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Australian Occupational Therapy Journal (2005) 52, 243–250 doi: 10.1111/j.1440-1630.2005.00504.

Research Article
Blackwell
Oxford,
Australian
AOT
2005
0045-0766
unknown
52 Blackwell
UK
Publishing,
2005
Occupational
Publishing
Ltd.Therapy
Asia PtyJournal
Ltd Literature
Lloyd etReview
PERCEPTIONS
C. al. OF SOCIAL STIGMA

Perceptions of social stigma and its effect on interpersonal


relationships of young males who experience a psychotic
disorder
Chris Lloyd,1 Dan Sullivan2 and Philip Lee Williams3
1Division of Occupational Therapy, University of Queensland, St Lucia, 2Integrated Mental Health Service,
Gold Coast Hospital, Southport and 3Princess Alexandra District Health Service, Woolongabba, Queensland,
Australia

Background: People with psychotic disorders experience (Gilbert, Miller, Berk, Ho & Castle, 2003). People with
high levels of disability and impairment as a result of their more severe symptoms, and symptoms such as dis-
illness. Difficulty in the area of social relationships poses organised behaviour and flat affect, and poorer social
a substantial problem with the majority of people with skills are more likely to engender more negative
psychosis being socially isolated. Many of them experience responses from others (Dickerson, Parente & Rignel,
an unmet need for services. 2000; Ertugrul & Ulug, 2004). In response to such situ-
Methods: A focus group was conducted with the aim of ations, people internalise the devaluing by others and
investigating the perceived experience of six young men develop strategies such as social withdrawal to avoid
who had a psychotic disorder to gain an understanding of the rejection they anticipate (Ertugrul & Ulug). This in
the impact this had on interpersonal relationships. turn reduces the stigmatised person’s range of social
Results: The major themes identified were: (i) a signifi- contacts, thereby handicapping social adaptation and
cant decrease in the internal and external control of one’s delaying recovery (Ertugrul & Ulug). In the Australian
life at the onset of illness; (ii) the effects of labelling and context, there is a significant gap in terms of service
stigma on interpersonal relationships; and (iii) the change delivery addressing psychosocial disability, with the
in self perception that these effects bring. majority of service users not receiving rehabilitation
Conclusion: The implications of the findings for rehabilita- (Gilbert et al.). Listening to identified needs of individ-
tion interventions are presented, specifically psychosocial group uals involved in mental health services is considered
interventions addressing interpersonal relationships. important in the subsequent development of services
(Barnes & Wistow, 1994). This includes making them
KEY WORDS interpersonal relationships, psychotic dis-
more responsive to the needs and preferences of
orders, social skills, stigma.
those who use them. Additionally, service users may
be empowered in decision-making about the design,
Introduction implementation, and review of these services (Barnes
& Wistow). This has direct implications for designing
Psychotic disorders are complex illnesses often char-
services that address unmet needs and the quality of
acterised by episodes of relapse and often only a partial
these services.
return to full functioning (Angell & Test, 2002; Penn,
This article describes a qualitative research project
Kolmaier & Corrigan, 2000). Psychosocial disability is
that was carried out to explore the difficulties of
prevalent among people with psychotic disorders
living with a mental illness and its effects on inter-
personal relationships.

Chris Lloyd PhD; Senior Lecturer. Dan Sullivan CN, BN,


MMHN; Acting Nursing Unit Manager. Philip Lee Williams Literature review
BOccThy; Occupational therapist. Impact of psychosis
Correspondence: Chris Lloyd, Division of Occupational Typically, psychotic disorders occur during late ado-
Therapy, University of Queensland, St. Lucia, Queensland lescence and early adulthood, an important period for
4072, Australia. Email: clloyd@shrs.uq.edu.au
emotional and social development. The onset of a
Accepted for publication 21 April 2005. psychotic episode can lead to disability and disadvan-
© 2005 Australian Association of Occupational Therapists tage through the disruption of educational, vocational
244 C. LLOYD ET AL.

and social pursuits (McGorry & Edwards, 1997). There These consequences may increase stress levels in the
is a high probability of further episodes occurring, lives of persons with a psychotic disorder, which could
where function and personality may be damaged, which lead to an increased potential for relapse and rehospi-
may worsen over time (Dickerson et al., 2000). Jablensky talisation. Stigma therefore has important implications
et al. (1999) found that people with psychotic illnesses for the person with a psychotic disorder and their
were seriously impaired in their ability to function in integration into the community (Penn et al., 2000).
everyday social and occupational domains. The results It has been found that interpersonal factors, such as
of a study conducted by Ertugral and Ulug (2004) overall social skill, negative symptoms and perceived
found that people who reported more perceived strangeness, may contribute to stigma (Penn et al., 2000).
stigmatisation had more severe symptoms than the Ertugrul and Ulug (2004) found that individuals who
people who did not perceive stigmatisation. They also reported perceived stigmatisation had more severe
found that people reporting stigmatisation were symptoms than individuals who did not perceive
significantly more disabled than the group negative stigmatisation. People with schizophrenia have sig-
for perceived stigmatisation. nificant deficits in social skills, which may produce
uncomfortable and or aversive interactions with others
Medication and psychosocial (Ertugrul & Ulug). By interrupting this cycle, the
interventions adaptive abilities increase and the disability of these
Angell and Test (2002) stated that despite the evidence individuals decrease; this was found in the study by
that people with severe mental illness experience Ertugrul and Ulug. Social skills training may, in addi-
impairments in social relationships, there is little con- tion to improving social behaviour, have the potential to
sensus about what may be done about it in the clinical indirectly impact on psychiatric stigma (Penn et al., 2000).
services context. From their study, they suggested This issue can best be addressed by designs, which
that psychopharmacological and psychosocial inter- assess perceived stigma prior to, and following, social
ventions aimed at the mitigation of symptoms facili- skills training (Penn et al.).
tate the development of reciprocal relationships and
contribute to decreased levels of loneliness. Falloon, Social skills
Held, Roncone, Coverdale and Laidlaw (1998) in their In a previous study by Roder et al. (2002), social skills
study concluded that treatment for psychotic disorders training was shown to be an effective intervention for
is best provided by integrating specific psychosocial individuals experiencing disability associated with
intervention strategies in addition to the optimal use mental illness. Skills building involves learning and
of medication. The introduction of newer antipsychotic practising activities that enable individuals to acquire
drugs may improve the effectiveness of psychosocial the skills that are required to meet the interpersonal
treatments (Marder, 2000). Compared to traditional and coping demands of community living. Ihnen, Penn,
medications, the atypical antipsychotic medications have Corrigan and Martin (1998), in their study, investi-
superior efficacy with respect to positive symptoms, gated the relationship of social perception to social
some benefit on cognitive performance, and fewer side- skills in those with schizophrenia. Correlational anal-
effects (Marder). yses revealed that the self-ratings of social skills had
the most consistent relationship with social skills
Stigma and self-concept among the social perception measures, even after
According to Caltraux (2003), stigma is socially con- controlling for symptomatology and subject demo-
structed and is often formed subtly, as stereotyping and graphics. They suggested that the ability of indivi-
prejudices gradually become an accepted part of a duals to perceive his or her own social behaviours
cultural or social belief system. The stigma surround- have important functional consequences in account-
ing mental illness has marked effects on the psycho- ing for social dysfunction (Ihnen et al., 1998). In their
logical well-being and life satisfaction of people with a study, Roder et al. found an improvement in social
mental illness (Caltraux). This is manifested in a number functioning following participation in a training
of ways, ranging from limited social and vocational program. They also found that participants showed a
opportunities to its negative effect on the self-concept significant reduction of both negative and positive
(Angell & Test, 2002). An increase in positive func- symptoms. Roder et al. recommended that social skills
tioning was associated with a downturn in subjectively training be conducted over extended periods of time.
assessed social functioning, that is, satisfaction with Falloon et al. (1998) recommended that skills training
social relationships and loneliness over the 6-month strategies include role rehearsal, constructive coach-
period (Angell & Test). Some people internalise the ing and real-life practise. They suggested that the best
stigma whereby he or she accepts diminished expec- results occur when skills training is targeted to each
tations both for and by him or herself (Caltraux). person’s chosen goals.
PERCEPTIONS OF SOCIAL STIGMA 245

inpatient unit (range = 1–20 times, mean = 10.5 times


Occupational therapy and group on average), were receiving case management services,
interventions and were registered with the rehabilitation service. Eight
According to Bustillo, Lauriello, Horan and Keith (2001), young men had been referred to the group program,
social skills training uses learning theory principle Kick ‘N’On, a social skills group. The development of
to improve social functioning by working with clients this group has previously been reported (Lloyd et al.,
to remediate problems in activities of daily living, 2004). This program customarily commences with a
employment, leisure and relationships. Occupational focus group during the first session to gain an under-
therapists working in mental health rehabilitation set- standing of the participants’ experiences. This infor-
tings frequently utilise group interventions to enable mation is then used to guide the development of the
consumers to develop their capacity despite the subsequent group sessions.
existence of psychiatric morbidity (Albiston, Francey
& Harrigan, 1998; Lloyd, Williams & Sullivan, 2004). Data collection
Consumers require assistance to master those skills A qualitative approach was selected as the most
that relate to their own special needs. Skills training appropriate method for the present study because the
needs to be focused on realistic life circumstances that emphasis was on understanding the lived experience
consumers are likely to encounter in their daily living of the young men. According to Seale and Barnard
(Lloyd et al.). The social problem-solving model has (1998), ‘Individuals cannot be separated from the
resulted in the acquisition of skills, and it is the environment in which they function; the human
approach with some evidence that suggests that experience needs to be studied as it occurs’ (p. 9).
there should be a generalisation of skills to community Focus groups aim to capitalise on the interactions that
functioning and of effectiveness in some routine occur within the group and are useful for exploring
clinical settings (Bustillo et al.). Mental health rehabili- poorly understood areas and attitudes. Using a focus
tation requires that consumers are involved in the group enables the researcher to interact with participants
design of their own rehabilitation plan (Bachrach, 2000). to clarify responses, and follow up questions (Seale &
An essential focus is on meaningful participation by Barnard).
consumers in such areas as service planning and
delivery (Australian Health Ministers, 2003). Bearing Procedure
this in mind, it is necessary to work out practical ways Ethical approval was obtained from the Hospital Ethics
that consumers may be involved in their rehabilita- Committee. Young males referred to the rehabilitation
tion plan and program. One such useful strategy is to team had their areas of need identified before being
hold a focus group to determine the needs of consum- invited to join the social skills group program. They
ers and use this information in the development of a shared in common the goal to meet and socialise
group program based on the areas of need that are with other people, particularly girls. The offer took the
identified (Ivanoff, 2002). form of a letter inviting participation and was fol-
lowed up with a phone call to establish if the person
was intending to join the group (six people expressed
Aim of the study their intention of participating in the program). This
The aim of this study was to explore the perceived all took place as part of the usual clinical practice.
difficulties of living with a mental illness and its effect Consumers attending the group were invited to par-
on interpersonal relationships. ticipate in the focus group investigation. If interest was
expressed, an information sheet was provided outlin-
ing requirements for participation. Consumers were
Method provided with the opportunity to sign an informed
Participants consent form. It was clearly explained to consumers
Six young men agreed to take part in the present that choosing not to participate in the research would
study. They were the young men who were referred in no way compromise their treatment or opportunity
to the social skills training program. As is usual in a to participate further in the group.
community-based rehabilitation program, the majority The focus group was 1 h in duration and was con-
of participants were male. The young men were under ducted by two male staff members, an occupational
30 years of age (range = 18–30 years, mean = 25 years), therapist and a mental health nurse who were the
were Australian born, and were in receipt of a disability facilitators of the young men’s group. This was held
support pension. They all had a diagnosis of a psychotic during the first session of the scheduled group pro-
disorder (schizophrenia or schizo-affective disorder), gram. The idea behind holding the focus group at
had previously been admitted to the psychiatric this point was that the insights gained from the young
246 C. LLOYD ET AL.

men would be useful in guiding the subsequent


development of the group sessions. The focus group Results
was audiotaped and field notes were taken. The field
notes were compiled after the completion of the focus Emergent themes
group and contained a description of events and tenta- Three themes emerged from the present study. These
tive explanations and interpretations (Seale & Barnard, included: (i) loss of control; (ii) stigma; and (iii) change
1998). The discussion was guided by a semistructured in self-perception. Quotations from the participants
group format. The following questions were used to have been included to illustrate the themes.
guide the group discussion:
1. What is it like being a young person who has Loss of control
experienced mental illness? Participants identified that they had a lack of say in
2. In what ways, if at all, have your life goals changed treatment. This related mostly to a lack of under-
since becoming unwell? standing of what was happening or why. It appeared
3. What issues do you believe have an impact on that there was limited explanation given to them to
your ability to form social relationships? assist them understanding the experience of being in
4. Can you tell us about the kinds of social activities hospital and the treatment they received. In addition,
that you are engaging in at present? they were not included in the decision-making process
5. How would you go about initiating social activities? concerning their treatment.
6. How would you go about meeting girls and strik-
‘You are left confused and you don’t know what is
ing up a conversation?
happening and other people are making decisions about
7. What assistance do you believe would help you
your life and you don’t have any say in it. They just
form relationships with other people? dose you up with medication and you are walking
8. What assistance do you think would help you around the hospital looking up or racing to the toilet.’
participate more fully in social activities?
Medication, they believed, increased their confusion.
Data analysis They also experienced decreased ‘motivation’, ‘mental
Before undertaking analysis, the audiotape was tran- ability’, and ‘autonomy’. They further reported experi-
scribed verbatim. Coding of the data involved organising encing becoming withdrawn and considered that they
sections of the text for the purpose of further analysis. became introverted. Being on high doses of medica-
According to Seale and Barnard (1998), the purpose of tion led them to becoming unmotivated where all they
coding is to bring together fragments of the text in order did was ‘watch TV, sleep and eat’. They had experi-
to create themes, which are defined as having a common enced a decline in participating in social activities.
element. As the result of coding was the identification Participants believed that they required assistance
of themes, the researcher will describe the emergent to regain control of their lives. For example, they
themes. The qualitative data was analysed by hand thought that listening to other people who had a men-
involving manual indexing. The data was read in order tal illness and who had learnt to adapt to living with a
to apply indexing to appropriate portions of text. Index- disability would be beneficial, especially if they were
ing was done in the margins alongside the text by using ‘working and leading a normal life’.
coloured pens to mark commonalities in the content.
‘Like role training … you meet past mental patients
In qualitative research, there is much emphasis
who have made it and are successful. They lost
placed on checking or verifying the analysis of the
friends. What strategies did they use? It would be a
data (Seale & Barnard, 1998). To counter possible bias, help ... past experiences and opinions.’
the authenticity of the results was verified by using
participant and colleague checks. The group members This, they felt, might provide them with some
were provided with a written summary of the analy- useful suggestions to help them form relationships
sis of the focus group for comment. Additionally, two with others. They also believed that it was important
neutral colleagues not connected with the research for them to be able to talk about their experiences, to
were invited to read the data, devise their own themes, share these with others, and hear the opinions about
which were then compared with the themes identified forming relationships with others, especially the things
by the principal researcher. This consisted of provid- they identified as the ‘not to do things’. This involved
ing independent colleagues experienced in both the the participants in situations where they relied on the
clinical area and focus group methodology to evaluate group leaders to teach or encourage them about
the accuracy of the researcher’s interpretations. Any situations where they might best not participate. They
differences in outcome were discussed and categories believed that talking about past experiences and
were amended where appropriate. opinions would be of help to them.
PERCEPTIONS OF SOCIAL STIGMA 247

felt that other people were better than them because


Stigma they did not have a mental illness. In addition, they
Participants reported that the effect of labelling and expressed uncertainty about what all other people
stigma had an effect on their relationships. Having a expected of them and how they could meet these
mental illness was hard to acknowledge and they felt expectations.
somewhat ‘odd’ or ‘strange’ as a result of being diag-
nosed with a mental illness. They found that following ‘One thing is dealing with the problem once you are
a diagnosis of mental illness, their relationships changed. diagnosed, trying to cope with the time, it takes a
long time to recovery, takes months and months if
This included the relationships with their friends:
you had a bad episode to recovery and get back to
your normal life’.
‘It has closed doors to my friends in such a way they
say they can look at it from the outside.’
Participants took a considerably long time to recover,
and interruptions such as relapses and hospitalisa-
‘When everyone around you considers you mentally
ill, it is hard to get out of that sort of person.’ tions delayed their recovery even further. They felt
that their illness had hindered their ability to do things
Participants considered that relationships with friends normally in their daily lives. Participants expressed
and other people had become more superficial and that many aspects of their lives were not as they
they found it hard to be themselves rather than some- should be in terms of daily routines and in terms of
one who had a mental illness and had been labelled as meeting and socialising with people of the opposite
such. This, they felt, was because they had a mental sex. They felt that the girls, in general, whom they
illness. They also found that relationships with family would be interested in, would not be able to cope
members changed, whereby they were given less with their mental illness.
say in what they did or wanted to do as the family
increasingly took control of decisions affecting them. ‘There is only a small percentage of women that
would like you for who you are. Having a mental
It was almost like they did not exist as independent
illness narrows that down even further.’
people any more.

Change in self-perception Participants doubted their ability to interact with


girls. This appeared to relate to what they had to offer
Participants experienced unclear expectations of girls another person. They appeared uncertain about their
because of a lack of confidence and motivation since personal qualities, which would make them likeable
they were diagnosed with a mental illness. This had or acceptable to others of the opposite sex. By having
an effect on their ability to set goals, their ability to do a mental illness, they felt that this decreased their
things and function normally, and the length of time chances even more of being able to independently
to recover. It was as though they felt that they would meet and socialise with girls.
not be ever able to reach the goals they had previously
set and had to lower them, as their goals had changed
according to their circumstances. They felt that the Discussion
medication caused them to be slower and as well their The present study sought to gain an understanding of
daily goals had become much simpler than they had the lived experience of young males diagnosed with a
been previously. psychotic illness and the impact that this had on their
Changes in self-perception influenced their rela- social relationships. The main themes identified in the
tionships with others. They did not know what to present study were the lack of control over their treat-
expect of themselves anymore. This impacted on their ment, stigma, and the uncertainty they experienced in
social circle and ability to socialise. self-perception.
The issue of having to take medication and the
‘Don’t know what to expect, the first thing might be
effect that this had on the young males was along
how to start a relationship not knowing what to
the lines of a pervasive theme. Medication impacted
expect. If or not they have a mental illness also. As I
was in a relationship with a girl and she had bipolar upon their ability to function in a number of ways,
the same as me. The doctor would say it is not a specifically feelings of confusion, loss of confidence,
good thing for us to be together because you would low motivation, increased social withdrawal, their
never get anywhere.’ ability to think clearly, feelings of discomfort with side-
effects, and a loss of autonomy. They found that they
Participants experienced a sense of decreased self- lacked understanding of what was happening to them
worth owing to their illness. They identified that they and why. This finding highlights the fact that there is
248 C. LLOYD ET AL.

a need to provide specific psychosocial interventions as barriers to maintaining relationships. The use of a
in addition to the optimal use of medication (Falloon group intervention to support young men in this has
et al., 1998), as was the case in this example. Many the potential to not only allow young men to lead
people with psychotic disorders in Australia receive more fulfilling lives, but also reduce the financial
psychotropic medication but are often denied the burden to society by building resilience, promoting
opportunity to receive psychosocial interventions community participation, and therefore reducing
(Gilbert et al., 2003), which is unlike what has been re-admission rates.
discussed here. This is for the most part due to these The young men in the present study had a number
services simply not being available (Jablensky et al., of ideas about what they believed would be helpful in
1999), unlike in the present study. assisting them to deal with the issues they were experi-
The attitude of the consumers to medication was encing. They thought that group interventions should
disturbing. This is an important area to address. First, incorporate such aspects as role-plays, excursions into
attending a medication group, which emphasises the the local community, hearing from girls about their
biology of mental illness and the necessity of taking expectations of relationships, and importantly, to hear
medication despite uncomfortable side-effects, might talks from people with mental illness who were success-
be useful. In addition, teaching consumers to discuss ful in achieving their life goals. Subsequently, the
their side-effects with the prescriber is most important. group program was structured to cover the following
As practitioners, we need to be able to explain the aspects: opportunities to share their experiences and
importance of mediation adherence and strategies for network with other group members, role playing social
managing their illness, but our consumers need to learn interactions, practise situations in the local community
to be assertive about speaking about the side-effects. and home-work assignments, hear invited women
Participants identified that being diagnosed with a speakers discuss girls’ expectations and appropriate
psychotic disorder ‘closed doors’ for them. This, they behaviour when meeting girls and planning a date,
said, was a result of how others viewed them as well and hear invited male speakers share with the group
as their own changed self-perception and expectation. how they managed their disability and achieved their
Other authors have observed similar changes (Ertugrul goals. The focus was on assisting the young men to
& Ulug, 2004; Penn et al., 2000). Once the young males feel more in control, develop self-confidence, and pro-
had been diagnosed and were receiving treatment, mote self-esteem through participation in activities
they felt the effects of unclear expectations. This related that were meaningful to them.
to what others expected of them and what they The implications for service provision are substan-
expected of themselves. They considered that they tial. There needs to be a change in the way care of
had lost confidence because of the stigma of having a young men (and possibly others) is planned and
mental illness. Stigma influenced their relationships delivered in order to address the disability associated
with their friends and they began to feel that other with psychotic disorders. First, a multidisciplinary
people were better than they were because they did approach needs to be taken in order to plan effective
not have a mental illness. Stigma has important impli- interventions to address identified needs. It is reason-
cations for the social inclusion of people with psychotic able to suggest that members of the multidisciplinary
disorders into the community (Ertugrul & Ulug). team should collaborate when planning treatment
The issue of girls emerged strongly, with the young interventions. This approach brings a greater depth to
males feeling that many of the girls they would be the proposed intervention than those carried out
interested in would not be able to deal with the fact solely by one discipline, as they each bring their special-
that they had a mental illness. In addition, their rela- ised skills to the design and implementation of re-
tionships changed with their family, with the family habilitation programs. In addition, there needs to be
increasingly wanting to have more input into their recognition by health-service managers that it is not
lives. In many ways, they saw that the relationships enough to facilitate recovery simply by providing
they had with others around them had become medication and access to some form of case manage-
increasingly superficial. The existence of meaningful ment. Sane Australia (2002) concluded that many
relationships has long been recognised as a protective people with psychotic disorders are living on the edge
factor against psychiatric relapse (Commonwealth of effective treatments and were suffering profound and
Department of Health and Age Care, 2000). However, as costly disability, which could be reduced if effective
shown, many issues associated with having a psychotic treatments were developed and introduced more
illness negatively impact on an individual’s ability systematically at onset and during the initial course
to maintain relationships. Participants in this group of the illness. If spending on rehabilitation programs is
identified their negative symptoms, medication, and a addressed in a significant way, there are a number of
lack of opportunity to learn appropriate social skills indirect cost savings from psychosocial rehabilitation.
PERCEPTIONS OF SOCIAL STIGMA 249

This flows from better health outcomes that diminish methods would be useful in determining the most
the demand for clinical services and increases the like- effective strategies to address deficits in social
lihood of gaining employment and being fully partici- functioning.
patory community members (Sane Australia). What
can be unequivocally argued is that the human cost is Acknowledgements
much greater in the absence of interventions such as
those described above. This program received a Certificate of Recognition
and a developmental grant from Eli Lilly Australia
Limitations of the study Pty. Ltd. We are grateful to the group members who
Although focus groups have strength in the produc- willingly participated in this study. At the time this
tion of data through interaction, there are a number of research was conducted, the authors worked for
limitations associated with the present study, which Rehabilitation Services, Integrated Mental Health Service,
need to be considered when reviewing the findings. and Gold Coast Health District. This article is based
These include the sampling procedures, where the on a presentation at the OT Australia Queensland
researchers were known to the participants and State Conference, Sunshine Coast, September 2004.
were the group leaders of the program that they were
attending, which could possibly contribute to bias.
However, the use of a focus group was found to be a
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