Regaining normality: A grounded theory study of the illness experiences of Chinese patients living with Crohn's disease

Abstract

Background: Crohn's disease is a chronic condition causing inflammation of the lining of the digestive system. Individuals suffering from this illness encounter various challenges and problems, but studies investigating the illness experiences of patients with Crohn's disease in East Asian countries are scarce.

Objectives: The objective of this study was to explore the illness experiences of patients with Crohn's disease in China and construct an interpretive understanding of these experiences from the perspective of the patients.

Design: A constructivist grounded theory approach was used to develop a theoretical understanding of illness experiences.

Settings: This study included participants from the following four provincial capital cities in China: Hangzhou, Nanjing, Guangzhou, and Wuhan.

Participants: Purposive sampling and theoretical sampling were used to select Chinese patients living with Crohn's disease.

Method: Between February 2015 and January 2018, audio-recorded interviews were conducted. The data analysis included initial coding, focused coding, and theoretical coding using the constant comparative method and memo writing.

Results: Thirty-one participants were included in the study. "Regaining normality" was identified as the core category. The following four categories were conceptualized: comparing, struggling, reflecting, and realizing. Comparing refers to distinguishing the similarities and differences or evaluating the superiority and inferiority of similar things. Comparisons could occur between patients with Crohn's disease and healthy individuals or between patients and people in similar or more unfortunate situations. Struggling reflects the dilemmas experienced by patients with Crohn's disease in acknowledging their patient identity and informing others of this identity. Reflecting refers to the consideration of the values and life attitudes held by patients before and after the diagnosis of Crohn's disease. Realizing involves patients gaining a deeper understanding of the suffering associated with Crohn's disease after experiencing the illness.

Conclusion: This study offers an interpretive understanding of the illness experiences of patients with Crohn's disease. Regaining normality represents the basic social psychological process. Regaining normality is related to reassessing and reconstructing the self after receiving a Crohn's disease diagnosis. This paper provides new insight into patients' lives and describes the strategies patients use to cope with the challenges and problems caused by the illness. These study findings can be used to develop future complex interventions and studies.

Keywords: Crohn’s disease; Grounded theory; Illness experiences; Inflammatory bowel disease; Qualitative research.