Using Open Questions to Understand 650 People's Experiences With Antipsychotic Drugs

Abstract

Studies of antipsychotic medication, which are increasingly prescribed for a broad range of problems and circumstances, rarely ask the people who take them to describe their experiences with the drugs. In this study, 650 people, from 29 countries, responded, in an online survey, to "Overall in my life antipsychotic medications have been _____?" and "Is there anything else you would like to say, or emphasise, about your experiences with antipsychotic drugs?" Of the total participants, 14.3% were categorized as reporting purely positive experiences, 27.9% had mixed experiences, and 57.7% reported only negative ones. Negative experiences were positively correlated with age. Thematic analysis identified 749 negative, 180 positive, and 53 mixed statements. The 2 positive themes were "symptom reduction" (14) and "sleep" (14), with the majority (153) unspecified. The 4 negative themes (besides "unspecified"-191) were: "adverse effects" (316), "interactions with prescriber" (169), "withdrawal/difficult to get off them" (62), and "ineffective" (11). The adverse effects included: weight gain, emotional numbing, cognitive dysfunction, sedation, akathisia, effects on relationships, and suicidality. "Interactions with prescriber" included lack of information about withdrawal effects, support, or discussion of alternatives. The only mixed theme was "short-term good, long-term bad" (28). Open questions can add to findings from methodologies focused on symptom reduction. Clinicians should pay more attention to the need for respectful and collaborative patient-prescriber relationships. At the point of prescription, this must include providing the full range of information about antipsychotics, including potential benefits and harms, difficulties withdrawing, and information on alternatives treatments such as psychological therapies.

Keywords: adverse effects; antipsychotics; first person accounts; psychosis; therapeutic relationship; withdrawal effects.