Using Participatory Action Research to Redirect Tinnitus Treatment and Research—An Interview Study

Abstract

Background: Chronic bothersome tinnitus is a prevalent tinnitus subtype placing a high burden on affected individuals, economies, and healthcare systems. Patient and professional perspectives seem to be partly misaligned on how to improve tinnitus research and treatments in the future. This qualitative interview study was aimed at exploring, comparing, and stipulating the perspectives of different tinnitus stakeholder groups on ways of redirecting research and treatments to reduce patients’ suffering while accounting for challenges within these practices. Methods: This study used the participatory action research approach to facilitate the stakeholder involvement. Semi-structured online interviews including five participants (two tinnitus patients, two tinnitus researchers and medical specialists, one general practitioner) were conducted. Inductive grounded theory and the constant comparative method were used for data analysis. Results: Four categories for suggested research adaptations ((I) ethical patient involvement; (II) prioritising cure versus coping research; (III) funding; (IV) ethical publication) and six categories for suggested treatment adaptations ((I) ethical professional support; (II) patient involvement; (III) interdisciplinarity; (IV) professional tinnitus education; (V) clinical treatment guidelines; (VI) psychological treatment) were identified. Participants held partly similar priorities such as increasing pathophysiological and cure research. Differences between participants included, for instance, patients aiming for increasing patient involvement in tinnitus research and treatments compared to professionals arguing that the excessive focus on patients’ conditions might reduce the patients’ chances of habituating to their symptoms. Conclusions: Four action redirections for improving tinnitus research and treatment practices were defined: (I) facilitating communication between and within stakeholder groups, (II) increasing the reflective use of patient involvement, (III) increasing interdisciplinarity, and (IV) reducing barriers to receiving psychological treatment.