Journal of Psychiatric and Mental Health Nursing, 2016, 23, 108–115
What is it like to take antipsychotic medication? A qualitative study of patients with first-episode psychosis R. GRAY1 1 2
RN, P
hD & K. DEANE2
P
hD
Director, Health Services and Population Research Centre, Hamad Medical Corporation, Doha, Qatar, and Senior Lecturer, School of Health Sciences, University of East Anglia, Norwich, UK
Keywords: drug therapies, early intervention, interpersonal skills, psychosis, quali-
Accessible summary
tative methodology
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Correspondence: Richard Gray Health Services and Population Research Centre PO Box 3050 Hamad Medical Corporation Doha Qatar E-mail: [email protected] Accepted for publication: 30 November 2015 doi: 10.1111/jpm.12288
What is known on the subject? Antipsychotic drugs are an important part of treatment for most patients with first episode psychosis. We do not know much about what it is like to take these drugs from the patient’s point of view. What this paper adds to existing knowledge? We talked to 20 young people with psychosis about their experiences of taking antipsychotic drugs. Patients relationship with medication was complex, young people found medication often to be both good and bad at the same time. We were interested in how seemingly trivial issues – colour, taste, size, name – could be very important to young people and could result in them stopping.
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What are the implications for practice? We think our study highlights the complicated internal struggles that people with first episode psychosis have with medication. Our study highlights how Nurses and Doctors need to try and better understand what it is like to take these drugs and work collaboratively with patients to support them to make informed choices about treatment.
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Abstract Background: Low-dose antipsychotic medication is an important part of treatment for people experiencing a first episode of psychosis. Little is known about this group of patients’ experiences of taking medication. Method: A qualitative study of purposively sampled young people experiencing a first episode of psychosis was carried out. A mental health nurse working in the early psychosis team interviewed participants using a structured topic guide. Interviews were subjected to thematic analysis. Results: Interviews were completed with 20 young people. Thematic analysis generated six themes: (1) the drugs do work, (2) the drugs don’t work (as well as I’d like), (3) side effects, (4) the indirect effects of medication, (5) rage against the machine and (6) the not trivial issues about medication. Conclusion: Our overarching meta-theme was that young people’s experience of taking antipsychotics was complex; medication was often considered good and bad at the same time. Our observations underpin the importance of helping patients think through the use of antipsychotic medication in supporting their personal recovery.
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Patient experiences of antipsychotic medication
Background Psychosis – of which the two most common symptoms are hallucinations and delusions – typically occurs when people are in their late teens through their early 20s (Kessler et al. 2007). The early part of the illness is seen as a critical phase of the disorder. Early intervention services aim to minimize the duration of untreated psychosis and provide a range of psychosocial, psychological and pharmacological treatments (Group I.E.P.A.W., 2005). It is argued that people are thought to be most responsive to treatment during the first psychotic episode. There is equivocal evidence from systematic reviews about the effectiveness of antipsychotic medication in early psychosis. For example Bola et al. (2011) reviewed five studies involving 998 patients with early schizophrenia and stated that they were not able to draw definitive conclusions about antipsychotic effectiveness. However, they did observe that patients experienced significant medication-related side effects. Other systematic reviews of antipsychotic treatment in early psychosis have compared differences in the efficacy of atypical [such as olanzapine that do not cause extrapyramidal side effects (EPS)] with typical (such as haloperidol that do cause EPS) antipsychotic drugs (Crossley et al. 2010). The authors reviewed 15 trials involving 2522 patients and reported no significant efficacy differences between the two groups of drugs. There were important differences in the types of side effects patients’ experienced; those on typical drugs were more likely to experience extrapyramidal symptoms, and those on atypicals were more likely to get weight gain. Because patients with early psychosis are seemingly so sensitive to side effects, authors of clinical guidelines recommended the use of the lowest possible dose of antipsychotics drugs. In part, this is because there is concern that negative formative experiences taking antipsychotic drugs may colour their views about psychiatric care and treatment in the future (Crossley et al. 2010). While there is a large body of research that has examined medication effectiveness, there have been few studies that have explored patient experiences. Carrick et al. (2004) interviewed 25 patients about their experiences of taking antipsychotic medication. They reported that patients tend to have a global view of medication as either ‘good’ or ‘terrible’ and do not discriminate between the effects of medication on symptoms and side effects. This categorical view of medication was tempered by awareness from participants that there was no such thing as a perfect treatment. Rather they had a more pragmatic desire to find a livable with solution. Carder et al. (2003) © 2016 John Wiley & Sons Ltd
reported similar observations in their study of 83 patients with established schizophrenia. They emphasized the impact of medication on patients’ self-identity. From talking to 16 bipolar patients about their beliefs on treatment, Clatworthy et al. (2007) elicited particular concern about the long-term consequences of taking medication. In a study of 44 prisoners’ experiences of taking antipsychotic medication, the authors observed how participants’ views about medication were influenced by their environment, in this case being in prison. Counter-intuitively prisoners viewed some side effects (mainly weight gain and sedation) particularly positively (Gray et al. 2008, Mills et al. 2011). Developing a better understanding of first-episode patients’ experiences of taking antipsychotic medication would inform and potentially improve the conversations clinicians have about treatment with the patients. We searched the literature and found no previous studies that have reported first-episode patients’ experiences of taking antipsychotic medication. The objective of this study was therefore to examine the experience of taking antipsychotic medication in patients with first-episode psychosis.
Methods We sought to interview patients in receipt of services from an early intervention team in the East of England. Our reporting strictly adheres to COREQ guidelines (Consolidated Criteria for Reporting Qualitative Research, Tong et al. 2007). The study was reviewed and approved by the Essex 2 Research Ethics Committee (10/H0302/16). The National Health Service Trust (service) gave approval for the study to be conducted.
Research team and reflexivity The research team comprised a carer (female), a clinician working in the early psychosis team (IM, a registered nurse, male) and academic researchers (KD, female/RG, registered nurse, male). The service user and carer had not previously been involved in a research project. IM was undertaking the project as part of his MRES (Masters in Research) and was a senior clinical manager working in mental health services. KD and RG were university-based PhD researchers who have previous experience undertaking qualitative research. Study participants were recruited by IM. Through team meetings and supervision of clinical staff members he had an understanding of the patients on the teams’ caseload. The majority of patients did not have a clinical relationship with IM prior to the start of the study. We acknowledge that the position of IM in the team may have created 109
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an (unintended) expectation in clinical team members to pressurize patients on their caseload to participate in the study. We explained to clinical team members and patients that participation was entirely voluntary. When explaining the study to potential participants, IM was introduced as a senior and experienced member of the clinical team who was doing this study as part of a funded research project.
Study design The methodological orientation that underpinned this study was that of thematic analysis. This method reports experiences, meanings and the reality described by participants (Braun & Clarke 2006). The method entails an integrative, interpretative process between the data and the researcher in order to complete the coding process. Analysis involves the careful reading of all the data, looking to identify meaningful units of text that are relevant to the area being researched and assigning these ‘codes’. Codes can then be combined to form an overarching metatheme.
issues they had about the study before being asked to provide written informed consent (by IM).
Setting A series of four focus groups – each attended by up to six young people – facilitated by IM and RG were planned. A community centre was booked for the meetings as this was felt to be a neutral location where participants would be more relaxed and comfortable in talking. We were acutely aware that attending a focus group, talking about psychosis and medication, might be a difficult and stressful experience for participants. However, we felt that there was merit to young people coming together to talk about their views, and by being in a group setting we would get more in-depth responses to questions (Morgan 1996). Focus groups are frequently used in health research (Lawton & Parker 1999) and have been used successfully with schizophrenia patients (Schulze & Angermeyer 2003). Individual interviews with a researcher in their own homes (or a place of their choosing) were offered to young people who said that they preferred face-to-face interviews to talk about their experiences.
Participant selection The study was conducted in Suffolk in the East of England, a rural county, with the city of Ipswich as the major urban area. The county has a population of 730 100, of which approximately 112 00 are in the target age group. The vast majority (95%) are of white ethnic origin. At the time of the study, the Early Psychosis Team provided a multidisciplinary service to the whole county and had 198 open cases. We aimed to involve 24 young people aged up to 35 years who were experiencing their first episode of psychosis and were currently receiving treatment from the early psychosis team. We adopted a purposive sampling strategy and aimed to ensure participants that had positive as well as negative experiences of treatment. Talking about psychosis and its treatment is sensitive, and we anticipated that potential participants might be reticent about consenting to participate. We estimated that we might need to ask three or four patients to get one to agree to take part in the research. The 18 care coordinators in the team were asked to help with recruitment. Each was invited to approach (face to face) four patients on their caseload, to explain the study, give them an information sheet and ask them if they were interested in participating. Care coordinators were also asked to consider if patients had capacity to consent. Those able to give consent were given a future opportunity to discuss any 110
Topic guide The research group developed a topic guide to support the interviewer in their conversations. Participants were asked to talk about their experiences – negative and positive – of taking antipsychotic medication. We deliberately wanted young people to talk about their negative experiences first to provide a cathartic space where they could talk about their pent up worries and concerns. The interviewer picked up on prompts and invited the participant to explore or elaborate on issues they identified. The topic guide was piloted by IM on two patients and some refinements were made based on this feedback. We intended to audio record interviews, but were aware that some participants might find this stressful and anxiety provoking. As an alternative we were prepared to manually record (in written note form) conversations.
Results A total of 20 young people were interviewed. None agreed to take part in focus groups. All the interviews were conducted individually in the patients’ own home. Also all participants, when offered, requested that their care coordinator was present during the interview. This may have impacted on participants’ perceived freedom to fully express their views. We acknowledge that participant responses may have been coloured by the presence of two © 2016 John Wiley & Sons Ltd
Patient experiences of antipsychotic medication
health professionals in the room during the interview. Participants were generally anxious and worried about participating in the study. We repeatedly assured them that whatever they told us was confidential and would not be shared with the wider clinical team. Participant nervousness may have been because talking freely about medication was evocative and difficult. However, IM reported in their field notes that with the majority of participants there were illness-related factors, paranoia and suspiciousness, that seemed to underpin this anxiety. We were not successful in getting participants to check interview transcripts. Interviews were relatively brief, typically lasting between 20 and 30 min. No repeated interviews were conducted. We felt that having completed 20 interviews no new and relevant information was being generated from participants and we had achieved data saturation.
Description of the sample The people that took part in the study were young, on average in their mid-20s (26 years, SD = 3.4). Most were male (n = 14, 70%), white British (n = 16, 80%), single (n = 17, 85%) and living with their parents (n = 12, 60%). Half of the sample (50%) were unemployed, a third were in paid employment (n = 7, 35%) and 3 (15%) were students in full-time education. Participant had – on average – been in contact with the first-episode team for just under 2 years (20 months, SD = 10). The majority (n = 18, 90%) were prescribed low-dose oral atypical (risperidone, olanzapine, quetiapine) antipsychotic medication. Although we did record patients’ preliminary diagnosis, we do not feel that reporting it is contextually informative.
Data coding We followed Braun & Clarke’s (2006) process for thematic data analysis. Data were manually coded by IM and then reviewed by KD and RG. Preliminary themes were then derived from the data. From a total of 20 initial themes, these were refined through discussion with the wider advisory group to a list of six. We have used quotations from participants to illuminate each theme. Each quote has a participant number (P1–20). We also indicate the young persons age (in years) and their gender (M = male, F = female).
Theme 1: The drugs do work A number of participants talked openly about the positive effects of taking antipsychotic medication. Two patients © 2016 John Wiley & Sons Ltd
talked about how medication had completely got rid of their psychotic symptoms stating that the voices have gone [P13, F, 35] and I haven’t had any psychotic things [P15, M, 25]. Several patients talked about how medication had tempered the distress of psychosis [P17, M, 28]. Some participants talked about medication helping but found it hard to articulate how. One patient said, It can make me feel a bit better, I find it hard to describe what it does for me but if I stop it I feel really bad [P12, M, 30]. It seemed significant that several patients talked specifically about how medication stopped them doing things. I think my medication helps me not do what the voice is saying. [P3, F, 24] It helps me not to react as I was reacting before. It stops me doing some weird things. [P19, M, 23] I think I would get more horrible thoughts if I didn’t take my Clozaril, I think I would get them more often too. Before being on Clozaril I would self-harm. [P3, F, 24]
The comment from one participant was particularly illuminating because he talked about how he can only feel the benefit when I remember what it was like before [P9, M 24] perhaps drawing attention to how – as symptoms ameliorate – people forget the helpful effects of medication.
Sub-theme: effect on mood When patients were talking about the positive effect of antipsychotic medication the effect on patients’ mood emerged as an important sub-theme. Mood problems are common in people experiencing early psychosis. It was illuminating how participants described the effect of medication on their mood helps keep my mood in balance [P1, M, 23], keeps my mood stable [P10, F, 23] and when I didn’t have it I felt moody, it made me feel happier and cheered me up [P7, M, 20]. Mood and how medication impacts on mood can often be overlooked in clinical practice and we wondered if focusing on this might enhance clinical conversations about medication.
Theme 2: the drugs don’t work (as well as I’d like) Not all participants talked positively about antipsychotic medication. Several of the young people that we talked to told us how the drugs had no beneficial effects at all. They keep people on these drugs for too long, I am no better than when I was not on them. [P6, M, 22] I can not feel the injection. I get no effects from it. It does nothing to me. I don’t have a mental problem [P4, M, 27] 111
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Others expressed disappointment and a sense of frustration that medication had not worked as well as they had hoped and they continued to experience some symptoms. It doesn’t work as well as I hoped for, I still feel worried and paranoid and I still hear voices. I’m relying on something to help me get through although feeling it was not necessary to take it. [P6, M, 22] It could work better and keep me more stable. I still get anxiety and panic attacks and I still hear voices even though I take my medication. [P16, F, 27] They [antipsychotics] reduce symptoms, not get rid of them all together. [P20, M 27]
Theme 3: side effects Two of the patients we interviewed said that they did not experience any side effects from the antipsychotic medication they were taking I have no bad reactions, no side effects [P6, M, 22], I haven’t experienced any side effects [P16, F, 27]. The majority, however, described experiencing some side effects from antipsychotic medication. From our coding, sedation was by far and away the most commonly reported side effect.
Sub-theme: sedation Some participants found sedation to be particularly troubling. The first time after taking it I couldn’t get up for 12 h. Now 2–4 h after taking it I can get up but I can’t get out of bed. It makes me dark under my eyes. It makes me feel weak for hours. I have somehow to get used to it. [P1, M, 23] If you move about a lot you don’t notice it, if you take down time the effects seem to snowball and it gets on top of you. If you’re tired it makes you more tired. It’s like walking in water, you have to fight the resistance. [P2, M, 30]
Sedation was not consistently viewed negatively. Sleep was talked about as part of a process of healing from psychosis. For example, it [antipsychotic medication] gives me [a] nice sleep and relaxation when I take it [P1, M, 23] and feeling drowsy from the medication can help me feel better [P12, M, 30]. Sleep was also described as damping down the desire to get involved in difficult situations, for example one patient describe how the fact that they made me drowsy might have taken me out of situations that were dangerous. I was thinking and doing odd things. It took them out of the equation and allowed me to find new directions for myself [P12, M, 30]. 112
Sub-theme: other side effects Patients talked about experiencing a number of other side effects from taking antipsychotic medication. Weight gain seemed to be particularly troublesome for male participants in this study. One described how weight gain concerns me most and the fact that I can’t lose weight while I am taking medication [P17, 17, M]. This is perhaps surprising as clinicians – at least anecdotally – often dismissing weight gain as an issue that does not particularly trouble men. Atypical antipsychotics are – by definition – not meant to cause extrapyramidal symptoms. We were surprised that in a group of patients predominantly treated with these drugs several talked about not only experiencing these symptoms, but also that they did not seem to have been recognized by clinicians. For example, one participant talked about their experience in some detail risperidone made me step when I first went on it. Every time I stood up I had bad anxiety, my hands would sweat, it was all down to the risperidone. It took 6 months to go away. I still kept taking it because I didn’t want to relapse. I was so determined not to go back into hospital [P8, F, 25]. It is concerning that this young woman was prepared to tolerate clearly distressing side effects and continue medication because of her fear of relapse (and admission to hospital).
Sub-theme: not inconsequential side effects Participants also talked about side effects that might – from a clinical perspective – be considered insignificant. For example one patient said they had noticed body odour that I didn’t have before [P5, M, 27]. Clearly, a cause of considerable embarrassment that the clinical team had neither picked up on nor tried to do anything about it.
Theme 4: The indirect effects of medication Clinically antipsychotic medication is evaluated in terms of how it affects psychotic symptoms. Participants in this study talked a lot about what we have described as the ‘indirect effects of medication’. Sometimes these effects were positive. For example, one participant said I could do more when I had it. Made me feel like doing more stuff. When I don’t have it I get frustrated cause I can’t be bothered to do anything [P7, M, 20]. More often than not these effects were negative. Talking about their loss of motivation one patient said, Since I have been taking mediation I feel less enthusiastic about reading and making music. Less enthusiastic about writing my diary. I feel less enthusiastic about life [P5, M, 27]. A second young © 2016 John Wiley & Sons Ltd
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person talked about how medication had made it hard to have a conversation. It makes thoughts hard to get through. Things fell into place before. Now you have to search for them in your mind, drowsiness takes over. It is difficult to lead a normal conversation; it is more of struggle to find your words, you are trying to search your mind. I have needed to find new ways to communicate it is easier but not as I want it. I have to get used to it. [P2, M, 30]
Theme 5: Rage against the machine There was a strong desire from the young people we talked to for help that was not in the form of medication. Some, however, seemed to reticently accept that medication was a price that had to be paid to keep them well and out of hospital. From other participants there was a sense of frustration about the side effects they were forced to endure and the crushing effect medication had on their motivation and communication. There was one quote from a participant who powerfully and eloquently sets out his sense of rage and frustration about the central position medication has in psychosis treatment. It is the companies and the research. I was dead against them when I was first taking it because of how it made me feel. I started to accumulate reasons not to take it. I raged against the drug companies and their propaganda, making themselves the best option. [P2, M, 30]
Theme 6: The not trivial issues about medication Participants talked about a number of seemingly trivial issues that had a major impact on their perception of antipsychotic medication. For example, one patient talked about not taking a medication because the colour of the pill had no meaning to them. When the medication was changed to one that was a meaningful colour they were happy to take the pills. Along similar lines another patient talked about how the name of the company making the drug made them question taking medication. When I was unwell the color and the packaging of the medication concerned me. The color of the tablets and the word ‘Lilly’ on the packet were significant to me and off putting. The manufacturers name ‘Lilly’ said to me ‘you big Lilly’ and it made me decide to not take it. [P5, M, 27]
Several patients expressed dissatisfaction with the number and taste of tablets they were expected to take. One patient said, the taste was disgusting [P7, M, 20] another participant said they should make it in one tablet [P2, M, © 2016 John Wiley & Sons Ltd
30]. Often patients confused the number of tablets with the amount (dose) of medication they were taking. Participants generally talked about a reduction in the number of pills or the dose of medication positively. For example, As olanzapine is coming down I am clinging to the fact that I might be finally free of it [P2, M, 30].
Discussion The aim of this study was to examine patients with firstepisode psychosis experiences of taking antipsychotic medication. In total, we interviewed 20 young people. Perhaps our most important observation was that patients’ relationship with antipsychotic medication was complex. There was a palpable sense from the people that we talked to of an inner struggle with their need for medication; that medication was both good and a bad at the same time. Our observation is somewhat discordant with the work done by Carrick et al. (2004) who observed that patients described medication as either good or terrible. The different patient populations in the studies might explain this difference. However, we note that patients in both studies make similar comments about their struggle with medication. We felt that the young people we interviewed showed a sophisticated, pragmatic view of the role of medication in supporting their recovery. Carder et al. (2003) described a profound resistance to medication because it conflicted with their identity as a healthy person. We expected this reticence to medication to be heightened in the young people in this study. This did not seem to be the case. Most discussed how medication had beneficial effects, several reporting frustration that they still experienced some residual psychotic symptoms. That said there was a palpable sense from the young people we spoke to of a desire to get off medication as soon as possible. From our observations, we wonder if patients’ resistance to medication might develop over time because they develop a sense of treatment being imposed. This might then underscore the importance of joint working with clinicians to help young people consider, and learn from, their treatment choices both in the short and longer term. In this study, young people talked about practical issues that impacted on their views of medication. We described these as ‘the not so trivial issues about medication’. Often these were idiosyncratic, e.g. the name of the drug company (Lilly) evoking feelings of emasculation. To us this observation emphasized the need for clinicians to spend time listening to patients views and experiences, helping them to try and work out practical solutions to problems. There is good evidence that the complexity of a treatment regime impacts on patient 113
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adherence (Ingersoll & Cohen 2008). Our observations may encourage clinician to pay more attention to practical problems with medication in their day-to-day work with patients. Sedation was the side effect participants talked about most frequently. There is a popular perception – among clinicians – that sedation is particularly troubling for patients and a barrier to recovery (Miller 2004). As other authors have observed sedation – as a side effect – might be more complex than we instinctively think (Mills et al. 2011). Our observations may also suggest that sedation in patients with early psychosis might not always be a bad thing. Sleep disturbance is common in patients with psychosis. For some young people sedation was seen as beneficial, giving them a chance to rest and recover. Perhaps our observations highlight how – over time – what people need and want from medication can change. Patients need to be on the right medication at the right time. We argue that this might require clinicians to be more responsive to switching and changing patient’s medication than they perhaps currently are.
Study limitations There are a number of important limitations to our study that need to be considered when interpreting our findings. Our study was conducted in the East of England where there is little ethnic diversity; the majority of our sample was white British. Focusing on engaging a more ethnically diverse population would enhance future research. We intended – but were not able to – interview patients in focus groups. We felt that this environment would help generate a broader range of opinion. The young people in this study were resistant to this approach. Interviews were conducted on a one-to-one basis by a mental health professional. When offered the opportunity, participants asked that their care coordinator sit in on the interview. We wonder what effect the presence of two mental health professionals had on the participants’ ability to speak openly about their experiences of taking antipsychotic medication. Were we to repeat the study we might chose to work with peer researchers with the aim of providing patients with a safe space in which they could talk freely about their experiences. That none of the participants would consent to have interviews audio recorded is a further limitation. We explained to participants that we would like to audio record the conversation, but we would understand if they would rather than we made notes about what they said. It might be argued that to give people this option was a mis-
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take. Alternatively that we gave people a choice may have settled any anxiety they were feeling and resulted in more honest responses. The recruitment of participants to this study was challenging and may have produced a biased (or distorted) sample. Medication was a sensitive topic and the young people in the service were not enthusiastic about engaging in the study. It is possible that they were worried that disclosure of covert non-adherence may have resulted in being forced back to hospital or resulted in increases in medication doses. Perhaps patients’ reticence suggests that as health professionals we do not engage enough with patients in a collaborative way when discussing their medication.
Conclusion As far as we can determine, this is the first study to look at the experience of taking antipsychotic medication in young people with early psychosis. Were we to try to distil our observations into a simple phrase it might be ‘it’s complicated’. It has become fashionable to dismiss the part medication plays in supporting the recovery of people with early psychosis. The evidence of the efficacy of antipsychotics in this group of patients is far from compelling. Few of the young people we interviewed however dismissed medication as just plain bad. Their relationship with medication was temporal, sometimes side effects – particularly sedation – were perceived positively, seemingly providing respite and space to heal. At other times, side effects were a barrier to patients moving on with their lives. Many participants were frustrated that they continued to experience psychotic symptoms even though they were taking medication. There was also a desire among participants to try and get off medication as soon as possible. When we discussed stopping there was muted anxiety about the consequences. We feel that clinicians need to be more collaborative and responsive to discussing how medication choices with these young people. While this is easy for us to write it is much harder to realize in practice.
Acknowledgments The East of England Clinical Researcher Training Scheme supported this study. Ian Meek undertook the fieldwork for this study, but has subsequently retired from clinical practice. We are grateful to Ian Meek and to other members of the project steering group for their invaluable advice and guidance.
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Conflict of interest
honoraria and provided consultancy to AstraZeneca, Bristol-Myers Squibb, Wyeth, Jannsen Cilag, Eli Lilly and Co. and Otsuka Pharmaceutical Europe Ltd.
RG received no financial support from any pharmaceutical company in 2014 or 2015. Previously RG received
Bipolar Disorders 9, 656–664. doi:10.1111/
References
Lawton R. & Parker D. (1999) Procedures and the professional: the case of the British NHS1.
j.1399-5618.2007.00434.x. Crossley N.A., Constante M., McGuire P., et al.
Social Science and Medicine 48, 353–361.
Bola J., Kao D., Soydan H., et al. (2011).
(2010) Efficacy of atypical v. typical antipsy-
Antipsychotic medication for early episode
chotics in the treatment of early psychosis:
Miller D. (2004) Atypical Antipsychotics: Sleep,
schizophrenia. Cochrane Database of System-
meta-analysis. British Journal of Psychiatry
Sedation, and Efficacy. Journal of Clinical Psy-
atic Reviews 6, CD006374. doi: 10.1002/
196, 434–439. doi:10.1192/bjp.bp.109.066217.
14651858.CD006374.pub2.
doi:10.1016/S0277-9536(98)00345-1.
chiatry 6(suppl 2), 3–7.
Gray R., Bressington D., Lathlean J., et al. (2008)
Mills A., Lathlean J., Bressington D., et al. (2011)
Braun V. & Clarke V. (2006) Using thematic
Relationship between adherence, symptoms,
Prisoners’ experiences of antipsychotic medica-
analysis in psychology. Qualitative Research in
treatment attitudes, satisfaction, and side effects
tion: influences on adherence. The Journal of
Psychology 3, 77–101. doi:10.1191/147808
in prisoners taking antipsychotic medication.
Forensic Psychiatry & Psychology 22, 110–
8706qp063oa.
The Journal of Forensic Psychiatry & Psychol-
125. doi:10.1080/14789949.2010.509804.
Carder P.C., Vuckovic N. & Green C.A. (2003)
doi:10.1080/
Morgan D. (1996) Focus groups as qualitative
long-term medication use. Journal of Clinical
Group I.E.P.A.W. (2005) International clinical
Schulze B. & Angermeyer M.C. (2003) Subjective
Pharmacy and Therapeutics 28, 409–417.
practice guidelines for early psychosis. British
experiences of stigma. A focus group study of
doi:10.1046/j.0269-4727.2003.00511.x.
Journal
schizophrenic patients, their relatives and men-
Negotiating medications: patient perceptions of
Carrick R., Mitchell A., Powell R.A., et al. (2004) The quest for well-being: a qualitative study
of
the
antipsychotic
medication.
Psychotherapy: Practice
experience
77,
Theory, 19–33.
of
ogy
19,
335–351.
research. Sage, California, USA.
14789940802113493.
of
Psychiatry
187,
s120–s124.
tal health professionals. Social Science and
doi:10.1192/bjp.187.48.s120. Ingersoll K.S. & Cohen J. (2008) The impact of
Medicine 56, 299–312. doi:10.1016/S0277-
taking
medication regimen factors on adherence to
Psychology
and
chronic treatment: a review of literature. Jour-
Tong A., Sainsbury P. & Craig J. (2007) Consoli-
Research
and
nal of Behavioral Medicine 31, 213–224.
dated criteria for reporting qualitative research
doi:10.1007/s10865-007-9147-y.
(COREQ): a 32-item checklist for interviews
doi:10.1348/
147608304322874236.
Kessler R.C., Amminger G.P., Aguilar-Gaxiola S.,
9536(02)00028-X.
and focus groups. International Journal for
Clatworthy J., Bowskill R., Rank T., et al. (2007)
et al. (2007) Age of onset of mental disorders:
Quality
Adherence to medication in bipolar disorder: a
a review of recent literature. Current Opinion
doi:10.1093/intqhc/mzm042.
qualitative study exploring the role of patients’
in
beliefs about the condition and its treatment.
YCO.0b013e32816ebc8c.
© 2016 John Wiley & Sons Ltd
Psychiatry
20,
359–364.
in
Health
Care
19,
349–357.
doi:10.1097/
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What is it like to take antipsychotic medication? A qualitative study of patients with first-episode psychosis R. GRAY1 1 2
RN, P
hD & K. DEANE2
P
hD
Director, Health Services and Population Research Centre, Hamad Medical Corporation, Doha, Qatar, and Senior Lecturer, School of Health Sciences, University of East Anglia, Norwich, UK
Keywords: drug therapies, early intervention, interpersonal skills, psychosis, quali-
Accessible summary
tative methodology
• •
Correspondence: Richard Gray Health Services and Population Research Centre PO Box 3050 Hamad Medical Corporation Doha Qatar E-mail: [email protected] Accepted for publication: 30 November 2015 doi: 10.1111/jpm.12288
What is known on the subject? Antipsychotic drugs are an important part of treatment for most patients with first episode psychosis. We do not know much about what it is like to take these drugs from the patient’s point of view. What this paper adds to existing knowledge? We talked to 20 young people with psychosis about their experiences of taking antipsychotic drugs. Patients relationship with medication was complex, young people found medication often to be both good and bad at the same time. We were interested in how seemingly trivial issues – colour, taste, size, name – could be very important to young people and could result in them stopping.
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What are the implications for practice? We think our study highlights the complicated internal struggles that people with first episode psychosis have with medication. Our study highlights how Nurses and Doctors need to try and better understand what it is like to take these drugs and work collaboratively with patients to support them to make informed choices about treatment.
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Abstract Background: Low-dose antipsychotic medication is an important part of treatment for people experiencing a first episode of psychosis. Little is known about this group of patients’ experiences of taking medication. Method: A qualitative study of purposively sampled young people experiencing a first episode of psychosis was carried out. A mental health nurse working in the early psychosis team interviewed participants using a structured topic guide. Interviews were subjected to thematic analysis. Results: Interviews were completed with 20 young people. Thematic analysis generated six themes: (1) the drugs do work, (2) the drugs don’t work (as well as I’d like), (3) side effects, (4) the indirect effects of medication, (5) rage against the machine and (6) the not trivial issues about medication. Conclusion: Our overarching meta-theme was that young people’s experience of taking antipsychotics was complex; medication was often considered good and bad at the same time. Our observations underpin the importance of helping patients think through the use of antipsychotic medication in supporting their personal recovery.
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Background Psychosis – of which the two most common symptoms are hallucinations and delusions – typically occurs when people are in their late teens through their early 20s (Kessler et al. 2007). The early part of the illness is seen as a critical phase of the disorder. Early intervention services aim to minimize the duration of untreated psychosis and provide a range of psychosocial, psychological and pharmacological treatments (Group I.E.P.A.W., 2005). It is argued that people are thought to be most responsive to treatment during the first psychotic episode. There is equivocal evidence from systematic reviews about the effectiveness of antipsychotic medication in early psychosis. For example Bola et al. (2011) reviewed five studies involving 998 patients with early schizophrenia and stated that they were not able to draw definitive conclusions about antipsychotic effectiveness. However, they did observe that patients experienced significant medication-related side effects. Other systematic reviews of antipsychotic treatment in early psychosis have compared differences in the efficacy of atypical [such as olanzapine that do not cause extrapyramidal side effects (EPS)] with typical (such as haloperidol that do cause EPS) antipsychotic drugs (Crossley et al. 2010). The authors reviewed 15 trials involving 2522 patients and reported no significant efficacy differences between the two groups of drugs. There were important differences in the types of side effects patients’ experienced; those on typical drugs were more likely to experience extrapyramidal symptoms, and those on atypicals were more likely to get weight gain. Because patients with early psychosis are seemingly so sensitive to side effects, authors of clinical guidelines recommended the use of the lowest possible dose of antipsychotics drugs. In part, this is because there is concern that negative formative experiences taking antipsychotic drugs may colour their views about psychiatric care and treatment in the future (Crossley et al. 2010). While there is a large body of research that has examined medication effectiveness, there have been few studies that have explored patient experiences. Carrick et al. (2004) interviewed 25 patients about their experiences of taking antipsychotic medication. They reported that patients tend to have a global view of medication as either ‘good’ or ‘terrible’ and do not discriminate between the effects of medication on symptoms and side effects. This categorical view of medication was tempered by awareness from participants that there was no such thing as a perfect treatment. Rather they had a more pragmatic desire to find a livable with solution. Carder et al. (2003) © 2016 John Wiley & Sons Ltd
reported similar observations in their study of 83 patients with established schizophrenia. They emphasized the impact of medication on patients’ self-identity. From talking to 16 bipolar patients about their beliefs on treatment, Clatworthy et al. (2007) elicited particular concern about the long-term consequences of taking medication. In a study of 44 prisoners’ experiences of taking antipsychotic medication, the authors observed how participants’ views about medication were influenced by their environment, in this case being in prison. Counter-intuitively prisoners viewed some side effects (mainly weight gain and sedation) particularly positively (Gray et al. 2008, Mills et al. 2011). Developing a better understanding of first-episode patients’ experiences of taking antipsychotic medication would inform and potentially improve the conversations clinicians have about treatment with the patients. We searched the literature and found no previous studies that have reported first-episode patients’ experiences of taking antipsychotic medication. The objective of this study was therefore to examine the experience of taking antipsychotic medication in patients with first-episode psychosis.
Methods We sought to interview patients in receipt of services from an early intervention team in the East of England. Our reporting strictly adheres to COREQ guidelines (Consolidated Criteria for Reporting Qualitative Research, Tong et al. 2007). The study was reviewed and approved by the Essex 2 Research Ethics Committee (10/H0302/16). The National Health Service Trust (service) gave approval for the study to be conducted.
Research team and reflexivity The research team comprised a carer (female), a clinician working in the early psychosis team (IM, a registered nurse, male) and academic researchers (KD, female/RG, registered nurse, male). The service user and carer had not previously been involved in a research project. IM was undertaking the project as part of his MRES (Masters in Research) and was a senior clinical manager working in mental health services. KD and RG were university-based PhD researchers who have previous experience undertaking qualitative research. Study participants were recruited by IM. Through team meetings and supervision of clinical staff members he had an understanding of the patients on the teams’ caseload. The majority of patients did not have a clinical relationship with IM prior to the start of the study. We acknowledge that the position of IM in the team may have created 109
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an (unintended) expectation in clinical team members to pressurize patients on their caseload to participate in the study. We explained to clinical team members and patients that participation was entirely voluntary. When explaining the study to potential participants, IM was introduced as a senior and experienced member of the clinical team who was doing this study as part of a funded research project.
Study design The methodological orientation that underpinned this study was that of thematic analysis. This method reports experiences, meanings and the reality described by participants (Braun & Clarke 2006). The method entails an integrative, interpretative process between the data and the researcher in order to complete the coding process. Analysis involves the careful reading of all the data, looking to identify meaningful units of text that are relevant to the area being researched and assigning these ‘codes’. Codes can then be combined to form an overarching metatheme.
issues they had about the study before being asked to provide written informed consent (by IM).
Setting A series of four focus groups – each attended by up to six young people – facilitated by IM and RG were planned. A community centre was booked for the meetings as this was felt to be a neutral location where participants would be more relaxed and comfortable in talking. We were acutely aware that attending a focus group, talking about psychosis and medication, might be a difficult and stressful experience for participants. However, we felt that there was merit to young people coming together to talk about their views, and by being in a group setting we would get more in-depth responses to questions (Morgan 1996). Focus groups are frequently used in health research (Lawton & Parker 1999) and have been used successfully with schizophrenia patients (Schulze & Angermeyer 2003). Individual interviews with a researcher in their own homes (or a place of their choosing) were offered to young people who said that they preferred face-to-face interviews to talk about their experiences.
Participant selection The study was conducted in Suffolk in the East of England, a rural county, with the city of Ipswich as the major urban area. The county has a population of 730 100, of which approximately 112 00 are in the target age group. The vast majority (95%) are of white ethnic origin. At the time of the study, the Early Psychosis Team provided a multidisciplinary service to the whole county and had 198 open cases. We aimed to involve 24 young people aged up to 35 years who were experiencing their first episode of psychosis and were currently receiving treatment from the early psychosis team. We adopted a purposive sampling strategy and aimed to ensure participants that had positive as well as negative experiences of treatment. Talking about psychosis and its treatment is sensitive, and we anticipated that potential participants might be reticent about consenting to participate. We estimated that we might need to ask three or four patients to get one to agree to take part in the research. The 18 care coordinators in the team were asked to help with recruitment. Each was invited to approach (face to face) four patients on their caseload, to explain the study, give them an information sheet and ask them if they were interested in participating. Care coordinators were also asked to consider if patients had capacity to consent. Those able to give consent were given a future opportunity to discuss any 110
Topic guide The research group developed a topic guide to support the interviewer in their conversations. Participants were asked to talk about their experiences – negative and positive – of taking antipsychotic medication. We deliberately wanted young people to talk about their negative experiences first to provide a cathartic space where they could talk about their pent up worries and concerns. The interviewer picked up on prompts and invited the participant to explore or elaborate on issues they identified. The topic guide was piloted by IM on two patients and some refinements were made based on this feedback. We intended to audio record interviews, but were aware that some participants might find this stressful and anxiety provoking. As an alternative we were prepared to manually record (in written note form) conversations.
Results A total of 20 young people were interviewed. None agreed to take part in focus groups. All the interviews were conducted individually in the patients’ own home. Also all participants, when offered, requested that their care coordinator was present during the interview. This may have impacted on participants’ perceived freedom to fully express their views. We acknowledge that participant responses may have been coloured by the presence of two © 2016 John Wiley & Sons Ltd
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health professionals in the room during the interview. Participants were generally anxious and worried about participating in the study. We repeatedly assured them that whatever they told us was confidential and would not be shared with the wider clinical team. Participant nervousness may have been because talking freely about medication was evocative and difficult. However, IM reported in their field notes that with the majority of participants there were illness-related factors, paranoia and suspiciousness, that seemed to underpin this anxiety. We were not successful in getting participants to check interview transcripts. Interviews were relatively brief, typically lasting between 20 and 30 min. No repeated interviews were conducted. We felt that having completed 20 interviews no new and relevant information was being generated from participants and we had achieved data saturation.
Description of the sample The people that took part in the study were young, on average in their mid-20s (26 years, SD = 3.4). Most were male (n = 14, 70%), white British (n = 16, 80%), single (n = 17, 85%) and living with their parents (n = 12, 60%). Half of the sample (50%) were unemployed, a third were in paid employment (n = 7, 35%) and 3 (15%) were students in full-time education. Participant had – on average – been in contact with the first-episode team for just under 2 years (20 months, SD = 10). The majority (n = 18, 90%) were prescribed low-dose oral atypical (risperidone, olanzapine, quetiapine) antipsychotic medication. Although we did record patients’ preliminary diagnosis, we do not feel that reporting it is contextually informative.
Data coding We followed Braun & Clarke’s (2006) process for thematic data analysis. Data were manually coded by IM and then reviewed by KD and RG. Preliminary themes were then derived from the data. From a total of 20 initial themes, these were refined through discussion with the wider advisory group to a list of six. We have used quotations from participants to illuminate each theme. Each quote has a participant number (P1–20). We also indicate the young persons age (in years) and their gender (M = male, F = female).
Theme 1: The drugs do work A number of participants talked openly about the positive effects of taking antipsychotic medication. Two patients © 2016 John Wiley & Sons Ltd
talked about how medication had completely got rid of their psychotic symptoms stating that the voices have gone [P13, F, 35] and I haven’t had any psychotic things [P15, M, 25]. Several patients talked about how medication had tempered the distress of psychosis [P17, M, 28]. Some participants talked about medication helping but found it hard to articulate how. One patient said, It can make me feel a bit better, I find it hard to describe what it does for me but if I stop it I feel really bad [P12, M, 30]. It seemed significant that several patients talked specifically about how medication stopped them doing things. I think my medication helps me not do what the voice is saying. [P3, F, 24] It helps me not to react as I was reacting before. It stops me doing some weird things. [P19, M, 23] I think I would get more horrible thoughts if I didn’t take my Clozaril, I think I would get them more often too. Before being on Clozaril I would self-harm. [P3, F, 24]
The comment from one participant was particularly illuminating because he talked about how he can only feel the benefit when I remember what it was like before [P9, M 24] perhaps drawing attention to how – as symptoms ameliorate – people forget the helpful effects of medication.
Sub-theme: effect on mood When patients were talking about the positive effect of antipsychotic medication the effect on patients’ mood emerged as an important sub-theme. Mood problems are common in people experiencing early psychosis. It was illuminating how participants described the effect of medication on their mood helps keep my mood in balance [P1, M, 23], keeps my mood stable [P10, F, 23] and when I didn’t have it I felt moody, it made me feel happier and cheered me up [P7, M, 20]. Mood and how medication impacts on mood can often be overlooked in clinical practice and we wondered if focusing on this might enhance clinical conversations about medication.
Theme 2: the drugs don’t work (as well as I’d like) Not all participants talked positively about antipsychotic medication. Several of the young people that we talked to told us how the drugs had no beneficial effects at all. They keep people on these drugs for too long, I am no better than when I was not on them. [P6, M, 22] I can not feel the injection. I get no effects from it. It does nothing to me. I don’t have a mental problem [P4, M, 27] 111
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Others expressed disappointment and a sense of frustration that medication had not worked as well as they had hoped and they continued to experience some symptoms. It doesn’t work as well as I hoped for, I still feel worried and paranoid and I still hear voices. I’m relying on something to help me get through although feeling it was not necessary to take it. [P6, M, 22] It could work better and keep me more stable. I still get anxiety and panic attacks and I still hear voices even though I take my medication. [P16, F, 27] They [antipsychotics] reduce symptoms, not get rid of them all together. [P20, M 27]
Theme 3: side effects Two of the patients we interviewed said that they did not experience any side effects from the antipsychotic medication they were taking I have no bad reactions, no side effects [P6, M, 22], I haven’t experienced any side effects [P16, F, 27]. The majority, however, described experiencing some side effects from antipsychotic medication. From our coding, sedation was by far and away the most commonly reported side effect.
Sub-theme: sedation Some participants found sedation to be particularly troubling. The first time after taking it I couldn’t get up for 12 h. Now 2–4 h after taking it I can get up but I can’t get out of bed. It makes me dark under my eyes. It makes me feel weak for hours. I have somehow to get used to it. [P1, M, 23] If you move about a lot you don’t notice it, if you take down time the effects seem to snowball and it gets on top of you. If you’re tired it makes you more tired. It’s like walking in water, you have to fight the resistance. [P2, M, 30]
Sedation was not consistently viewed negatively. Sleep was talked about as part of a process of healing from psychosis. For example, it [antipsychotic medication] gives me [a] nice sleep and relaxation when I take it [P1, M, 23] and feeling drowsy from the medication can help me feel better [P12, M, 30]. Sleep was also described as damping down the desire to get involved in difficult situations, for example one patient describe how the fact that they made me drowsy might have taken me out of situations that were dangerous. I was thinking and doing odd things. It took them out of the equation and allowed me to find new directions for myself [P12, M, 30]. 112
Sub-theme: other side effects Patients talked about experiencing a number of other side effects from taking antipsychotic medication. Weight gain seemed to be particularly troublesome for male participants in this study. One described how weight gain concerns me most and the fact that I can’t lose weight while I am taking medication [P17, 17, M]. This is perhaps surprising as clinicians – at least anecdotally – often dismissing weight gain as an issue that does not particularly trouble men. Atypical antipsychotics are – by definition – not meant to cause extrapyramidal symptoms. We were surprised that in a group of patients predominantly treated with these drugs several talked about not only experiencing these symptoms, but also that they did not seem to have been recognized by clinicians. For example, one participant talked about their experience in some detail risperidone made me step when I first went on it. Every time I stood up I had bad anxiety, my hands would sweat, it was all down to the risperidone. It took 6 months to go away. I still kept taking it because I didn’t want to relapse. I was so determined not to go back into hospital [P8, F, 25]. It is concerning that this young woman was prepared to tolerate clearly distressing side effects and continue medication because of her fear of relapse (and admission to hospital).
Sub-theme: not inconsequential side effects Participants also talked about side effects that might – from a clinical perspective – be considered insignificant. For example one patient said they had noticed body odour that I didn’t have before [P5, M, 27]. Clearly, a cause of considerable embarrassment that the clinical team had neither picked up on nor tried to do anything about it.
Theme 4: The indirect effects of medication Clinically antipsychotic medication is evaluated in terms of how it affects psychotic symptoms. Participants in this study talked a lot about what we have described as the ‘indirect effects of medication’. Sometimes these effects were positive. For example, one participant said I could do more when I had it. Made me feel like doing more stuff. When I don’t have it I get frustrated cause I can’t be bothered to do anything [P7, M, 20]. More often than not these effects were negative. Talking about their loss of motivation one patient said, Since I have been taking mediation I feel less enthusiastic about reading and making music. Less enthusiastic about writing my diary. I feel less enthusiastic about life [P5, M, 27]. A second young © 2016 John Wiley & Sons Ltd
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person talked about how medication had made it hard to have a conversation. It makes thoughts hard to get through. Things fell into place before. Now you have to search for them in your mind, drowsiness takes over. It is difficult to lead a normal conversation; it is more of struggle to find your words, you are trying to search your mind. I have needed to find new ways to communicate it is easier but not as I want it. I have to get used to it. [P2, M, 30]
Theme 5: Rage against the machine There was a strong desire from the young people we talked to for help that was not in the form of medication. Some, however, seemed to reticently accept that medication was a price that had to be paid to keep them well and out of hospital. From other participants there was a sense of frustration about the side effects they were forced to endure and the crushing effect medication had on their motivation and communication. There was one quote from a participant who powerfully and eloquently sets out his sense of rage and frustration about the central position medication has in psychosis treatment. It is the companies and the research. I was dead against them when I was first taking it because of how it made me feel. I started to accumulate reasons not to take it. I raged against the drug companies and their propaganda, making themselves the best option. [P2, M, 30]
Theme 6: The not trivial issues about medication Participants talked about a number of seemingly trivial issues that had a major impact on their perception of antipsychotic medication. For example, one patient talked about not taking a medication because the colour of the pill had no meaning to them. When the medication was changed to one that was a meaningful colour they were happy to take the pills. Along similar lines another patient talked about how the name of the company making the drug made them question taking medication. When I was unwell the color and the packaging of the medication concerned me. The color of the tablets and the word ‘Lilly’ on the packet were significant to me and off putting. The manufacturers name ‘Lilly’ said to me ‘you big Lilly’ and it made me decide to not take it. [P5, M, 27]
Several patients expressed dissatisfaction with the number and taste of tablets they were expected to take. One patient said, the taste was disgusting [P7, M, 20] another participant said they should make it in one tablet [P2, M, © 2016 John Wiley & Sons Ltd
30]. Often patients confused the number of tablets with the amount (dose) of medication they were taking. Participants generally talked about a reduction in the number of pills or the dose of medication positively. For example, As olanzapine is coming down I am clinging to the fact that I might be finally free of it [P2, M, 30].
Discussion The aim of this study was to examine patients with firstepisode psychosis experiences of taking antipsychotic medication. In total, we interviewed 20 young people. Perhaps our most important observation was that patients’ relationship with antipsychotic medication was complex. There was a palpable sense from the people that we talked to of an inner struggle with their need for medication; that medication was both good and a bad at the same time. Our observation is somewhat discordant with the work done by Carrick et al. (2004) who observed that patients described medication as either good or terrible. The different patient populations in the studies might explain this difference. However, we note that patients in both studies make similar comments about their struggle with medication. We felt that the young people we interviewed showed a sophisticated, pragmatic view of the role of medication in supporting their recovery. Carder et al. (2003) described a profound resistance to medication because it conflicted with their identity as a healthy person. We expected this reticence to medication to be heightened in the young people in this study. This did not seem to be the case. Most discussed how medication had beneficial effects, several reporting frustration that they still experienced some residual psychotic symptoms. That said there was a palpable sense from the young people we spoke to of a desire to get off medication as soon as possible. From our observations, we wonder if patients’ resistance to medication might develop over time because they develop a sense of treatment being imposed. This might then underscore the importance of joint working with clinicians to help young people consider, and learn from, their treatment choices both in the short and longer term. In this study, young people talked about practical issues that impacted on their views of medication. We described these as ‘the not so trivial issues about medication’. Often these were idiosyncratic, e.g. the name of the drug company (Lilly) evoking feelings of emasculation. To us this observation emphasized the need for clinicians to spend time listening to patients views and experiences, helping them to try and work out practical solutions to problems. There is good evidence that the complexity of a treatment regime impacts on patient 113
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adherence (Ingersoll & Cohen 2008). Our observations may encourage clinician to pay more attention to practical problems with medication in their day-to-day work with patients. Sedation was the side effect participants talked about most frequently. There is a popular perception – among clinicians – that sedation is particularly troubling for patients and a barrier to recovery (Miller 2004). As other authors have observed sedation – as a side effect – might be more complex than we instinctively think (Mills et al. 2011). Our observations may also suggest that sedation in patients with early psychosis might not always be a bad thing. Sleep disturbance is common in patients with psychosis. For some young people sedation was seen as beneficial, giving them a chance to rest and recover. Perhaps our observations highlight how – over time – what people need and want from medication can change. Patients need to be on the right medication at the right time. We argue that this might require clinicians to be more responsive to switching and changing patient’s medication than they perhaps currently are.
Study limitations There are a number of important limitations to our study that need to be considered when interpreting our findings. Our study was conducted in the East of England where there is little ethnic diversity; the majority of our sample was white British. Focusing on engaging a more ethnically diverse population would enhance future research. We intended – but were not able to – interview patients in focus groups. We felt that this environment would help generate a broader range of opinion. The young people in this study were resistant to this approach. Interviews were conducted on a one-to-one basis by a mental health professional. When offered the opportunity, participants asked that their care coordinator sit in on the interview. We wonder what effect the presence of two mental health professionals had on the participants’ ability to speak openly about their experiences of taking antipsychotic medication. Were we to repeat the study we might chose to work with peer researchers with the aim of providing patients with a safe space in which they could talk freely about their experiences. That none of the participants would consent to have interviews audio recorded is a further limitation. We explained to participants that we would like to audio record the conversation, but we would understand if they would rather than we made notes about what they said. It might be argued that to give people this option was a mis-
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take. Alternatively that we gave people a choice may have settled any anxiety they were feeling and resulted in more honest responses. The recruitment of participants to this study was challenging and may have produced a biased (or distorted) sample. Medication was a sensitive topic and the young people in the service were not enthusiastic about engaging in the study. It is possible that they were worried that disclosure of covert non-adherence may have resulted in being forced back to hospital or resulted in increases in medication doses. Perhaps patients’ reticence suggests that as health professionals we do not engage enough with patients in a collaborative way when discussing their medication.
Conclusion As far as we can determine, this is the first study to look at the experience of taking antipsychotic medication in young people with early psychosis. Were we to try to distil our observations into a simple phrase it might be ‘it’s complicated’. It has become fashionable to dismiss the part medication plays in supporting the recovery of people with early psychosis. The evidence of the efficacy of antipsychotics in this group of patients is far from compelling. Few of the young people we interviewed however dismissed medication as just plain bad. Their relationship with medication was temporal, sometimes side effects – particularly sedation – were perceived positively, seemingly providing respite and space to heal. At other times, side effects were a barrier to patients moving on with their lives. Many participants were frustrated that they continued to experience psychotic symptoms even though they were taking medication. There was also a desire among participants to try and get off medication as soon as possible. When we discussed stopping there was muted anxiety about the consequences. We feel that clinicians need to be more collaborative and responsive to discussing how medication choices with these young people. While this is easy for us to write it is much harder to realize in practice.
Acknowledgments The East of England Clinical Researcher Training Scheme supported this study. Ian Meek undertook the fieldwork for this study, but has subsequently retired from clinical practice. We are grateful to Ian Meek and to other members of the project steering group for their invaluable advice and guidance.
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Conflict of interest
honoraria and provided consultancy to AstraZeneca, Bristol-Myers Squibb, Wyeth, Jannsen Cilag, Eli Lilly and Co. and Otsuka Pharmaceutical Europe Ltd.
RG received no financial support from any pharmaceutical company in 2014 or 2015. Previously RG received
Bipolar Disorders 9, 656–664. doi:10.1111/
References
Lawton R. & Parker D. (1999) Procedures and the professional: the case of the British NHS1.
j.1399-5618.2007.00434.x. Crossley N.A., Constante M., McGuire P., et al.
Social Science and Medicine 48, 353–361.
Bola J., Kao D., Soydan H., et al. (2011).
(2010) Efficacy of atypical v. typical antipsy-
Antipsychotic medication for early episode
chotics in the treatment of early psychosis:
Miller D. (2004) Atypical Antipsychotics: Sleep,
schizophrenia. Cochrane Database of System-
meta-analysis. British Journal of Psychiatry
Sedation, and Efficacy. Journal of Clinical Psy-
atic Reviews 6, CD006374. doi: 10.1002/
196, 434–439. doi:10.1192/bjp.bp.109.066217.
14651858.CD006374.pub2.
doi:10.1016/S0277-9536(98)00345-1.
chiatry 6(suppl 2), 3–7.
Gray R., Bressington D., Lathlean J., et al. (2008)
Mills A., Lathlean J., Bressington D., et al. (2011)
Braun V. & Clarke V. (2006) Using thematic
Relationship between adherence, symptoms,
Prisoners’ experiences of antipsychotic medica-
analysis in psychology. Qualitative Research in
treatment attitudes, satisfaction, and side effects
tion: influences on adherence. The Journal of
Psychology 3, 77–101. doi:10.1191/147808
in prisoners taking antipsychotic medication.
Forensic Psychiatry & Psychology 22, 110–
8706qp063oa.
The Journal of Forensic Psychiatry & Psychol-
125. doi:10.1080/14789949.2010.509804.
Carder P.C., Vuckovic N. & Green C.A. (2003)
doi:10.1080/
Morgan D. (1996) Focus groups as qualitative
long-term medication use. Journal of Clinical
Group I.E.P.A.W. (2005) International clinical
Schulze B. & Angermeyer M.C. (2003) Subjective
Pharmacy and Therapeutics 28, 409–417.
practice guidelines for early psychosis. British
experiences of stigma. A focus group study of
doi:10.1046/j.0269-4727.2003.00511.x.
Journal
schizophrenic patients, their relatives and men-
Negotiating medications: patient perceptions of
Carrick R., Mitchell A., Powell R.A., et al. (2004) The quest for well-being: a qualitative study
of
the
antipsychotic
medication.
Psychotherapy: Practice
experience
77,
Theory, 19–33.
of
ogy
19,
335–351.
research. Sage, California, USA.
14789940802113493.
of
Psychiatry
187,
s120–s124.
tal health professionals. Social Science and
doi:10.1192/bjp.187.48.s120. Ingersoll K.S. & Cohen J. (2008) The impact of
Medicine 56, 299–312. doi:10.1016/S0277-
taking
medication regimen factors on adherence to
Psychology
and
chronic treatment: a review of literature. Jour-
Tong A., Sainsbury P. & Craig J. (2007) Consoli-
Research
and
nal of Behavioral Medicine 31, 213–224.
dated criteria for reporting qualitative research
doi:10.1007/s10865-007-9147-y.
(COREQ): a 32-item checklist for interviews
doi:10.1348/
147608304322874236.
Kessler R.C., Amminger G.P., Aguilar-Gaxiola S.,
9536(02)00028-X.
and focus groups. International Journal for
Clatworthy J., Bowskill R., Rank T., et al. (2007)
et al. (2007) Age of onset of mental disorders:
Quality
Adherence to medication in bipolar disorder: a
a review of recent literature. Current Opinion
doi:10.1093/intqhc/mzm042.
qualitative study exploring the role of patients’
in
beliefs about the condition and its treatment.
YCO.0b013e32816ebc8c.
© 2016 John Wiley & Sons Ltd
Psychiatry
20,
359–364.
in
Health
Care
19,
349–357.
doi:10.1097/
115
