The Illness Experience Of Patients Living With Crohn Disease: A Qualitative Study

Objective The purpose of this study was to explore the illness experience of patients living with Crohn disease and to construct an interpretive understanding of the experience from the perspective of patients diagnosed with Crohn disease, so as to understand how they perceive the fact of suffering from Crohn disease and live a life with chronic illness, identify the underlying meaning of their perceptions and behaviours, and reveal their main concern and the basic process of how they resolve their main concern. The findings will provide a basis for health care providers to offer high quality health care service which meets patients’ needs.Methods A constructivist grounded theory approach was used. Purposive sampling and theoretical sampling were adopted to recruit participants.30 patients with Crohn disease were recruited from outpatient departments and inpatient departments of several hospitals and communities in four cities:Hangzhou, Nanjing, Guangzhou, and Wuhan. Face-to-face one-to-one in-depth interviews were conducted with these participants and were tape-recorded. As the main source of data, interviews were transcribed verbatim. Other forms of data included participant observation, textual data, media reports, and extant literature. Data analysis followed the constructivist grounded theory process wherein the researcher use strategies of initial, focused, and theoretical coding, constant comparative method, writing, sorting, and integrating memos. The relationships between categories were constructed and the core category was developed.Results ’Regaining normality’ was identified as the core category of this study, and four categories were identified. These were "comparing", "struggling", "reflecting" and "realizing" The category of comparing refers to identifying the similarities and differences or evaluating superiority and inferiority regarding the similar things between patients with Crohn disease and healthy people or people who are in a similar situation as patients or in a more unfortunate situation than patients. The category of struggling reflects the dilemma experience of identifying and informing others a patient identity for patients with Crohn disease. The category of reflecting refers to a consideration of values and life attitudes that patients held before and after the onset of Crohn disease. The category of realizing reflects the deep comprehension about the meaning of suffering from Crohn disease.Conclusion This research constructs an interpretive understanding of the illness experience of patients living with Crohn disease, discovers the basic social psychological process of "Regaining normality". The finding provides a basis for future disease management of Crohn disease.