Web-based discussion forums reveal the person-centered relevance and importance of tinnitus

Prog Brain Res. 2021:260:205-221. doi: 10.1016/bs.pbr.2020.12.001. Epub 2021 Jan 16.

Abstract

An increasing number of health researchers are recognizing the benefits of crowdsourcing. Web-based discussion forums are well suited for collecting qualitative research data with tinnitus participants and forum posts can be evaluated using thematic analysis. The present study reports an innovative use of such qualitative data contributed by a group of 148 people with tinnitus and tinnitus professionals through the crowdsourcing platform Tinnitus Talk. While the primary research question was focused on defining symptom concepts, discussions were broad-ranging and extended far beyond this topic. Thematic analysis of the discussion conducted by two analysts identified three novel emerging themes and these were not pre-planned according to the moderator's script. These were (i) the lived experience of tinnitus, (ii) perspectives on interventions for tinnitus, and (iii) the experience of participating in a web discussion forum. These unexpected themes contribute to a richer and more in-depth understanding of tinnitus seen through the eyes of those who experience it on a daily basis. Findings are important since spontaneous themes presumably reflect issues that are of personal relevance and importance to the participants. They therefore give insights into future research directions and have implications for patient-centered counseling strategies that could be effective in clinic.

Keywords: Crowdsourcing; Diversity; Lived experience; Patient-centered; Qualitative research.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Humans
  • Internet
  • Qualitative Research
  • Tinnitus* / therapy