Purpose : This study was a qualitative research to explore and understand the disease management experiences in patients with hepatocellular carcinoma receiving transarterial chemoembolization(TACE) and to develop a substantive theory using the grounded theory method.
Method : Participants were 17 patients with who were hepatocellular carcinoma receiving TACE. The data were collected through in-depth individual interviews. The information was analyzed by the grounded theory of Corbin and Strauss(2015). Result : Participants'' responses were analyzed by the open coding method, from which 104 concepts, 29 sub-categories and 15 categories were obtained. The findings of this study can be summarized in the following.
1. The causal conditions of disease management experience of patients with hepatocellular carcinoma receiving TACE were ‘Uncomfortable body and mind’ and ‘Ruined daily life’. The central phenomenon turned out to be ‘Living life treading on a tightrope’. The context influencing the central phenomenon was ‘The perspective of reality awareness’, and the intervention conditions were ‘Supportive system’, ‘Accessibility to health management system’, and ‘Self-directedness’. The results of using action/interaction strategies including ‘Searching’, ‘Matching’, ‘Managing strategic information’, ‘Comparing’, and ‘Converting’ were ‘Finding out the key to life’, and ‘Living with a bent key’.
2. The processes of disease management experience of patients with hepatocellular carcinoma receiving TACE were ‘The stage of awareness, ‘The stage of acceptance’, ‘The stage of adjustment’, and ‘The stage of settlement’. It was confirmed that, in ‘The stage of acceptance’, ‘The stage of adjustment’, and ‘The stage of settlement’, each stage would overlap with one another or retrogress rather than show a sequential process.
3. Of the processes of disease management experience of patients with hepatocellular carcinoma receiving TACE, ‘Searching for my own key’ was used as the core category in deriving the substantive theory of ‘Balanced adjustment’, and the adaptation type consisted of a leading type, a compliance type, a conflict type, and an avoidance type.
4. In sum, the participants had to rely on repetitive TACE as they could not receive an operation due to the progressive hepatocellular carcinoma, and thus they were selecting their own strategy and adapting to their long-term disease management process. Based on this situation, the substantive theory of ‘Balanced adjustment’ was derived. Through this theory, this study provided a new perspective that patients with hepatocellular carcinoma receiving TACE would try to maintain their social status and role, and dynamically manage the disease and life, not just depending on the health management specialists in curing the disease.