Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation

Abstract

Antipsychotic medications (AM) are the designated first‐line intervention for psychosis in international best‐practice guidelines and are prescribed for a range of other mental‐health problems. Relatively little is known about how people subjectively experience AMs and attempted discontinuation or about the role psycho‐social factors play in recovery outcomes. This research explores how people experience AMs, use psycho‐social strategies and, where relevant, manage discontinuation. An anonymous online survey was completed by 144 New Zealand adults who had ever taken oral AMs for any reason for more than 3 months. Seven in‐depth interviews were conducted to explore experiences of people who had discontinued AMs for over one year. In Study One, survey participants reported a range of diagnoses including schizophrenia spectrum disorders, bipolar disorder, and depression. Half described a primarily negative first prescription experience. Other treatment options were rarely offered at first prescription but were nevertheless used by many. Few people reported being well‐informed of the potential benefits and risks. Descriptions of taking AMs ranged from “life‐saver” and “useful tool” to “mixed bag” and “hell”. Most experienced both benefits and adverse effects. Most (79%) had contemplated stopping AMs, and 73% reported making at least one attempt, with variable preparations, methods and outcomes described. Hierarchical multiple regression suggested social support, active coping and avoidant coping were independently predictive of quality of life but current use of AMs was not. In Study Two, the interviewees revealed that maintaining wellbeing during and after withdrawal from AMs was primarily a function of coming to understand themselves and their needs, connecting with supports, and finding strategies that worked for them, which included accepting symptoms and signs of distress. Conclusions include that AMs can be experienced as crucial lifesavers, useful tools with drawbacks and/or destructive forces to endure or escape. Attempted discontinuation is common and some people succeed in their efforts to stop, although withdrawal can be risky and is often poorly supported. Multiple psycho‐social strategies are helpful additions or alternatives to AMs. Since quality of life is associated with coping and social support, treatment systems cannot rely solely on medication to produce positive outcomes for those who take AMs.