Home-based enteral nutrition self-management challenges in young and middle-aged patients with Crohn's disease: a qualitative study.

Abstract

To explore the challenges faced by young and middle-aged patients with Crohn's disease (CD) in managing home enteral nutrition (HEN) and to identify strategies to improve their self-management and treatment adherence. A qualitative phenomenological study. The study was conducted at a comprehensive tertiary hospital in Jiangsu, China, with a focus on patients undergoing long-term HEN treatment for CD. 14 participants, aged 18-60 years, diagnosed with CD, and receiving HEN. Inclusion criteria required participants to be capable of clear self-expression and to provide voluntary consent. Exclusion criteria included cognitive impairment, mental illness or other major health conditions unrelated to CD. Data were collected through semistructured interviews, exploring participants' self-management challenges with HEN. 14 valid interviews were included for analysis. Two main themes were identified: subjective challenges, including psychological burden, self-management confidence and disease perception bias, and objective challenges, including social restrictions, economic burden and insufficient support systems. Young and middle-aged patients with CD face significant subjective and objective challenges in managing HEN, which impact their physical and psychological well-being. Targeted interventions are needed to address these difficulties and improve self-management support.