A qualitative exploration of participant perceptions, opinions and experiences of Trichotillomania

Trichotillomania (TTM) is a poorly understood disorder with no consensus on aetiology or epidemiology. TTM is often overlooked due to high rates of comorbidity with other disorders and is difficult to treat, often with a poor prognosis. The primary aim of this study is to explore the opinions, perceptions and experiences of people with TTM. Study objectives include identifying participant treatment preferences to potentially inform an intervention and to consider implications for future development and delivery of support for people with TTM.

An internationally-inclusive and geographically diverse sample was utilised as TTM occurs across the world, and incorporating an international approach aimed to generate new insights. The study employed a generic qualitative approach, with thematic analysis being used to analyse data from 20 asynchronous email interviews and 10 blog posts. The asynchronous email interview sample comprised 7 male and 13 female participants from 15 different countries.

Findings revealed a cycle of TTM, key themes and sub-themes emerged relating to negative thoughts and emotions, secrecy, non-disclosure, embarrassment, avoidances, perceived stigma and fear of judgement. Coexisting physical and psychological health implications were reported, alongside persistent and extensive effects and impairments across all aspects of life, including academic life, work life, relationships, self-identity and lost opportunities. Participants described engaging in permission-giving behaviours to gain control over TTM and outlined concealment as a method of coping. Blog post data reinforced email interview themes relating to secrecy, shame and stigma. Blog post data also revealed new themes: acceptance and societal view of beauty. Participants experienced barriers to seeking treatment, a lack of training and lapse in duty of care from their primary healthcare providers was noted. Email interview participants clearly detailed their ideal TTM treatment which may be used to inform development of a future intervention, with highlights to the importance of therapeutic alliance.

Findings are discussed in relation to relevant theory and applied to relevant models. The severe and far-reaching impairments in all areas of life coupled with the coexisting health implications further signifies that TTM can be a life impacting disorder for which there is no cure or effective treatment protocol.