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.
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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