Symptom management experiences of Chinese individuals with Crohn's disease: A longitudinal descriptive qualitative study

Abstract

Individuals diagnosed with Crohn's disease, a chronic lifelong condition, experience a dynamic or fluctuating process of developing symptom management behavior. However, less clear is how these individuals respond to and manage their symptoms over time. The aim of this study was to longitudinally explore the symptom management experiences of individuals with Crohn's disease in China. A longitudinal qualitative design was used. Eighteen individuals with newly diagnosed Crohn's disease were purposely selected. Semi‐structured interviews were conducted on four occasions over a 12‐month period. Interviews at each time point were transcribed and coded using conventional content analysis. Afterward, data analyses of each time point were compared longitudinally to form a holistic understanding. Three themes and eight subthemes emerged from the analysis: (1) disclosing symptoms strategically: voluntary disclosure, reluctance to disclose, no need to disclose; (2) decreasing vigilance in symptom prevention: preventing symptoms stringently, preventing symptoms discriminatively, preventing symptoms with decreased diligence; and (3) increasing autonomy in symptom treatment: actively seeking medical advice, self‐treatment and self‐observation. The participants were inclined to keep symptoms hidden from relatives and friends and showed a downward trend in actively disclosing physical discomfort to medical staff within the course of 1 year. The participants' attention to symptom prevention declined, but the enthusiasm and independence to eliminate symptoms on their own increased over time. Nurses could implement targeted interventions according to the characteristics of different periods to assist individuals with Crohn's disease in managing symptoms effectively, reducing symptom burden and improving their quality of life.