Empowerment, Self-Management and Illness Perception of Users of an Online Self-Help Platform for Tinnitus: A Cross-Sectional Study.

Background

Tinnitus is a common and potentially distressing phenomenon for which no broadly effective curative treatment exists. Self-management skills and empowerment are crucial for coping with chronic conditions, but empirical studies investigating the association of these on individuals burdened by tinnitus are scarce. The primary aim of this cross-sectional study was to investigate the association between the use of an online self-help platform for people with tinnitus and self-perceptions of empowerment, self-management skills, and the cognitive and emotional representations of tinnitus.

Methods

One hundred and fifty-two adult participants were recruited from an online self-help platform for people with tinnitus, resulting in a self-selected convenience sample. Self-management skills were assessed using the Patient Assessment of Chronic Illness Care (PACIC) and the Partners in Health Questionnaire. The cognitive and emotional representations of tinnitus were measured with the Illness Perception Questionnaire. Finally, the Empowering Processes and Outcomes Questionnaire was used to evaluate empowerment associated with engagement in the self-help platform. The type and frequency of user activity on the self-help platform were used to explore the relationship between the nature of contributions to the platform and the measured outcomes.

Results

The key findings include: (1) The representations of tinnitus were negatively related to their ability to self-manage the condition. (2) The duration of tinnitus did not correlate with improved self-management skills. (3) Comparing those who visited a healthcare provider for their tinnitus with those who did not, we found that treatment adherence was higher among participants with clinical visits. (4) Participants in this study scored lower on all aspects of self-management skills (as measured by the PACIC) compared to patients using primary healthcare services. (5) Participants who actively contributed to the self-help platform by posting scored higher in two empowering processes: helping others and sharing experiences.

Conclusions

The present findings suggest that tinnitus self-management skills are independent of tinnitus duration, whereas those skills correlate negatively with illness perception. Further, clinical visits are associated with higher treatment adherence, and active self-help platform use increases feelings related to helping others and shared experiences. Taken together, these results highlight the need for fostering self-management skills and structured peer-to-peer support programs. Because this was a self-selected convenience sample of users of an online tinnitus self-help platform, the findings should be interpreted in light of this recruitment context and not generalized to the broader tinnitus population.