[What it means for patients to have their illness experiences published in the Internet]

Aim of the study was to explore meaning and consequences for patients for having their illness experiences published in the internet. Patients who participated in the establishment of a research-based internet website on illness experiences were interviewed about their experiences of taking part in the project. 14 patients with diabetes and 29 patients with chronic pain participated in the follow-up. They were interviewed with an open narrative and semi-structured approach about their motives and experiences of taking part in the project and the impact of the publication on them. Interview transcripts were coded and aggregated in a computer-assisted thematic analysis. Patients unanimously evaluated their participation positively. Many of them reported that it had been an intense and relevant experience, which equalled an intervention. They conveyed that the special effort of the researchers to establish a trustful and caring relationship had proven of value and led to a high identification of the participants with the aims of the website.