Table 3 Content analysis of participant views about taking antipsychotics on a long-term basis, and attitudes towards reducing or stopping
Category | N (%)a | Example or quotes |
|---|---|---|
Reasons for valuing or accepting long-term antipsychotic medication (n = 132) | ||
Wanting to avoid relapse | 93 (70%) | “I relapse much less when I’m on it, so in that sense I’m happy to take it” |
General feelings of stability or improvement | 48 (36%) | “Helps me stay on an even keel” |
Doctor tells me to take them | 32 (24%) | “I have to take it because I’m told by my doctors, I have to listen to them, I know that” |
Positive symptom reduction | 20 (15%) | “The voices are much worse when I don’t take the medication” |
Sedative and calming effects | 21 (16%) | “Medication keeps me calm and out of trouble” |
Indifference, passivity, uncertainty, ambivalence | 18 (14%) | “I know that I have to take it, it kind of, doesn’t mean nothing no more, y’know … I just take it” |
Other symptom reduction (including depression, agitation, suicidal ideation) | 16 (12%) | “My antipsychotic medication is the reason why I’m alive, because I’ve had suicidal thoughts before” |
Improved functioning | 11 (8%) | “I’m just pleased to be able to function, do normal things” |
Other reasons | 13 (10%) | E.g. to please family members, habit, to receive welfare benefits, to “not feel different” |
Concerns about long term use of antipsychotics and reasons for wanting to reduce or stop (n = 121) | ||
Unspecified adverse effects | 40 (33%) | “Side effects are the main problem … the more you take them, the more you get the side effects” |
Sedative effects | 36 (30%) | “I feel so relentlessly tired and can’t get out of bed like everyone else” |
Weight gain | 33 (27%) | “Olanzapine made me put on a huge amount of weight, 3 stones in 3 months without really changing anything” |
Neurological effects | 31 (26%) | “Makes me weaker, takes my power away. Can’t do as much as I used to, in the gym and things” |
Concern about long term health effects | 25 (21%) | “I am scared of the unseen damage that it may do to my makings … my chemistry … my makings” |
Impact on functioning | 20 (17%) | “I seem to function better when I’m not on tablets.. if I wasn’t on the tablets I’d hear more voices, but I had a job, I’d cook, clean, have my own place, when I’m on the tablets I don’t seem to be doing anything” |
Dislike the idea of taking long term medication | 20 (17%) | “The idea of having to take drugs just to not go crazy doesn’t sit well with me, it makes me feel like I’m not capable of handling life” |
Cognitive and emotional side effects | 15 (12%) | “Lose your feelings, like you’re a dead person. Want to feel life a bit more” |
Doubtful of need for medication | 13 (11%) | “I really want to come off it now, because I feel that I am well” |
Sexual dysfunction | 6 (5%) | “I don’t have interest in sex” |
Other adverse effects | 5 (4%) | “Sometimes I don’t like it, sometimes it makes me feel a bit bloated and sometimes I get a funny taste in my mouth” |
Other reasons | 14 (12%) | E.g. Dislike of injections, embarrassment, fear of addiction, inconvenience, doesn’t resolve symptoms, wanting a ‘holistic approach’ |
Factors that might facilitate antipsychotic reduction or discontinuation (n = 61) | ||
Support from psychiatrists, other healthcare professionals and services | 29 (48%) | “I believe that true collaborative work with the medication staff and myself about reducing my antipsychotic medication is the best way for me to go” |
Gradual reduction | 15 (25%) | “Not too quick, I don’t think you should drop it too quick. Maybe slowly do it” |
Wanting to be independent | 10 (16%) | “If I did that [discontinued medication] I’d be on the road to much more independence” |
Stable circumstances and healthy lifestyle (e.g. employment, career, diet) | 9 (15%) | “I’d need a healthy lifestyle [to reduce]” |
Other | 10 (16%) | E.g. as required medication, family support, alternative therapies (‘natural remedies’), therapy or counselling. |