Radical Psychology
2006, Volume Five


"They will find us and infect our bodies":

The Views of Adolescent Inpatients Taking Psychiatric Medication


Brenda LeFrancois

Keywords: child psychiatry, child psychopathology, pharmaceuticals, medication, participation, children, adolescents, child and adolescent mental health

Introduction

This paper details some of the findings from a study conducted at an adolescent inpatient unit in the United Kingdom, which explored the lived experiences of the adolescents. The adolescents' perspective on their use of psychiatric medication as treatment in the inpatient unit is considered. Issues relating to social control as well as physical, emotional and intellectual contamination are discussed.

Background

With the interest generated in user involvement in adult mental health services over the last 15 years in the UK, and its impact on policy development (DoH, 1999), the same principles of participation have been recently embedded within the National Services Framework for Children (DoH, 2004a; DoH 2004b; DoH 2004c; DoH 2003), which was developed in consultation with child and adolescent service users (Baruch and James, 2003). In particular, mental health services are now required to work in ‘partnerships' with children, young people and families by regularly obtaining their views regarding service provision and service development. Moreover, their views need to be taken into account in decision making regarding their treatment and care. In addition, there has been a growing body of research exploring children and adolescents experiences of mental health services from their perspective (LeFrancois, Forthcoming; LeFrancois, Under Review; Claveirole, 2004; Carroll, 2002; Laws et al, 1999; Laws, 1998; Spandler, 1996; Farnfield, 1995) as a form of user involvement both in research and in mental health services.

However, the specific issue of medication use has been detailed in only two of these studies. Farnfield (1995), interviewing 10 children and adolescents between the ages of 7-18 regarding their experiences of psychiatric medication, documented that 6 felt their medication was helpful whilst 4 felt the medication was not helpful. In Laws (1998) one of the recommendations brought forward by the adolescents was for mental health services to provide a range of treatment alternatives, rather than strictly medication. Furthermore, the adolescents mentioned concerns regarding becoming dependent on the medications and the experience of side effects. Similarly, in Laws et al. (1999) the adolescents expressed concerns about dependency on the medication, the experience of side effects as well as not being given sufficient information about the medication by the practitioners. The recommendations resulting from this research included asking practitioners to listen to the adolescents views when making decisions around medication and to develop medications that do not have as many side effects.

Setting and Method

The research was conducted at an adolescent inpatient unit in the UK. This inpatient unit provides beds for ten adolescents, aged 11 to 18. In total, 14 adolescents were resident in the inpatient unit during the course of the study; 11 adolescents were involved in the research. The adolescents involved in the study had been given diagnoses ranging from depression, eating disorders, obsessive compulsive disorder, ‘queried psychosis' and high risk for self-harming and/or suicide. Most of the adolescents were given more than one of the above diagnoses. All of the adolescents were voluntary patients, having been admitted by their parents. The practitioners involved in the treatment and care of the adolescents ranged from mental health nurses and support workers within the inpatient unit as well as psychologists, psychiatrists, social workers and community psychiatric nurses (CPNs) within the day-patient unit.

The study was conducted over a four month period, in which the researcher engaged in an ethnographic exploration of the lived experiences of the adolescents in the inpatient unit. This involved the researcher immersing in the culture of the patients and participating with them in their daily and nightly routines in the hospital. Given the differences in age between the researcher and the adolescents, immersing in their culture was not a straightforward activity. Trust was gained by detailing the nature and purpose of the research, without leaving any hidden agendas, and by spending time with the adolescents while forging a distance with the staff and other practitioners. In the end, the adolescents indicated that they viewed the researcher not as peer or as a practitioner but rather like an older sibling. The researcher became confident that the trust of the adolescents had been gained once the researcher began to be invited regularly into peer group conversations about topics that they hid from the practitioners. That is, the world of the adolescents was opened up to the researcher at the adolescents' invitation. Data was collected in the form of field notes of observations made by the researcher, notes taken directly from patient files and policy documents, as well as by videotaping individual and group interviews with the adolescents and the practitioners. The interviews ranged from semi-structured to unstructured, allowing the adolescents to discuss issues that they felt were important. Moreover, the adolescents engaged in some group interviews independent of the researcher. That is, the adolescents videotaped themselves engaging in group conversations with each other without the researcher's presence in the room. This was done so as to allow the adolescents the opportunity to discuss issues in their own way, without the possibility of bias from the researcher in terms of choosing topics of discussion and influencing the form and/or content of the discussion. The practitioners were interviewed, individually and in groups, at the end of the research with a semi-structured format based on topics deemed important by the adolescents as well as based on topics arising from observations made by the researcher.

Findings

These findings explore the adolescents' perspectives on the use of medication in their treatment obtained from interviews. Moreover, the issues presented by the adolescents, in relation to their medication, are reinforced with additional data based on the researcher's observations and the examination of patient files. Findings relating to the experience of participation rights and the adolescents' perspectives on other forms of their treatment and care are detailed elsewhere (LeFrancois, Forthcoming ; LeFrancois, Under Review).

All of the adolescents in the study were prescribed medications to treat their mental health problems. The types of medication they were receiving ranged from anti-depressants, anti-anxiety medication, anti-psychotic medication and sleeping tablets, with many of the adolescents taking a cocktail of more than one. All of the adolescents placed importance on and addressed the issue of their medication with the researcher, with some holding very strong opinions about their use.

Many of the adolescents indicated experiencing side effects from their medication. These side effects ranged from increased sleepiness, inability to sleep, physical shaking, nausea, hyperactivity, feeling ‘high', inability to react emotionally, inability to react verbally, inability to concentrate, feeling ‘doppy', feeling unprovoked anger and agitation. Also, some of the adolescents indicated that there was a similar reaction to taking some of their medication as there is to taking illegal drugs, such as ‘speed'. At times, the potential for side effects from taking medication was used as a form of ridicule toward the adolescents by the inpatient practitioners. For example, consider the following field note taken by the researcher during a therapeutic activity group:

Morning activity group: skittles. ____________ (adolescent) was singing and laughing during the group. One of the staff said: "What? Did you take your happy pills this morning?".

The effect of this comment was to change the way the adolescents were enjoying – or at least outwardly displaying their enjoyment of – the skittles game. As was explained to the researcher by the some of the adolescents, the suggestion that their behaviour may be the result of the side effects of medication, rather than non-medication induced enjoyment, left some of the adolescents fearful of displaying outward behaviour that may be described as outside of their control and/or intentions. At other times, the side effects of medication were dismissed by the inpatient practitioners as irrelevant, such as when the adolescents may indicate that they feel too tired or ‘doppy' to engage in group activities.

Conversely, four adolescents mentioned experiencing no effects whatsoever from their medication. That is, they did not experience any side effects or any benefits to their mental health. During individual interviews with the researcher, some of the adolescents made the follow comments with respect to the lack of effect and/or placebo effect of medication:

I'm very cynical about pills and I will continue to be ‘cos I never in myself felt any different with or without them.

They started me on anti-depressants again . . . I said "definitely no drugs" because they already put me on them the first time I took the overdose and it didn't help.

They're crap (anti-depressants) . . . 'cos I reckon medication is in the mind . . . Well, if you believe it's going to work, then it will work but if you don't believe in medication then its not going to work.

Only one adolescent mentioned finding the medication helpful in terms of improving mental health. During an individual interview with the researcher, this adolescent described the effects of the medication thus:

It's an anti-depressant . . . I'm still on it now but yeah it helps. It lifts me a little. I'm not always constantly down but now I just get spells but I'm still not as happy as what I was before but sometimes I can be quite happy and other times I can be quite down.

Some of the adolescents indicated that they were not sure whether the medication was having an effect on their mental health but expressed concern that the medication may provide only a temporary benefit to their mental health. For example, the following discussion took place between two adolescents during an independent group interview in which the researcher was not present:

Adolescent #1: I reckon they only put you on medication so that when you start to feel better in yourself they can discharge you. And, one day they are going to take you off the medication so, and you are probably going to go back to the way you used to be.

Adolescent #2: I've been on medication for about five months. They won't take me off anti-depressants ‘cos they reckon that's what's helping me. As soon as I do come off of them, if that's what's happening, I'm just going to go ppplloooooo (motions downward). (Cited in LeFrancois, Under Review).

Adolescent #1: Are you scared about that?

Adolescent #2: In a way, yeah.

In this way, these adolescents felt they may have to remain on the medication for the rest of their lives in order to avoid becoming unwell. However, at the same time they were uncertain as to whether or not they should buy into the practitioners' insistence that the medication was responsible for them feeling better. This left them feeling insecure and unsure about the actual state of their mental health, the need for medication, the possibility of alternative forms of treatment and/or the possibility of not needing any treatment.

Other adolescents mentioned not wanting to be on medication at all. However, as detailed elsewhere (LeFrancois, Under Review), they are not given a choice. In addition to the experience of side effects, the lack of effectiveness of the medication and the possibility of becoming dependent on the medication, another reason given by the adolescents for not wanting to take psychiatric medication stemmed from a fear that the medication may alter their identity. During an individual interview, an adolescent explained his reasons for wanting to come off medication thus:

(S/he) (psychiatrist) sorts out my medication and stuff, which I've had a long ongoing battle with (her/him). I'm against any form of medication ‘cos . . . I don't like to think of it as brain chemicals all in the wrong. That makes me feel that it's out of my control and medication put forward to solve those problems, again is out of my control. I don't like, you know, how these things can alter the way I think and the way I am…It's an anti-psychotic. It's supposed to change thought patterns, or alter, that's what I've been told…I don't like the idea that it changes who I am. They say they are fine but I don't want to lose something that is me…I think it's, I mean, I don't think that medication is the answer and I think people should be given a choice whether we want medication or not. I mean, it's your body and they shouldn't threaten you and things like that. (Cited in LeFrancois, Under Review)

Despite repeated efforts to have their medication reviewed and stopped, the adolescents felt as though their arguments were neither listened to nor taken seriously by the practitioners. Moreover, there is a sense that the adolescents are forced to comply with the decision to take the medication because refusing to do so will lead to certain consequences. These consequences not only involve the taking away of privileges but also involve an abuse of power on the part of the practitioners.

Moreover, the adolescents have been repeatedly forewarned by the practitioners of the rebound effect of stopping their medication. This notion is reinforced when an adolescent stops taking their medication and experiences adverse symptoms. One adolescent explained, during an individual interview with the researcher, the issue of refusing to take medication, experiencing rebound effect and being faced with consequences thus:

I have refused several times . . . They (practitioners) put pressure on me. They put pressure on me from the start. It made me feel worse when I refused…When I stopped taking them my body felt like I was really dizzy and my whole body felt like it was throbbing. It was uncomfortable . . . It was __________ (case manager) talking to me, and saying that if you don't take your medication it is not complying…it's non-compliance, and the people upstairs were considering my position . . . The high people. Dr. _________(Psychiatrist). They said they can chuck me out and then later, when I refused the chlorazin, Dr. __________ (Psychiatrist) said that if I refuse medication, (they) wouldn't let me go home weekends. So I started to take them.

In addition, all of the adolescents were aware that they were being monitored closely by the inpatient practitioners in order to ensure compliance in terms of taking their medication. It is interesting to note that the one adolescent who indicated to the researcher that she felt the medication was helpful in some way, was also being monitored and held in suspicion by the practitioners. The following note was written in this adolescent's patient file:

Please note - __________ (adolescent) needs to be watched vigilantly when taking meds – she may not be swallowing.

In this way, even the most compliant of patients are subjected to the social control inherent within the inpatient unit. The question of consent and working in partnership with the adolescents is mired with practitioner suspicion and the exercise of power through a coercive practice that is antithetical to children's rights and user involvement in mental health services.

During an independent group interview, in which the researcher was not present, two adolescents concluded their discussion of medication and summed up the issues raised by the other adolescents by creating, impromptu, the following song:

 ___________ (adolescent) (singing):

"I'm all friendly, I've got the medication,
They will find us, they will infect us,
Doo doo doo, doo doo doo
They will find us, if you want to get high,
They will find us, if you want to get high,
They will find us, and infect our bodies,
I don't think I really need it,
Just need to go somewhere else and sort it out.
Doo doo doo, doo doo doo
Medication does not work,
Neither does their treatment,
‘Cos at _______ (inpatient unit) it is so crap,
Boring, boring,
They make you get up in the morning,
We are on meds but we don't need it,
So come on just join the club, _______ (inpatient unit) is like a youth club".

Discussion
 
In his seminal study into life within ‘total institutions', Goffman (1961) discusses the issue of the ‘mortification of self' that inevitably occurs within psychiatric hospitals thus:

In addition to personal defacement that comes from being stripped of one's identity kit, there is a personal disfigurement that comes from direct and permanent mutilations of the body such as brands or loss of limbs. Although this mortification of the self by way of the body is found in few total institutions, still, loss of a sense of personal safety is common and provides a basis for anxieties about disfigurement. Beatings, shock therapy, or, in mental hospitals, surgery – whatever the intent of staff in providing these services for some inmates – may lead many inmates to feel that they are in an environment that does not guarantee their physical integrity…(I)n some total institutions the inmate is obliged to take oral or intravenous medications, whether desired or not, and to eat his food, however unpalatable. When an inmate refuses to eat, there may be forcible contamination of his innards by ‘forced feeding' (pp. 30 -35).


The fears expressed by some of the adolescents around medication use and the loss of identity is striking in its capturing of what Goffman (1961) has referred to as the mortification of the self. The lack of choice, the monitoring for compliance and the punishments levied toward those who refuse, ensure the ‘forced feeding' of medication, resulting ultimately in the physical ‘contamination' of the body – as evidenced in some types of side effects - as well as the altering of the emotional and intellectual functioning of the mind. Moreover, this process of the mortification of the self through the use of medication, becomes overwhelming in its permanency for those who will feel obliged to remain on the medication after discharge from hospital – for life even - so as to avoid becoming ‘ill' again. The loss of identity, in order to avoid experiencing the self as outside the norm in terms of diagnosed thoughts and behaviour, becomes permanent. The social control function of the administering of medication in the psychiatric hospital can be seen in broader terms than merely controlling the thoughts and behaviours of the adolescents while hospitalised. This control is maintained upon discharge, along with the compliance of the adolescents due to the fears instilled in them regarding rebounding, and potentially well into and throughout adulthood. In this way, the line from the adolescents' song "They will find us and infect our bodies" captures the essence of the social control and contamination aspects of the mortification of the self.

In terms of the immediacy of the lived experiences of the adolescents on the inpatient unit, they describe what can only be seen as a no-win situation for them. If they refuse to take their medication they are deemed non-compliant and made to suffer individually tailored consequences, such as the taking away of much desired privileges. However, as has been demonstrated, if the adolescents do take their medication, they become subjected to the ridicule of practitioners in pointing attention to the outward display of side effects. Given that the adolescents in this study were all voluntary patients – or perhaps best described as ‘informal' patients given that their parents ‘volunteered' them for admission (Coppock, 2002) – they should have been given a choice in terms of treatment options and the practitioners should have gained informed consent from them. Clearly, the practice, as well as the general culture of care, in this inpatient unit emphasises social control rather than policies relating to children's rights (LeFrancois, Forthcoming; LeFrancois, Under Review). Moreover, the National Service Framework commitment to user involvement and creating partnerships with adolescents is replaced in practice with an environment of suspicion and coercion. More accountability is required of practitioners working with children in mental health settings, in terms of gaining informed consent and detailing all of the alternative treatments tried prior to the prescribing of medication. Moreover, the prescribing of anti-psychotic medication to adolescents, particular those who have not been given a firm diagnosis of psychosis, should be banned (Martensson, 1998). If the mental health system is engaging in the widespread ‘infection' of their patients through the use of a variety of psychotropic medication, as described by the adolescents in this study, it must find a way to ‘de-contaminate' those people previously and currently under its ‘care' and provide alternate treatments that bolster the physical integrity and self-defined identity of those seeking support for their mental health. In short, the system – and all those working within it – must be answerable to the adolescents with whom they should be forming ‘partnerships' in care.

As can be seen in this study, the adolescents' response to medication mirrors that experienced by adults (Faulkner and Layzell, 2000; Breggin and Cohen, 1999; Lehman, 1998; Martensson, 1998; Breggin, 1991). In particular, as noted in the studies by Laws (1998) and Laws et al (1999), the adolescents in this study experienced a range of side effects from the medication and they also express concerns regarding the ‘medication trap'. The ‘medication trap' – wondering if any improvements in mental health are from taking the medication or from other causes – and the subsequent decision to remain on medication in order to avoid the possibility of becoming unwell is discussed in detail in the adult literature (see, for example, Breggin and Cohen, 1999; Martensson, 1998). Moreover, as also noted in Farnfield (1995), the adolescents' concerns in this study that psychiatric medication is ‘all in the mind', is a concern highlighted in Breggin and Cohen (1999) where they show that there is no clear research demonstrating that psychiatric medications are more effective than a placebo. The similarity in experiences is important to note given the lack of involvement of children and adolescents within the psychiatric survivor movement in the UK (and elsewhere). The survivor movement needs to take up the cause of child and adolescent users of mental health services, including finding ways to make the movement accessible to young activists and creating a space for young voices to be heard along with those of adult survivors. This is particularly important given the extent to which children and adolescents are being ‘voluntarily' subjected to a coercive system of treatment and the abuse of power by practitioners as well as the current and potentially lifelong implications related to the experiences of the ‘medication trap'.

Given the lack of accountability of mental health practitioners working in child and adolescent mental health settings, the relative voicelessness of children and adolescents and the limited amount of research that has been conducted in this area, more research is needed that explores the experiences of children and adolescents taking psychiatric medications. Moreover, more research is needed that employs participatory approaches such as the involvement of children and adolescents as researchers (Laws et al, 1999), particularly in the analysis of data. Allowing children and adolescents to play such a role within research will provide for the meaningful relaying of their voices without relying on an adult interpretation of their words. That is, research conducted by adults exploring the experiences of children and adolescents leads to an ethical dilemma whereby the researcher must decide to engage in their own interpretation/analysis of the data or merely engage in a descriptive recounting of the data. This was the case in this study, as the hospital research ethics committee - the gatekeepers of access to the research setting – denied the opportunity for prolonged access to the adolescents in this study, which was necessary in order to allow the adolescents to participate in the analysis of data and the dissemination of the research. It is hoped that researchers will continue to make attempts to break down barriers and engage in or facilitate participatory research with children and adolescents. In addition, children and adolescents should be encouraged to tell their stories in other formats, such as the writing of autobiographies (see, for example, Michener, 1998). In many respects, the best way to give a voice to those who are voiceless is to allow them to speak for themselves.

References

Baruch, G. and James, C. (2003). The National Framework for Children, Young People and Maternity Services: The Mental Health and Psychological Wellbeing of Children and Young People – Report from Consultation with Users of Child and Adolescent Mental Health Services. London: Department of Health.

Breggin, P.R. and Cohen, D. (1999). Your drug may be your problem: how and why to stop taking psychiatric medication. New York: Perseus Books.

Carroll, J. (2002). Play therapy: the children's views. Child and Family Social Work, 7, 177-187.

Claveirole, A. (2004). : challenges of research with adolescent mental health service users. Journal of Psychiatric and Mental Health Nursing, 11, 253-260.

Coppock, V. (2002). Medicalising children's behaviour, in B. Franklin (ed.), The new handbook of children's rights: comparative policy and practice. London: Routledge.

DoH (2004a). National Service Framework for Children, Young People and Maternity Services – Core Standards. London: HMSO.

DoH (2004b). National Service Framework for Children, Young People and Maternity Services – The Mental Health and Psychological Well-being of Children and Young People. London: HMSO.

DoH (2004c). National Service Framework for Children, Young People and Maternity Services – Medicines for Children and Young People. London: HMSO.

DoH (2003). Getting the Right Start: National Service Framework For Children – Standard for Hospital Services. London: HMSO.

DoH (1999). National Service Framework for Mental Health. London: HMSO.

Faulkner, A. & Layzell, S. (2000). Strategies for living: A report of user-led research into people's strategies for living with mental distress. London: Mental Health Foundation.

Farnfield, S. (1995). Research into the views of children, young people and their carers, of mental health services. A report to the Southampton and South West Hampshire Health Commission.

Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. London: Penguin Books.

Laws, S. (1998). Hear me! Consulting with young people on mental health services. London: The Mental Health Foundation.

Laws, S., Armitt, D., Metzendorf, W., Percival, P., & Reisel, J. (1999). Time to listen: Young people's experiences of mental health services. London: Save the Children.

LeFrancois, B.A. (Forthcoming). Children's participation rights: voicing opinions in inpatient care. Child and Adolescent Mental Health.

LeFrancois, B.A. (Under Review). "You don't have to enjoy it; you just have to do it": Participation and mental health services. International Journal of Children's Rights.

Lehmann, P. (1998). Withdrawal symptoms connected with cessation of psychiatric drugs, in L. Martensson (Ed.) Deprived of our humanity: The case against neuroleptic drugs. Geneva: The Voiceless (Mouvement Les Sans-Voix) and Association Ecrivains, Poetes & Cie.

Martensson, L. (1998). (Ed.) Deprived of our humanity: The case against neuroleptic drugs. Geneva: The Voiceless (Mouvement Les Sans-Voix) and Association Ecrivains, Poetes & Cie.

Michener, A.J. (1998). Becoming Anna: The autobiography of a sixteen-year-old. Chicago: University of Chicago Press.

Spandler, H. (1996). Who's hurting who? Young people, self-harm and suicide. Manchester: 42nd Street.

Biographical note:

Brenda A. LeFrancois can be contacted at the School of Social Work, Laurentian University, Ramsey Lake Road, Sudbury, Ontario, Canada, P3C 2Y6 or by email at blefrancois@laurentian.ca

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