Experiences among patients with short bowel syndrome and their caregivers: Insights from targeted forums

Abstract

Background

Short bowel syndrome (SBS) is a rare and severe disease that significantly impacts patients' quality of life, as they experience malnutrition, diarrhea, weight loss, and frequently require parenteral nutrition (PN). However, there are few large sample qualitative analyses examining the biopsychosocial impact of SBS. In this study, we conducted social netnography of online posts to examine the perspectives, experiences, and concerns among patients with SBS and their caregivers.

Methods

We extracted 20,221 publicly available posts from SBS-specific sites and other e-forums between 1/1/2010-1/11/2021. After applying SBS keyword filters (e.g., short bowel, short gut, SBS) and manual review, we identified 316 relevant posts. We used an open coding technique to qualitatively analyze the posts and visualized the themes/subthemes using an empathy map.

Results

Overall, 70.6% and 14.9% of posts were made by caregivers and patients with SBS, respectively; the source was unclear for 14.6% of posts. People commonly posted about their emotions related to SBS. They also sought and shared information on how to manage SBS symptoms, navigate treatment options, and improve quality of life. They also discussed their challenges, such as financial struggles, finding day care facilities, coordinating with healthcare providers, and managing PN-related infections, among many other issues.

Conclusion

Our findings demonstrate the marked impact of SBS on the biopsychosocial wellbeing of patients and their caregivers. Given their significant challenges, multidisciplinary teams that include clinicians, dieticians, social workers, nurse case managers, and mental health professionals are needed to support people with SBS and their families.