Findings and ethical considerations from a thematic analysis of threads within tinnitus online support groups

PurposeTinnitus is the perception of noise without a corresponding external stimulus. Current management typically aims to moderate associated psychosocial stressors and allow sufferers to retain an adequate quality of life. With the increasing recognition of the internet as a repository for health advice, information, and support, the online support group has become a popular coping strategy for those living with chronic conditions like tinnitus. Patients find that communicating with each other, providing encouragement, and sharing information in the absence of physical and temporal boundaries, is an invaluable way of managing their condition. The purpose of this study was to explore the potential positive and negative consequences of participating in online support groups for tinnitus.MethodDiscussion forum threads were collated from across four public online support group websites. All threads were initiated between February and April 2016. Text from these threads were coded by three separate analysts using both inductive and deductive thematic analysis, until data saturation was reached.ResultsAnalysis of 75 threads (641 individual posts) found nine independent themes pertaining to aspects of participation in tinnitus online support groups. The results revealed that using the forums allowed users to exchange knowledge and experiences, express complex emotions, profit from a network of support, and engage in every-day conversation away from the burden of their tinnitus. However, some experiences appeared to be compromised by negative messages, limited communication, and informational issues such as conflicting advice or information overload.ConclusionsThis study represents the first research into discussion forums in tinnitus online support groups. A non-intrusive (passive) analysis method was used, whereby messages comprising the data set were retrieved without direct interaction with the discussion forum. Individuals and the community of tinnitus online support groups are deemed to be at low risk from potential harm in this study. Most tinnitus patients likely benefit from accessing online support groups, e.g. they discover they are not alone, they find new coping strategies. However, for those who are particularly vulnerable or prone to psychological stress accessing these groups could be detrimental