P1055 Refusing Stoma-Forming Surgery: Preliminary Findings from an Interpretative Phenomenological Analysis of Patients with Inflammatory Bowel Disease

Background

Stoma-forming surgery (SFS) is often viewed as a last resort for managing severe Inflammatory Bowel Disease (IBD), encompassing Crohn’s Disease (CD) and Ulcerative Colitis (UC) (1). Despite its potential life-saving benefits, many patients refuse this intervention due to psychological, social, and cultural factors. While substantial research has explored the experiences of individuals living with a stoma, less is known about the perspectives of those who decline this procedure (2,3). This study investigates the decision-making process and lived experiences of IBD patients who refuse SFS. To explore the psychological, social, and contextual factors influencing IBD patients’ refusal of SFS and to understand how they navigate their disease while rejecting this treatment option.

Methods

Using Interpretative Phenomenological Analysis (IPA), semi-structured interviews were conducted with seven adult IBD patients (3 men, and 4 women) who declined SFS. Participants were recruited from a gastroenterology department and online forums. Interviews focused on their disease experience, decision-making processes, and perceptions of life with and without a stoma. Verbatim transcripts were analyzed to identify emergent themes.

Results

Preliminary analysis revealed four main themes:

1. Personal Perception: Fear of lifestyle changes, social stigma, and surgery; mixed feelings of acceptance and coping.

2. External Factors: Influences from healthcare professionals, diagnosis, and treatment processes.

3. Educational Gaps: Inadequate or improper information provided about SFS.

4. Hope: Optimism for disease remission and new treatment options.

A recurring observation was a tendency towards “magical thinking,” where patients avoided discussing SFS to deny its existence. Despite rejecting surgery, participants expressed ambivalence and ongoing struggles with their decision.

Conclusion

Patients’ refusal of SFS is multifaceted, influenced by personal biases, external circumstances, and a lack of tailored education. Addressing these concerns through comprehensive psychological support and patient-centered communication may improve decision-making and treatment outcomes for this vulnerable population.

References

1.Dibley L, Czuber-Dochan W, Wade T, Duncan J, Burch J, Warusavitarne J, Norton C, Artom M, O’Sullivan L, Verjee A, Cann D. Patient decision-making about emergency and planned stoma surgery for IBD: a qualitative exploration of patient and clinician perspectives. Inflammatory Bowel Diseases. 2018;18;24(2):235-46.

2.Zhang JE, Wong FK, Zheng MC. The preoperative reaction and decision-making process regarding colostomy surgery among Chinese rectal cancer patients. European Journal of Oncology Nursing. 2017;28:107-13.

3.Clark M, Chur-Hansen A, Mikocka-Walus A. Systematic review with meta-analysis: Current and emerging models of preoperative psychological preparation for individuals undergoing stoma surgery. Journal of Psychosomatic Research. 2023;168:111211.