“I found hundreds of other people…but I still wasn’t believed” – An exploratory study on lived experiences of antipsychotic withdrawal

BackgroundAntipsychotic withdrawal refers to a diverse range of symptoms and experiences, which can occur secondary to the cessation or reduction in dose of an antipsychotic drug. This study addresses the shortage of qualitative research that investigates users’ hopes, expectations, and feelings throughout the process, as well as limited research on people prescribed antipsychotics for off-license indications.MethodsNine people recruited from online user-led groups and forums relevant to antipsychotic withdrawal took part in semi-structured interviews via online video. Four of the participants were prescribed antipsychotics for off-licence indications. Reflexive thematic analysis was used to identify themes.ResultsThe themes were: balancing priorities, withdrawal journey, invalidation of experiences and peer community. Findings show the extent of symptoms that can be experienced secondary to antipsychotic discontinuation, they highlight the wider individual context that antipsychotics impact, and the meaningful reasoning behind withdrawal decisions.DiscussionThis study highlights the importance of developing clinical guidelines for antipsychotic withdrawal to facilitate service-user choice and minimize harms when making decisions about discontinuation. These findings endorse a shift towards full disclosure on the risk of antipsychotic withdrawal effects at the point of starting antipsychotics thus allowing service-users to make informed choices.