"It's a tool, it's got hardships": a qualitative study of patient experience of colonoscopy and implications for trauma-informed care.

Background: About half of the patients having colonoscopies experience procedure-related anxiety and emotional distress, which are associated with negative outcomes, including pain, higher sedation needs, longer procedure times, and avoidance of future care. Objectives: To improve procedure quality, we sought to understand from the patient's perspective the emotional and psychological aspects of undergoing a colonoscopy and recommendations for improving care. Design: Qualitative interview study. Methods: We conducted semi-structured interviews with patients after colonoscopy. Questions were informed by the theoretical frame of trauma-informed care and fieldwork and collaborative discussions with endoscopists, multidisciplinary staff, and patients. Patients were recruited through purposive sampling to reflect a range of indications for colonoscopy, demographics, and health backgrounds. Interviews and data analysis were conducted in overlapping phases to ensure a diversity of perspectives. Thematic analysis was used to identify shared patterns across the data. Results: Nine patients completed interviews, and analysis generated the central dialectic "it's a tool, it's got hardships," reflecting a shared belief that colonoscopies are both stressful and important to one's health. Within this uniting concept, we identified themes of patient, provider, and process factors that have the potential to reduce or promote distress. Subthemes related to patients' past experiences/expectations, coping, and access to support; providers' communication and behavior; and process factors including prep/wait times, sedation and anesthesia, and team-based care. Factors that buffered against distress included perceived trust, transparency, and confidence; positive expectations rooted in prior healthcare experiences; flexible coping and feeling supported. Factors that contributed to increased vulnerability included having a minoritized identity, a history of past medical trauma, and uncertainty in communication and the colonoscopy process. Conclusion: Efforts to improve the colonoscopy experience should continue to address the interplay of these complex factors. Given that identification of those at the highest risk for distress may not always be possible, we recommend a universal trauma-informed approach and provide specific suggestions for implementation in endoscopy.