Reasons for discontinuing active participation on the internet forum tinnitus talk: Mixed methods citizen science study

Abstract

Background: Tinnitus Talk is a nonprofit online self-help forum. Asking inactive users about their reasons for discontinued usage of health-related online platforms such as Tinnitus Talk is important for quality assurance. Objective: The aim of this study was to explore reasons for discontinued use of Tinnitus Talk, and their associations to the perceptions of Tinnitus Talk and the age of users who ceased logging on to the platform. Methods: Initially, 13,745 users that did not use Tinnitus Talk within the previous 2 months were contacted and the response rate was 20.47% (n=2814). After dataset filtering, a total of 2172 past members of Tinnitus Talk were included in the analyses. Nine predefined reasons for discontinued usage of Tinnitus Talk were included in the survey as well as one open question. Moreover, there were 14 predefined questions focusing on perception of Tinnitus Talk (usefulness, content, community, and quality of members' posts). Mixed methods analyses were performed. Frequencies and correlation coefficients were calculated for quantitative data, and grounded theory methodology was utilized for exploration of the qualitative data. Results: Quantitative analysis revealed reasons for discontinued use of Tinnitus Talk as well as associations of these reasons with perceptions of Tinnitus Talk and age. Among the eight predefined reasons for discontinued use of Tinnitus Talk, the most frequently reported was not finding the information they were looking for (451/2695, 16.7%). Overall, the highest rated perception of Tinnitus Talk was content-related ease of understanding (mean 3.9, SD 0.64). A high number (nearly 40%) of participants provided additional free text explaining why they discontinued use. Qualitative analyses identified a total of 1654 specific reasons, more than 93% of which (n=1544) could be inductively coded. The coding system consisted of 33 thematically labeled codes clustered into 10 categories. The most frequent additional reason for discontinuing use was thinking that there is no cure or help for tinnitus symptoms (375/1544, 24.3%). Significant correlations (P