information was not actively sought by all the patients, but was

still constituted as important need for one patient who encountered impaired physical

movements as a consequence of insufficient rehabilitation exercises. The majority of

the participants repeatedly postulated that they would like to know more about other

patients’ experiences particularly in relation to nutrition. Additionally, the medical

professionals’ perspective was taken into account and discussed in order to compare

with the patients’ and caregivers’ opinions and to have a more holistic understanding

of the research problems.

Methodologically, this study added value to the body of knowledge by applying

a qualitative research process. The number of qualitative research papers on this topic

is substantially lower in comparison to quantitative studies according to this study’s

literature review. It is one of the very few studies that are completed in a qualitative

manner in Taiwan, exploring a problem related to Taiwanese patients. Also, this

research is dedicated to only one type of cancer, HNC, and exclusively to the patients

of NTU Hospital, thus providing a greater in-depth understanding of the topic.

Furthermore, the research problem was explored not only from the perspective of the

patients and caregivers, but interviews and interaction with healthcare providers was

beneficial in understanding patients’ issues and information provision system of the

hospital.

The study has direct practical contribution since it was initiated with the purpose

of resolving a real practical problem － designing a ZOHUE online platform for

information acquisition and social interaction for cancer patients. After the first phase

of the interviews was completed a series of workshops was held in the CCDM

company for designing a possible interface and functions for the ZOHUE platform

during the period July 11^th to the middle of August 2016. All the transcripts were

printed out and analyzed during two consecutive workshop sessions by the author, the

advisor’s assistant, and the company’s researchers. The design thinking method of

analysis was employed, in particular three stages: problem definition, ideation, and

prototyping. Each patient’s transcript was interpreted and discussed by the workshop

participants as illustrated in Figure 5.1.

Figure 5.1 Interpretation of patient K’s interview content. Excerpt

In the following workshop all the information derived from interpretation was

divided into categories according to possible design principles for the platform, and

resulted in four major themes – systematic presentation of information that is easily

retrievable, disease management, mutual support between patients, and trusted source

of information (Figure 5.2).

Figure 5.2 Four major themes identified during the third workshop in CCDM

Eventually, a prototype of one function that addresses disease management was

designed and in future it is planned to invite the participants of the study for

evaluation and commenting.