Understanding how consumers experience medication side‐effects might enable mental health nurses to work more closely with consumers to manage adverse effects (Meehan et al . 2011 ). Although previous qualitative studies have contributed importantly to developing an understanding of specific elements of people's experience of antipsychotic medication side‐effects, no previous study has broadly explored how antipsychotic medications affect the lives of mental health consumers in a community setting. Such an understanding is vital for health professionals working with consumers within a recovery model of care (Roe & Swarbrick 2007 ). The present study extends previous qualitative research through focusing on the impact of antipsychotic medication side‐effects on people in a community care setting in Australia.

Happell et al . ( 2004 ) explored mental health consumers' views on the provision of information, and involvement in decision‐making, about antipsychotic medications. The participants' views differed on whether they were adequately informed about medication side‐effects. The general view of the participants was that health professionals focused on medication adherence, and there was scant regard given to monitoring and evaluating side‐effects. Meehan et al . ( 2011 ) explored mental health consumers' use of coping strategies to manage antipsychotic medication side‐effects. The identified strategies were diverse, including establishing a balanced lifestyle, adopting a healthy diet and sleeping routine, and maintaining a positive outlook on life. Salomon and Hamilton ( 2013 ) used an open‐ended survey instrument to elicit people's reasons for discontinuing antipsychotic medication. The findings indicated that dissatisfaction with information about antipsychotic medication side‐effects was a primary determinant of deciding to discontinue medication.

Several Australian qualitative studies have described people's experience of antipsychotic medication side‐effects (Happell et al . 2004 ; McCann & Clark 2004 ; Meehan et al . 2011 ; Salomon & Hamilton 2013 ). McCann and Clark ( 2004 ) examined the lived experience of schizophrenia in young adults, and reported that antipsychotic medication side‐effects were seen as an additional burden that compounded the burden of the illness. The participants noted that the side‐effects detrimentally influenced their perceptions of body image and undermined their ability to establish and maintain social relationships.

Mental health nurses face a substantial challenge in providing care to consumers taking antipsychotic medications. In particular, mental health nurses need to work in collaboration with consumers to determine if the markedly lower relapse rates offset dissatisfaction with the effectiveness of the antipsychotic medication (Jones & Grey 2008 ; Morrison et al . 2012a ). Also, mental health nurses could discuss with consumers the benefits that might be gained through using psychosocial interventions (Morrison et al . 2012a ). Systematic reviews have established that psychosocial treatment is effective when used in conjunction with antipsychotic medication (Pilling et al . 2002 ; Wykes et al . 2008 ), and limited recent evidence suggests cognitive therapy reduces psychotic symptoms in consumers not taking medication (Morrison et al . 2012b ). To facilitate informed choice, mental health nurses should clearly communicate the risk‐benefit profile of antipsychotic medication to consumers. This would involve discussions on the benefits of psychosocial approaches, and incorporating consumers' views in decisions about care delivery that support recovery (Morrison et al . 2012b ).

Another key reason for non‐adherence to antipsychotic medication is an understandable hesitation to tolerate medication side‐effects. It had been claimed that the use of second‐generation antipsychotic medications would result in fewer side‐effects when compared to first‐generation antipsychotic medications (Jones & Grey 2008 ). However, recent systematic reviews have shown little difference in the incidence of side‐effects between these antipsychotic medications (Leucht et al . 2009b , b ). For mental health consumers taking antipsychotic medications, the proportion that experiences a disturbing side‐effect has been estimated at between 50% and 70% (Arana 2000 ). These side‐effects include parkinsonism, akathisia, and tardive dyskinesia, which have an annualized adverse event rate ranging between 37% and 44%, 26% and 35%, and 8% and 10%, respectively (Miller et al . 2008 ). Other common side‐effects include weight gain, hypersomnia, insomnia, sexual dysfunction, dry mouth, constipation, urinary problems, and dizziness (Lieberman et al . 2005 ; Miller et al . 2008 ).

Approximately half‐to‐three‐quarters of the mental health consumers who have been prescribed antipsychotic medications decide to discontinue taking them (Gray et al . 2002 ; Lieberman et al . 2005 ). One of the main reasons for non‐adherence to antipsychotic medication regimes is a perceived lack of efficacy (Lieberman et al . 2005 ). To some extent, consumers' perceptions about the lack of efficacy appear justified, because recent systematic reviews have demonstrated that antipsychotic medications provide marginal advantages over placebo (Leucht et al . 2009b , b ). However, relapse rates are significantly lower for mental health consumers who adhere to medication regimes, indicating that benefits can be achieved through persisting with medication, although the benefits might not necessarily result in substantially‐improved functioning.

The transcriptions were content analysed using methods recommended by Berg ( 2009 ) and Burnard ( 1991; 1996 ), and important contextual cues were identified through replaying the audio‐recordings. The content analysis was enhanced through combining ‘manifest’ (or surface structure) and ‘latent’ content (deep structure meaning in the transcription). Initially, one of the research team members identified a series of themes and reformulated them into a smaller number of major content themes that captured the participants' key issues. These content themes were then circulated to research team members, who had different professional backgrounds, on several occasions to establish ‘consensus’, which was derived from the team members reflectively considering their own clinical experience and knowledge of the literature. This process contributed to strengthening the validity of the findings (Kvale & Brinkmann 2009 ).

All of the interviews were audio‐recorded and transcribed verbatim. The interviews lasted 45 min on average. This short duration was anticipated, as people with serious mental illness often experience concentration difficulties, which medication side‐effects often exacerbate (Meehan et al . 2011 ). A conversational style of interview was used on all occasions, as recommended by Kvale and Brinkmann ( 2009 ).

All interviews were undertaken by a research assistant, who was an experienced mental health nurse. An interview guide was developed from a review of the literature. The interviews were semistructured based the following key topics: impact of illness and need for antipsychotic medication; impact of medication side‐effects; skills, strategies, and resources to manage antipsychotic medication side‐effects; the helping relationship with the case manager; how side‐effects are assessed; sources; and usefulness of information about side‐effects. These general topics were used to lead ‘the subject toward certain themes but not to certain opinions about these themes’ (Kvale & Brinkmann 2009 ).

Case managers briefly described the study to mental health consumers in their care using antipsychotic medications. Potential participants then met with a research assistant who explained the study in detail and obtained written, informed consent from interested participants. Participants were eligible to participate if they had been prescribed antipsychotic medication and experienced side‐effects. Purposive sampling was used to gather information rich material (Oliver & Jupp 2006 ).

A phenomenological approach was used in the present study. Phenomenology is best suited to develop an understanding of several individuals' shared experiences of a phenomenon (Tuohy et al . 2013 ). Such an approach aligned with the present study's aim, which was to understand people's lived experience of side‐effects resulting from antipsychotic medication.

Analysis of the transcripts revealed five main themes: the impact of side‐effects, attitudes to the use of medication and side‐effects, coping strategies to manage antipsychotic medication side‐effects, issues affecting the case manager/consumer relationship, and criticisms of the system. In the present study, we describe the first three themes, which together encapsulate the personal aspects of antipsychotic medication side‐effects. The other themes, which focus more on mental health system processes, will be detailed in a subsequent publication. Excerpts from the transcripts are provided to illustrate and support the themes.

Interviews were conducted with 10 consumers, at which point rich descriptions had been elicited for the key topics in the interview guide. Seven participants were aged between 28 and 39 years, and the others were 52–69 years old. Six participants had been diagnosed with schizophrenia, and four had been diagnosed with bipolar disorder.

What the participant sees as stigmatizing and restricting might not be perceived that way by the uninformed public. Tremors, weight gain, restlessness, and tiredness might all be perceived differently by those who do not identify them as antipsychotic medication side‐effects. Of particular resonance were stigma or community hostility, and the need for understanding friends. At times, the participants experienced little understanding from the general public:

Individually, each of these adverse effects is reported only occasionally, but the cumulative effect is striking. Each participant reported on average between six and seven medication side‐effects, in addition to the sense of sedation. It is difficult for an outsider to appreciate what this means to individual consumers, and how it impacts on their self‐image and ability to cope. As one participant said: ‘I can handle the illness, but I don't know if I can handle this medication’ (Paul).

All participants reported mental and physical side‐effects, which were often pronounced and had a major disruptive impact on their lives and those of their relatives. Of these effects, the most commonly mentioned was sedation (21/94 mentions). The effect of the medication was, as one participant put it, to ‘make me into a zombie’ (Henry), while another participant said: ‘You're just in limbo, you don't know where you are; you're so zonked’ (John).

A little bit, a little bit. The voices are not as bad as they used to be … but it's been a long time clearing it up. (Bruce)

(Medication) wasn't helping because I was so bombed … I think there should be something better you can take … sometimes the side‐effects of the medication makes it even worse, you know? (John)

Some participants were uncertain about the efficacy of the medication, which tended to ‘control’ the illness: ‘I think it's just sedation, myself’ (Paul), as opposed to treatment for the condition is how one participant described the effects of medication. Another felt that any benefits gained through taking the medication were outweighed by the side‐effects:

It is probably significant that some participants both denied and accepted their condition at different times, even taking ‘pride’ in being a person with serious mental illness on the grounds that it is a less onerous condition (when compared with other forms of illness) and the subject of a great deal of research and innovative developments in treatment. One participant claimed:

My original worry was when I was, explained to me about it was that I would be so calm that I would be like a zombie. That's a big fear that I have, that a psychiatric condition gets so bad that you've got to be put into a state where you're basically a zombie. (Michael)

It was quite frightening, it's like, ‘Oh no, I'm going to be like this for the rest of my life’. If I have to take this medication, I'll be like this for ages and the thought of that was just terrible. (Mary)

I'm reaching the stage after asking … the psychiatrist about the side‐effects, the dryness and the taste, and him telling me well, that's it … I sort of throw the towel in … give up … just suffering in silence. (Michael)

What was evident in this study was that the participants were not resentful of their side‐effects. At worst, there were signs of a culture of hopelessness among the participants, where acceptance had become a pervading way of life. After some years in treatment, one participant reported that:

Another reported that the medication ‘gave me side‐effects for a while, and I was strange for 6 months’, and that he ‘went through hell for a year on that stuff’ (Henry). Despite the strong terms used, the recordings reveal a tone that is musing and reflective, the detachment of an observer, rather than the passion of a participant.

One striking aspect of the interviews was the lack of complaint. Even though the expressions used are often graphic and even harrowing, they tend to be uttered without malice. One participant said:

Most participants (8/10) expressed an attitude of acceptance about the side‐effects. As one participant noted, they might as well ‘just put up with them’ (Jeff). The extent of this acceptance can be peculiar; one participant described a major tranquillizer as a ‘very mild tranquillizer’ because with it, he required only ‘12 hours sleep a day’ (Henry). No irony was discernible in this remark.

These various denials might be seen as rationalizations, where people feel that the side‐effects cannot be justified, either because the illness is not admitted or because they are not helping the illness. The most likely explanation is that the side‐effects are embarrassing or stigmatizing.

The very unwillingness to name the condition seems significant. Denial of side‐effects was shown by some participants. When asked about the ‘drool around your mouth’, the participant wiped it away, denied it, then blamed it on a recent episode of ‘flu’. When a participant's wife suggested that side‐effects stopped him doing household tasks, such as mowing the lawn, he claimed that he chose not to mow the lawn, but could do it. Similarly, on the link between side‐effects and narrowly avoiding driving accidents, the participant attributed it only to ‘bad driving’.

Once or twice I have stopped, only for 2 days at the most, but then my fear of getting worse makes me take it again … because (when) I haven't taken my medication, I start suffering anxiety and I'm waiting to go mad. (Michael)

It's like telling a diabetic to climb up Mt Everest. … Sometimes some doctors have too high expectations of patients, you know. Like some, they put into a mould, like they'll never become anything, and others, I think, they just push a little too hard to get better too quickly, yes. (Mary)

Family support was a factor in coping with both the illness and the medication. Three participants said that they receive useful support from their immediate families, although two said that families can be a hindrance. One participant fell in both categories: her husband (who is also on medication) was supportive, but her parents (who refuse to believe that she has a real illness) were obstructive.

Some participants also discussed the use of non‐medical drugs. Recreational drugs, such as lysergic acid diethylamide and alcohol, were reported to be decidedly unhelpful. Cannabis was described as ‘good because by being stoned you just didn't feel the side‐effects you get from the antipsychotics’ (Robert), but having the disadvantages that ‘it makes you lethargic and slower. When you use large amounts, it can affect your illness and with the mental illness it can trigger things off, I suppose’ (Robert).

I used to get scared that, you know, oh, what if they don't let me have Cogentin, or what if they don't let me have Valium? You know, how am I going to get through? (Mary)

Most participants used some form of treatment to manage side‐effects. Three participants used mild tranquilizers to ease restlessness and pacing. Most participants used some type of anti‐Parkinson agent, which produced other side‐effects, such as dry mouth and memory impairment. These medications also created a dependence that disturbed some of the participants:

The participants' most common strategy to manage side‐effects was to demand a medication switch. Nine of the 10 participants used this option, although two were sceptical of its usefulness. Five participants reported making unilateral changes in their medication. Doctors sometimes tried to dissuade participants from changing the medication or dosage, but staff, in an effort to help, at times would just give other medications to treat the side‐effects.

Discussion

The fact that most participants experienced unpleasant levels of sedation was unsurprising given the established history of side‐effects for this group of medications, but it is nonetheless grounds for some concern. For the majority of people, medication certainly reduces the symptoms of psychotic states, such as voices, other hallucinations, and antisocial behaviours (Lieberman et al. 2005), but at the same time, the level of sedation associated with the symptom‐reduction materially (and sometimes grossly) impairs the consumer's ability to participate in other forms of rehabilitation or to function effectively or rationally in a social context (Miller et al. 2008; Rogers et al. 1998; Seale et al. 2007). Indeed, mental health consumers have commonly reported that the sedation resulting from antipsychotic medication affects their ability to communicate to such an extent that they are unable to engage in conversations beyond providing simple ‘yes’/‘no’ responses to questions (Rogers et al. 1998; Seale et al. 2007).

The sedative effect of antipsychotic medications varies between different medications. In particular, a recent systematic review reported that most second‐generation antipsychotic medications are less sedating than most first‐generation antipsychotic medications (Leucht et al. 2009b). However, haloperidol, a first‐generation antipsychotic medication, is less sedating than second‐generation medications, with the exception of clozapine (Leucht et al. 2009b). When mental health consumers attempt to discuss sedation effects with health professionals, they often find that their concerns are dismissed (Seale et al. 2007). This response might result from health professionals mistaking sedation for schizophrenia symptoms, such as avolition, asociality, withdrawal, anhedonia, and cognitive impairment (Miller et al. 2008). Health professionals need to be aware of this issue and assess whether a change in medication is warranted.

One of the most notable findings in the present study was the considerable number of side‐effects that each participant experienced at the same time. The fact that people using antipsychotic medications report different combinations of side‐effects makes assessment and management difficult. Therefore, problems created by the side‐effects of antipsychotic medications cannot be addressed by blanket‐evaluation strategies or by any simple formula, which is a major obstacle in attempts to deal with the situation (Royal AustralianNew Zealand College of Psychiatrists Clinical Practice Guidelines Team for the Treatment of Schizophrenia Related Disorders 2005). The only generalization that can be safely made is that side‐effects cannot be addressed in a generalized way, and that every consumer must be assessed and treated as an individual whose mix of problems will be unique (Royal AustralianNew Zealand College of Psychiatrists Clinical Practice Guidelines Team for the Treatment of Schizophrenia Related Disorders 2005).

Despite being encouraged to identify side‐effects they experienced and their feelings about these experiences, the participants did not complain about their side‐effects or adopt a ‘poor me’ position in retelling their experience. This attitude might be about seeming to be a ‘good patient’ (Tranulis et al. 2011). The issue here is the extent to which people with a mental illness have been conditioned into accepting the disabling effects of psychotropic medications without protest (Bentall 2010; Britten et al. 2010; Tranulis et al. 2011). The ability of mental health staff to forestall protest arises from the guilt that communities thrust upon the sufferer (Britten et al. 2010; Rogers et al. 1998; Tranulis et al. 2011). Without this guilt and shame, would mental health consumers and their loved ones be so ready to accept that a life of zombie‐like consciousness and physical discomfort is preferable to hearing voices, or would they be demanding more intensive efforts to develop ‘cleaner’ medications?

The other side of this coin is that mental health consumers who are not persuaded to accept their illness and the side‐effects of treating it by currently‐available methods are also likely to reduce their chances of recovery by withdrawing from treatment altogether (Johnson et al. 2007; Tranulis et al. 2011). In most cases, and as was the case in the present study, the withdrawal is only partial and intermittent, and is usually characterized by the repressive term ‘non‐adherence’ (Browne et al. 1998; Johnson et al. 2007; Salomon & Hamilton 2013).

There is general agreement that dysphoric reactions are a primary reason for non‐adherence with antipsychotic medications (Awad & Voruganti 2004; Awad et al. 1996; Browne et al. 1998; Garavan et al. 1998). What is seldom explicitly stated in these studies is the subjective meaning of dysphoria. From the client's perspective, ‘dysphoria’ translates as ‘feeling bloody awful’ – mentally and physically – and it is difficult to see how a mental health consumer can be persuaded to participate enthusiastically in a treatment programme if being medicated, and (comparatively) symptom‐free feels considerably worse than having a mental illness in the first place.

In comparison to first‐generation antipsychotic medications, second‐generation antipsychotic medications, when initially introduced, were promoted as causing fewer, or less severe, side‐effects. However, recent systematic reviews have found little difference in side‐effect profiles between first‐ and second‐generation antipsychotic medications (Hartling et al. 2012; Peluso et al. 2012; Rummel‐Kluge et al. 2012). Again, it seems unrealistic to expect mental health consumers to strictly adhere to antipsychotic medication regimes when doing so impacts significantly on quality of life.

It should be noted that some participants in the present study alluded to the fact that the use of antipsychotic medications resulted in gradual reductions in unwelcome symptoms (such as hearing voices), and these might have outweighed the adverse effects of the medication. This finding reflects previous research that found that mental health consumers were ambivalent about antipsychotic medications and viewed them as ‘a necessary evil’ (Moritz et al. 2009). Such attitudes highlight the difficulties health professionals have in promoting adherence to antipsychotic medications, which might initially provide relatively indiscernible benefits, but in the long term, significantly reduce relapse rates (Marder 1999).

Most participants in this study doubted whether antipsychotic medications provided tangible therapeutic improvements, which accords with the findings of systematic reviews indicating that antipsychotic medications offer small benefits over placebo (Leucht et al. 2009b,b). Given such marginal benefits, it seems surprising that the participants were resigned to enduring the often significant side‐effects and did not appear to consider discontinuing medication, even on a temporary basis. This attitude might perhaps result from the emphasis health professionals place on adherence to medication regimes, which at times can be coercive in nature (Appelbaum & Le Melle 2008; Sullivan & Floyd 2012). However, mental health nurses have a valuable role in supporting mental health consumers to develop and maintain recovery goals that could potentially include not taking antipsychotic medications and exploring other types of therapy and support.

There are various strategies nurses could use to enable mental health consumers to take more control over decisions about antipsychotic medications. Nurses can initially ask consumers to reflect on the effect of medication: What am I really like when I am off medication? Have my medication needs changed? What do studies and research evidence say about medications? In following this process, consumers can draw on these insights and become empowered to alter the power imbalance between themselves and health professionals (Roe & Swarbrick 2007).

Nurses can readdress this power imbalance through attending meetings between consumers and prescribing health professionals and acting as an advocate for consumers (Roe & Swarbrick 2007). Such advocacy, when approached judiciously, could improve information sharing between health professionals and enhance collaboration, resulting in improved outcomes for mental health consumers (Craven & Bland 2006). Also, nurses can further promote self‐determination through educating consumers about coping strategies that can reduce the amount of medication required, and perhaps eventually eliminate the need for medications (Roe & Swarbrick 2007). Finally, nurses could support consumers in identifying their own ‘personal medicine’, which has been conceptualized as activities that offer consumers a sense of meaning, purpose, and self‐esteem (Deegan 2005). Consumers can then use these personal resources to potentially change medication regimes and better manage antipsychotic medication side‐effects.

The use of standardized rating scales for the assessment and monitoring of medication side‐effects might be valuable in providing individualized care to consumers. Meehan et al. (2007) suggest that the assessment scales might increase staff awareness of the problems, elicit data that might be used as an adjunct to clinical judgment, and provide a focus for discussion with a client on side‐effects. The Liverpool University Neuroleptic Side‐Effect Rating Scale (LUNSERS) developed in the UK by Day et al. (1995) is one such assessment tool that has demonstrated utility in the monitoring antipsychotic side‐effects (Morrison et al. 2000). Mental health nurses could be encouraged to use the LUNSERS to monitor side‐effects, and side‐effects rated as being problematic could become the focus of discussion between consumer and clinician.