Illness Experience of Patients with Chronic Hepatitis C Participating in Clinical Trials

December 2016 Volume 7, Issue 6, Pages 394–399 Osong Public Health and Research

Illness Experience of Patients with Chronic Hepatitis C Participating in Clinical Trials
Hoo-Jeung Cho, Euna Park

DOI: http://dx.doi.org/10.1016/j.phrp.2016.11.001

Abstract

Objectives
To understand the illness experience of patients with chronic hepatitis C participating in clinical trials in the sociocultural context of Korea in an in-depth and comprehensive manner.

Methods
A focused ethnography approach was used to discover the pattern of illness experience of patients with chronic hepatitis C in the cultural background of Korea. Interviews were conducted with 11 patients with chronic hepatitis C participating in clinical trials and the collected data were analyzed with the domain analysis, taxonomical analysis, componential analysis, and theme analysis proposed by Spradley.

Results
With the cultural theme of “less-known illness, less-familiar illness,” four categories were derived: “my illness discovered by accident,” “shaken life,” “scary but inevitable treatment method,” and “precious life that can't be wasted,” along with 12 properties

Conclusion
Public campaigns or education programs are needed to meet the needs for information on the disease for patients with chronic hepatitis C participating in clinical trials and help the general public acquire knowledge or change view on this disease.

Discussion Only
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This study employed a focused ethnography approach to derive psychological change and cultural significance experienced by patients with hepatitis C, which is not well-known in the sociocultural background of Korea, while they were participating in clinical trials.

From this study, the cultural theme of “less-known illness, less-familiar illness” was derived in the cultural domain of the illness experience of Korean patients with chronic hepatitis C. With this theme, four categories were derived: “my illness discovered by accident,” “shaken life,” “scary but inevitable treatment method,” and “precious life that can't be wasted,” along with the semantic structure of 12 properties. Each category is discussed in the following sections.

In the first category of “my illness discovered by accident,” the major experience related to the diagnosis of patients was found to include “uncertainty” and “regret.” In addition, they experienced “a sense of stigma” from people around them due to the lack of awareness of hepatitis C. Hepatitis C is more chronic than hepatitis B (5% vs. 50–80%) [23] and has a long process of development without specific symptoms [24]. Therefore, the diagnosis of hepatitis C often causes frustration to the patients, because they usually are diagnosed during their regular check-ups without any symptoms for a long time. In Korea, the combination treatment of peginterferon and ribavirin had been a standard treatment for hepatitis C until the revision of the treatment guideline by the Korean Association for the Study of the Liver in 2015 [25]. However, the combination treatment had many side effects and required a longer treatment period with a lower cure rate. As a result, those who were diagnosed with chronic hepatitis C felt uncertain due to the recognition that it is not easy to be treated, and regretted for their behaviors in the past. In addition, a social stigma was created because of the lack of knowledge on the transmission routes of hepatitis C by the general public. Therefore, an education program needs to be developed for patients or the general public on the causes, transmission routes, and treatment methods of hepatitis C.

Uncertainty over the incurable disease

I heard that there would be no cure at all, and I need to sleep well, try not to gain weight and not to be picky about food. [Participant 1]

In the second category of “shaken life,” patients are unhappy with the medical staff who did not properly explain how to manage the disease after the diagnosis of chronic hepatitis C, and afraid that the disease may rapidly develop into cirrhosis or liver cancer. While they are tempted to take the food that people say is beneficial for the liver, they are also cautious of the food because it can reduce the detoxicating function of the liver. The fact that the participants of this study were not satisfied with the explanation from the medical staff contrasts with the results reported by Sun and Ju [20], who noted that participants considered physicians and nurses their information sources for chronic hepatitis C by 72.6% and 7.1%, respectively. This indicates that although physicians explain patients about chronic hepatitis C, they could not explain enough for patients to be satisfied. Frazer et al [26] also revealed that the level of knowledge on hepatitis C of nurses is lower than that on other infectious diseases. Therefore, education for hepatitis C customized to nurses needs to be provided to the nurses who are in contact with patients with hepatitis C by developing a program based on the knowledge level of nurses on hepatitis C.

Disappointment to medical staff who did not explain properly

To be honest, I was responsible for not doing my own research, but the physicians who treated me did not explain properly. If they explained the process and development of my disease, I could know how serious my disease was. They just showed me the chart in English, and when I asked something, they only said it would be OK. I thought I was OK because the physicians told me that I would be OK. [Participant 9]

In the third category of “scary but inevitable treatment method,” patients were afraid of participating in clinical trials in many aspects and felt frustrated due to the side effect of the existing standard treatments, but they became hopeful with the encouragement by people around them and the results of clinical trials. Although the treatment guideline for chronic hepatitis C was revised in 2015 and took effect partly from 2016, patients are still concerned about the side effects because the new guideline has not been proved on a long-term basis. They, however, made their mind to participate because they did not have other options. Therefore, a program that can reduce the uneasiness of patients by understanding their psychological mechanism needs to be run before they participate in clinical trials.

Frustration from the side effects of the existing standard treatments

When I first got the injection, I thought I would die. I couldn't do my work because I felt like my body was burning. I was totally exhausted and almost dead because of the terrible fever overnight. The next morning, pain was gone, but I didn't have appetite. I lost 8 kg within a month. [Participant 7]

In the beginning, I was treated with the Interferon and Ribavirin combination. It was a 48-week treatment course for 1 year, and I still clearly remember that time. I had fever, body ache, including my four limbs, headache, shortness of breath, which made my walking hard, thinned hairs, lost weight, retching, insomnia and depression. I endured all of those for my treatment. [Participant 9]

In the fourth category of “precious life that can't be wasted,” they wanted to be reborn by thoroughly ensuring medication compliance and to change the recognition on the stigma in which people link the cause of hepatitis C with the abuse of narcotic injection. Considering the previous studies suggesting that medication compliance in chronic diseases is better when the level of knowledge of patients is higher [27, 28], an effort needs to be made to enhance their knowledge on chronic hepatitis C. To this end, the need of patients for the domain they want to know should be first identified and then a systematic education program should be developed to address such need.

Expectation for the removal of stigma

Once I am cured, I can proudly say that I have been suffering from hepatitis C and finally overcome all the difficulties from the disease. [Participant 9]

It doesn't have to be badly recognized. Although it is only infected through blood, people are a little hesitant about being near me. I want to be a leader in changing such recognition. [Participant 9]

The results of this study will be the basic data to develop an education program to improve the knowledge of the general public or patients with chronic hepatitis C on hepatitis C and prevent the transmission of the disease.

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