Experiences of Chinese patients with Crohn’s disease in the self-administration of nasogastric feeding: A descriptive qualitative study

Abstract

Background Despite the increasing number of Crohn’s disease patients self-administering nasogastric feeding as enteral nutrition support therapy, no studies have reported the experiences of self-administering nasogastric feeding from the perspective of these patients. Objectives To explore the initial trigger factors for the self-administration of nasogastric feeding by Crohn’s disease patients and to understand the experiences of self-administration of nasogastric feeding, its effects on various aspects of life and work, and relevant challenges and coping mechanisms encountered during this therapy in order to improve the understanding of this group of patients among medical staff and the public. Design This study adopted a descriptive qualitative method. Crohn’s disease patients from several tertiary hospitals in Hangzhou, Zhejiang, were recruited to participate through purposive sampling combined with maximum variation and the snowballing technique. Data were collected using semi-structured interviews and analyzed using the conventional content analysis method. Results A total of 11 Crohn’s disease patients were interviewed. Four themes and eight subthemes emerged from the analysis: rejecting the self-administration of nasogastric feeding (being afraid of inserting the nasogastric tube, having concerns about nasogastric feeding), accepting the reality of nasogastric feeding (health being the most important, followed by having sources of support), nasogastric feeding as a double-edged sword (the disturbances and efficacies of nasogastric feeding), and nasogastric feeding as a part of life (becoming accustomed to tube insertion and taking nasogastric feeding for granted). Conclusions Apart from suffering from physical discomfort, diet and body image disturbances, and inconveniences in daily life, Crohn’s disease patients who self-administered nasogastric feeding faced many psychological challenges. Many of these patients eventually adjusted to a life with nasogastric feeding, but not everyone achieved this state. Therefore, health care providers, including physicians and nurses, and the general public should collaborate to help these patients adapt to their “new lives” as soon as possible.