BACKGROUND: Patient participation is associated with satisfaction and improved health-related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area.

OBJECTIVE: To gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway.

METHODS: Semi-structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19-80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit.

RESULTS: Five generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff 'invited' patients in decision making.

DISCUSSION: This study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation.

CONCLUSIONS: Endoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors.