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Psychology and Psychotherapy: Theory, Research and Practice (2018)
©2018 The British Psychological Society
www.wileyonlinelibrary.com
A qualitative study: experiences of stigma by
people with mental health problems
Charlotte Huggett
1,2
, Mich
ele D. Birtel
3
, Yvonne F. Awenat
1,2
,
Paul Fleming
1
, Sophie Wilkes
1
, Shirley Williams
2
and
Gillian Haddock
1
*
1
Division of Psychology and Mental Health, School of Health Sciences, University of
Manchester, UK
2
Stockport and District Mind, UK
3
Department of Psychology, Social Work and Counselling, University of Greenwich,
London, UK
Objectives. Prior research has examined various components involved in the impact of
public and internalized stigma on people with mental health problems. However, studies
have not previously investigated the subjective experiences of mental health stigma by
those affected in a non-statutory treatment-seeking population.
Design. An in-depth qualitative study was conducted using thematic analysis to
investigate the experiences of stigma in people with mental health problems.
Methods. Eligible participants were recruited through a local mental health charity in
the North West of England. The topic of stigma was examined using two focus groups of
thirteen people with experience of mental health problems and stigma.
Results. Two main themes and five subthemes were identified. Participants believed
that (1) the ‘hierarchy of labels’ has a profound cyclical impact on several levels of society:
people who experience mental health problems, their friends and family, and institutional
stigma. Furthermore, participants suggested (2) ways in which they have developed
psychological resilience towards mental health stigma.
Conclusions. It is essential to utilize the views and experiences gained in this study to
aid understanding and, therefore, develop ways to reduce the negative impact of public
and internal stigma.
Practitioner points
People referred to their mental health diagnosis as a label and associated that label with stigmatizing
views.
Promote awareness and develop improved strategies (e.g., training) to tackle the cyclical impact of the
‘hierarchy of labels’ on people with mental health problems, their friends and family, and institutional
stigma.
*Correspondence should be addressed to Gillian Haddock, Division of Psychology and Mental Health, School of Health Sciences,
University of Manchester, Zochonis Building, Brunswick St, Manchester M13 9PL, UK (email: gillian.haddock@
manchester.ac.uk).
DOI:10.1111/papt.12167
1
Ensure the implementation of clinical guidelines in providing peer support to help people to combat
feeling stigmatized.
Talking about mental health in psychological therapy or health care professional training helped people
to take control and develop psychological resilience.
People with mental health problems not only have to cope with their primary condition
but may also experience the secondary impact of mental health stigma. Consequently,
stigma itself has been described as a ‘second illness’ (Finzen, 1996).
Almost half (44%) of people in England may experience a mental health problem in
their lifetime (Health & Social Care Information Centre, 2015), and approximately nine
out of 10 people with mental health problems report experience of stigma (Corker et al.,
2016). Mental health stigma, therefore, continues to be a major issue that needs
addressing. This research examines service user experiences and conceptualizations of
stigma associated with mental health.
Goffman (1963) defines stigma as possession of a negative characteristic which
discredits and segregates an individual from society. According to Social Identity Theory,
this process involves the categorization and stigmatization of individuals resulting in an
‘in-group’ and an ‘outgroup’ (Tajfel & Turner, 1979). People experiencing mental health
problems are perceived to belong to a minority ‘outgroup’.
Since Goffman’s early work an extensive body of research has specifically explored
stigma and mental health. Public and internalized stigma are often described in relation to
mental health problems (Corrigan & Watson, 2002). A large proportion of research
identifies that individuals with mental health problems experience public stigma
(stereotypes, prejudices, and discrimination) from the general population. A review of
studies which examined mental health attitudes across Europe revealed that the public
perceive people with mental health problems as unpredictable, violent, and dangerous
(Angermeyer & Dietrich, 2006). Within the population labelled with mental health
problems, there are also gradations of stigma; higher levels of prejudice have been
identified towards people with a diagnosis of schizophrenia (18–71%) or substance
misuse (65–71%) than those with depression (14–33%) or anxiety diagnoses (26%;
Angermeyer & Dietrich, 2006).
The biological approach to the aetiology of mental health problems assumes there is a
physiological cause, which stems from abnormalities in brain structure and/or function-
ing (Andreasen, 1985). Such explanations have been found to increase public acceptance
and reduce blame and responsibility in people with mental health problems (Angermeyer,
Holzinger, Carta, & Schomerus, 2011). However, findings indicate that assertions of
biogenetic aetiology of schizophrenia may increase public desire for social distance
(Angermeyer et al., 2011) and lower social acceptance (Schomerus, Matschinger, &
Angermeyer, 2014). Furthermore, the biological model may reduce empathy (Lebowitz &
Ahn, 2014) and perpetuate stigmatizing views amongst health care professionals towards
people with mental health problems (Schulze, 2007).
Beyond public reactions, those affected by mental health stigma have been identified
as at risk of social isolation, inadequate health care, poor employment opportunities, and
inadequate housing (Corrigan & Watson, 2002). People may cope with stigma in unique
ways, resulting in empowerment to change their future or damage to their perception of
the future. The latter may enhance the impact of stigma and reduce their quality of life
(Corrigan & Watson, 2002). Not only is this the case for people with mental health
problems but also their friends and family (Birtel et al., 2017).
2Charlotte Huggett et al.
Modified Labelling theory offers an explanation for the harmfu l effects stigma may have
on people with mental health problems (Link, Struening, Cullen, Shrout, & Dohrenwend,
1989). It suggests that society’s attitudes towards people with mental health problems and
connotations of receiving a diagnostic label are learnt through early socialization. An
additional, and detrimental, consequence of being labelled may be that people with
mental health problems accept and apply negative views, stereotypes, and emotions to
themselves, that is, ‘internalize’ stigma (Corrigan & Watson, 2002). Increased severity of
mental health problem and low levels of hope, self-esteem, empowerment, and
engagement with treatment are associated with internalized stigma (Livingston & Boyd,
2010). Additionally, internalized stigma may be a help-seeking barrier for people with
mental health problems due to feelings of shame and embarrassment (Clement et al.,
2015).
According to the ‘stigma-induced identity threat model’ (Major & O’Brien, 2005),
individuals respond involuntarily (e.g., anxiety and vigilance) or voluntarily (e.g.,
avoidance and identifying with peers) to stigma. Recent studies have used randomized
control trials (RCTs) to assess the effectiveness of cognitive therapy (Morrison et al.,
2013) and a mental health disclosure workshop (Corrigan et al., 2015). Both trials found
that these interventions reduced the impact of internalized stigma.
Several qualitative studies have examined mental health stigma (Alvidrez, Snowden, &
Kaiser, 2008; Easter, 2012; Mestdagh & Hansen, 2014; Mittal et al., 2013). Qualitative
research shows that education and disclosure of mental health problems reduced public
stigma (Jensen & Wadkins, 2007). Peer support and ‘being, acting and looking “normal”’
facilitated the avoidance and anticipation of internal and public stigma (Whitley &
Campbell, 2014, p. 7). These identify the negative emotional and behavioral reactions of
those experiencing internal and public stigma. Burke, Wood, Zabel, Clark, and Morrison
(2016) found that individuals who experience psychosis felt shame, fear, anxiety,
hopelessness, and anger due to stigma. Participants described how negative past
experiences contributed to social isolation and non-disclosure of mental health problems,
which are risk factors for worsening mental health problems, thus indicating a need to
develop improved strategies to enable individuals with mental health problems to cope
with stigma.
The current research
While research has examined the various components involved in the impact of public
and internalized stigma, few studies have investigated the subjective experiences of
mental health stigma by those affected, who were recruited through national charities
(Bonnington & Rose, 2014; Hayward, Wong, Bright, & Lam, 2002). To the authors’
knowledge, this topic has not been previously examined using a sample recruited solely
from non-statutory organizations, that is, local charities. It is important to ensure a
representative sample of those who would not necessarily be in contact with mainstream
services and/or have limited contact with mental health professionals. Whilst some of this
population may use both statutory and non-statutory services, they may well have
different views and experiences of stigma than those solely recruited from statutory
services. Service users may opt for non-statutory support as non-stigmatizing support from
peers can be facilitated and there may be less focus on mental health labels. This may be
attractive due to previous experiences of mental health stigma. Therefore, this study
aimed to examine experiences and views of people with mental health problems,
recruited through a local mental health charity, about mental health stigma.
Experiences of mental health stigma 3
Method
Participants
Participants were recruited using purposive sampling by age, gender, and self-reported
mental health diagnosis to ensure diversity in experiences (Ritchie, Lewis, & Elam, 2003).
Participants were aged 18 or older, English-speaking, self-reported experience of stigma
related to their mental health problem, and not currently experiencing an acute episode.
Thirteen people with mental health problems were recruited into two focus groups.
Participant demographic data are presented in Table 1.
Procedure
Ethical approval was granted by the university’s research ethics committee. A university
mental health service user group was consulted to advise on management of participant
distress and study materials. The first author distributed a recruitment poster to local
mental health charity groups and partner organizations inviting expressions of interest.
Eligible participants provided informed consent and attended either Focus Group 1
(March, 2015) or 2 (April, 2015).
Data collection
Focus groups in a local community venue were selected to facilitate the naturalistic
attainment of diverse views in a socially interactive manner that closely mimics ‘real life’
(Krueger & Casey, 2009; Liamputtong, 2011). A flexible topic guide covered six areas:
understanding of the term stigma, views and experiences of mental health stigma, public
and internal stigma, effects of stigma, overcoming stigma, and priorities for stigma
research. Focus groups lasted between 108.51 and 115.83 min, were audio-recorded, and
then transcribed verbatim by the first author.
Data analysis
Thematic analysis was applied to the data using Braun and Clarke’s (2006) 6-step
approach. Co-authors listened to each audio recording and read the transcriptions to
familiarize themselves and become immersed in the data. For each transcript, line-by-line
coding was adopted producing 737 codes. Using pen and paper, codes were condensed
and collapsed into 94 broad codes by the first, second, fourth, and fifth authors. Broad
codes were condensed into two main themes and five subthemes. All co-authors provided
input to review themes numerous times prior to agreeing the final themes.
Quality, rigour, and impact
Authors ensured ‘sensitivity to context’ (Yardley, 2000, p. 220) through provision of
ethical participant care. For example, experienced researchers, who had extensive
experience of working with the local mental health community, co-facilitated the focus
groups. Psychology student volunteers assisted with data collection and analysis,
including identifying and managing participant distress. One volunteer was trained to
provide emotional support to participants. ‘Commitment and rigour’ (p. 221) were
demonstrated by skilled facilitation of focus groups, accurate reporting of participant
views, and attention to detail during analysis. Multiple coders were utilized to incorporate
4Charlotte Huggett et al.
Table 1. Participant demographic information
Pp ID Gender Age Ethnic group
Mental health problem
Y/N
Identify self as a Carer
Y/N Self-reported mental health problem
FG1:1
a
M 35 White British Y N Depression and paranoid schizophrenia
FG1:2 F 30 White British Y Y Depression, anxiety, addict, alcoholic, dual diagnosis
FG1:3 F 28 White British Y N Depression, anxiety, borderline personality disorder
FG1:4 F 69 White British Y N No answer
FG1:5 M 49 Mixed –English, Chinese Y N Depression
FG1:6 M 30 White British Y N Clinical depression and social anxiety disorder
FG1:7 M 21 White British N N Psychosis
FG2:1 F 52 White British Y N Depression, anxiety, self-harm, suicidal thoughts
FG2:2 M 41 White British N N No answer
FG2:3 F 39 Mixed –Latin American Y N Depression
FG2:4 M 54 White British Y N Past experience –depression, anxiety, aggression and
alcohol addiction
FG2:5 F 26 White British N N One episode of psychosis
FG2:6 M 67 White British Y N Clinical depression
Note.
a
Focus Group 1.
Experiences of mental health stigma 5
a range of interpretations of the data. All codes and themes were verified as data-driven to
ensure rigour. Transparency and coherence were adhered to by providing a detailed
account of recruitment, data collection, and data analysis. ‘Impact and importance’ (p.
223) were exhibited by the wealth of data obtained from participants about their views on
mental health stigma.
The project team comprised of individuals who vary in age and seniority and have a
diverse range of professional backgrounds, including academic and clinical psychology,
social work, and nursing. This ensured broad and balanced analytical interpretations.
Bespoke training was provided to those with participant contact, whereby reflexivity
(Hellawell, 2006) was an important feature.
Results
The two main themes were as follows: (1) impact of ‘hierarchy of labels’ and (2)
developing psychological resilience, containing three (1) and two (2) subthemes,
respectively. A thematic map displaying themes and overlap of subthemes is provided in
Figure 1.
Impact of ‘hierarchy of labels’
This theme captured participants’ perceptions of the impact and ripple effect of the
‘hierarchy of labels’ on themselves as individuals with mental health problems (see Self),
their family and friends (see Expectations from family/friends), and ‘institutional stigma’.
Self
This subtheme highlighted the impact of stigma on people with mental health problems.
The majority of participants discussed mental health problems in terms of the biomedical
Figure 1. Illustration of overlap between subthemes in each theme.
6Charlotte Huggett et al.
model, using phrases such as ‘I’m mentally ill’ (FG1:P7). Participants identified their
mental health diagnoses as labels and associated them with stigmatizing views.
Internalized stigma was experienced by many participants and was perceived to be
influenced by different diagnostic labels: ‘I think there’s different levels of stigma attached
to different diagnoses...if someone said that they had...psychosis or schizophrenia,
might get slightly more stigma than someone with depression’ (FG2:P5). Such views
indicated perceptions of the existence of a ‘hierarchy of stigma’: ‘I think this idea of
“hierarchy of stigma” certainly affected me’ (FG2:P4). Participants intimated that the
‘hierarchy of stigma’ resulted from public perceptions of the level of dangerousness of
people with different diagnostic labels: ‘I think with depression, you’re seen to pose less
of a threat to other people’ (FG2:P5). Physical health conditions were deemed to be at the
bottom of the ‘hierarchy of stigma’: ‘If you got cancer, sympathy...Any kind of physical
illness, you will get sympathy. But mental illness...you won’t get sympathy’ (FG2:P6).
Societal stereotypes attached to participants’ ‘labels’ were reported as directly related
to internalized stigma. This notion links with the ‘hierarchy of stigma’. Internalized stigma
seemed to stem from participants’ acceptance of their mental health diagnostic label and
the negative connotations attached to such labels: ‘I think it’s...self-stigma and once
you’ve [got] a label, that’s it, you are that label, you are that diagnosis. Especially if it’s a
serious disorder’. (FG2:P2). The identification and perceived permanence of mental
health diagnoses may have severe consequences for people with mental health problems,
including suicidal feelings: ‘I was terrified of going to a Psychiatrist because I was terrified
of the prospect of what I was experiencing would be life-long. So much so, I very nearly
took my own life’ (FG2:P2). Not only may these issues perpetuate experience of self-
stigma, but also hinder mental health recovery.
People internalized stereotypes such as they were ‘mad’ and therefore ‘not normal’,
with one participant explaining why they were once detained under mental health
legislation: ‘I was an absolute nut-case’ (FG1:P1) and another ‘can’t be normal as a
mum...because I’ve got this label, I can’t do normal things now’ (FG1: P3). Internalized
stigma was described as one of the hardest impacts of stigma to overcome: ‘self-
stigma...for me has been the obstacle’ (FG2: P3).
Participants expressed a range of emotions in response to stigma. Some participants
felt anxious about others finding out about their diagnosis due to fear of being stigmatized:
‘how down that made me...how paranoid I was, “anyone’s going to find out, oh my god”’
(FG1:P2) and others voiced feelings of anger and blame towards themselves:
My anger’s not out going towards people, my anger’s to myself. So if a situation comes up and
I’ll think, is that my fault? I’ll go away thinking it is my fault and that’s when I start doing silly
things. I self-harm. (FG2:P1)
Expectations from family/friends
Participants discussed the impact and invisible barrier of the ‘hierarchy of stigma’ when
interacting with family and friends. Some described their relatives as reluctant to allow
them to disclose their mental health problems. Family members themselves were
reported to experience shame, self-blame, and fear public reactions after their relative
disclosed their mental health problem:
I think she was worried, partly because of reactions of the people towards me being open
about it. But partly, a personal sense of shame because she has a son who she thought was
plain sailing until he was like [age] and suddenly had a terrible breakdown. (FG2:P4)
Experiences of mental health stigma 7
This sense of shame may partially explain why participants described their relatives as
sceptical about their mental health problems: ‘I think the worst part is having a relative
that does not believe that you have got mental health problems’ (FG1:P4). This suggests
the impact of the ‘hierarchy of stigma’ is twofold as the impact on family members also
affects individuals. Furthermore, there are implied expectations of how people with
mental health problems may behave and some people may not meet these expectations.
Not only do family members hold these expectations, this also extends to friends, who
were perceived to fear an association with people with mental health problems due to
stereotypes:
I used to have a lot of friends, and...once they found out I was schizophrenic, automatically
assumed I was violent or whatever, for whatever reason. Who’ve just turn, kind of, not turned
they’re back on me, just moved on with their lives. (FG1:P1)
Evidently, and in line with the ‘hierarchy of stigma’, there were negative consequences
for possessing a ‘label’, which is perceived more negatively than other ‘labels’. This
affected participants due to loss of friendships and feelings of abandonment, which in turn
could influence future social relationships.
Institutional stigma
Stigma appeared to affect organizations’ policies, procedures and culture, which
consequently impacted on people with mental health problems. Discussions identified
stigma from both institutions themselves, such as hospitals, prisons, councils and the
government, and individuals working within them. One person outlined the effect of the
‘hierarchy of stigma’ on their experience of disability benefit assessment centres:
Because of depression, you have to be assessed, don’t you? And they are another
[organisation] that do not take mental health issues into factor, they’ll take everything else
because they don’t treat it with the seriousness that they should. (FG1:P4)
Evidently, participants felt the ignorance of staff in assessment centres perpetuated
stigma, affected their mental health, and facilitated the ‘hierarchy of labels’. One
participant perceived an existing hierarchy within accident and emergency departments
and described how this was internalized:
Y’ can’t ring an ambulance, they’re under stress anyway. They’re only for emergencies.
You’ve got to work out if your crisis is an emergency or not. So if you ring an ambulance and
then you feel guilty because you’ve took an ambulance from somebody else. (FG2:P1)
This suggests that not only do participants feel inferior to those who require
ambulances for a physical health problem, they may also dismiss their own suicidal
feelings and/or behaviors.
Another person illustrated how stigma influenced the culture of organizations and
how that affected their experience in a psychiatric hospital:
All they’re supposed to do is just watch you to see how you behave...and when you’re
having a breakdown, it’s just an absolute horrible place. I’ve been to prison and I’d much
rather be in prison than be in one of those hospitals ‘cos I just feel like they do not
understand. (FG1:P1)
8Charlotte Huggett et al.
Participants believed that stigma influenced their relationship with health care
professionals, suggesting that health care professionals lacked understanding and
distanced themselves. Participants agreed that health care professionals lacked under-
standing about participant’s career prospects: ‘My GP said the exact same thing to
me...I’ve got a diagnosis, but he said that I wouldn’t expect to get a job in mental health
if...you’ve had a mental illness’. (FG1:P7). This demonstrates one of the long-term
impacts that diagnoses had on the participant’s life.
A fear of blame was attributed by participants to an increased use of labels by health
care professionals: ‘I think, there’s a tendency to over diagnose and I think there is also
within that, a quickness to diagnose’ (FG2:P2). This suggests that more people than
necessary may be prone to experience the stigma associated to the label given.
The label, schizophrenia, was perceived to be higher in the hierarchy, than other
diagnoses. Evidently, a greater fear of association was described as apparent due to the risk
of criticism for the behavior of health care professionals’ patients:
They don’t want to be the psychiatrist that let the one get away. You know, the one in a million
schizophrenic, for example, that does go out and commit the murders. They don’t want to be
the psychiatrist that did that. (FG2:P2)
To avoid blame, participants thought that health care professionals desired to remove
the association: ‘if I can come up with some glib, quick thing that I think will be the
remedy, do this, tick, that’s off my back now, that’s off my books’ (FG2:P2). One way that
participants thought professionals avoided blame was to prescribe medication: ‘This
tablet will park the problem. Or alleviate the problem. It will get everyone else in the
surroundings off the hook...people have their backs to cover’. (FG2:P2). Participants
further believed that distancing by health care professionals contributed to their lack of
understanding.
Developing Psychological Resilience
This theme illustrated how people can cope with stigma by developing psychological
resilience: through ‘taking back control’ and having a support networ k (see Peer support).
Taking back control
Participants described how sharing experiences of stigma and mental health problems
were helpful: ‘I addressed a room full of GPs about me and my problems and it’s
empowering’ (FG2:P6). Participants also discussed how talking therapies or psycholog-
ical interventions can be beneficial in aiding disclosure and coping with stigma: ‘I honestly
think just talking through something can set your own mind straight and give you foresight
to do what you need to do to get well’ (FG1:P1). It was suggested that psychological
therapy could particularly help people to develop resilience to combat perceptions of
internalized stigma: ‘counselling helps dealing with how you perceive yourself and that’s
important because...everybody here’s said...in the past they feel like people don’t
understand them and they feel stigmatised as I did’ (FG1:P5).
Talking to a psychologist was perceived as beneficial in empowering participants to
continue moving forwards despite the impact of stigma: ‘the changes I’d made from the
first time she assessed me to the second time when she wrote another report [about] me,
it’s like, you have made changes, so you can change’ (FG1:P3). Specific psychological
Experiences of mental health stigma 9
therapies were mentioned as generally helpful, including ‘person-centred therapy’ (FG2:
P3) and ‘Mindfulness Based Cognitive Therapy (MBCT). Which dealt with all of those
judging thoughts...I found that wonderful’ (FG2:P2).
People described taking control when starting relationships by disclosing mental
health problems:
I always go with the approach that I’m going to have to mention it. ...as soon as I’ve kind of
explained it and their up on [educated] mental health and they understand what it means,
they’re completely fine with it. (FG2:P5)
This demonstrates that people are less likely to be a source of stigma once they gain
direct personal experience and knowledge of mental health problems. Thus, participants
thought disclosure was important to combat public and internalized stigma:
Getting things off your chest on the one hand and then feeling that you’re helping other
people by showing you can live through things. Still be employed or employable and be
honest about it. (FG2:P4)
This seemed to help some participants to feel proud of their mental health problems
and empowered to disclose: ‘I am sick of hiding it, and I decided you know what? Yeah, I
have got a mental health issue; I shout it off the roof now, because I don’t care’. (FG1:P2).
Disclosure appeared to be a result of people’s personal strength and determination to not
be defined as their ‘label’:
And once you’ve told them, they know exactly what you’ve got and you can relax then
because you don’t have to keep talking about it. I’m sick of talking about depression to be
quite honest. I want to get on with my life. But, it does affect me. I’m not ashamed of it. But, I
deal with it. But, I don’t want it to define me. I’m more than just an illness. (FG1:P5)
On the other hand, taking control by disclosing mental health problems was described
as difficult. People expressed the challenge of deciding who would understand and show
acceptance after disclosure: ‘you’d know you can’t speak to them; you can’t tell those
people how you are. Because, you know that they wouldn’t understand and it’s just a gut
feeling that you get’. (FG1:P4). The threat that after disclosure the person might tell
others prevented further disclosure: ‘I don’t care if they don’t like me, one person not
liking me, I don’t really care. But, if they start telling other people that I haven’t even
met...’ (FG1:P5).
Although most people found that disclosure of their mental health problems helped
them cope with stigma and accept their condition, when the group were asked how they
deal with stigma, one person responded ‘Don’t tell anybody’ (FG1:P4) implying that they
cope with stigma through withdrawal or disclosure avoidance. This highlights the
individuality in coping with stigma.
Peer support
People highlighted the importance of peer support networks and their ability to help
develop psychological resilience to overcome stigma:
Everybody deals with it differently; some people can cope better because they’ve got a better
support system around them [and] if someone’s been through it themselves...some people
10 Charlotte Huggett et al.
don’t have that kind of proper support network and they fall more often or crumble...then
get stigmatised more for falling down. (FG1:P6)
Participants expressed that they felt more comfortable in the presence of others who
had mental health problems ‘And you don’t really speak to anyone who haven’t got mental
health problems’. (FG1:P1). Participants then explained why their contact is limited:
‘They’ve gone through what you’re going through’ (FG1:P4) and ‘you know that people
are all in a similar kind of boat as you and you can feel like you can just relax. But, you’re not
alone’ (FG1:P5). Peer support was suggested as preferential to participants as they did not
have to worry about being stigmatized. Peer support networks also provided a space for
people to talk about their mental health problems so they could focus on other areas of
their lives: ‘if you can find different groups that can take that part of your life, you can put it
in that pigeon hole. That frees you up to have a bit of a life yourself’ (FG2:P2).
Although participants described peer support as helpful in terms of combating stigma,
limiting contact in this way also appeared to lead to isolation:
It leaves you to live a solitary lifestyle. I have support, I have a support worker and I have one
good friend. I don’t really speak to anybody else outside of that. It’s very solitary and it’s just
the way it’s become. (FG1:P1)
Discussion
Overall
Findings of the current study provide a meaningful contribution to the limited research,
which explores service user experiences of mental health stigma. Examination of the data
indicates that the ‘hierarchy of labels’ has a profound cyclical impact on several levels:
people who experience mental health problems, their friends and family, and institutional
stigma. Additionally, people with mental health problems develop psychological
resilience to overcome stigma through taking control of their diagnostic label and
developing support networks.
Whitley and Campbell (2014) reported that people in supported living facilities rarely
spoke about experiences of public stigma within their focus groups. Discussions revolved
around fear of perceived public stigma, which was echoed by participants in the current
study. However, participants in this study additionally spoke of many instances in which
they were stigmatized. Experiences may differ as those living in supported living facilities
may have a wider range of support needs and therefore more prone to stigmatization, than
individuals associated with a local mental health charity.
Impact of ‘hierarchy of labels’
Self
Many studies have compared stigmatizing attitudes to different diagnoses and have
described how members of the public attach higher levels of stigma to diagnoses
associated with dangerousness and unpredictability (Angermeyer & Dietrich, 2006). This
is reflected in the current findings, whereby participants described this as a ‘hierarchy of
stigma’ and within the hierarchy, individuals created their own ‘in-groups’ and
‘outgroups’. This further suggests the impact of differing levels of stigmatization
dependent on diagnostic labels. Thus, providing support for and demonstrating Modified
Labelling theory (Link et al., 1989). Furthermore, participant’s language in relation to
Experiences of mental health stigma 11
labels suggests they have internalized society’s view of the ‘sick role’ (Parsons, 1951).
People who adopt this notion do so unknowingly and become exempt from continuing
with traditional social activities. They are expected to try to get well and seek help
(Parsons, 1951). However, due to the stigma attached to mental health problems and the
longevity of labels, the ‘sick role’ potentially led participants to blame themselves for their
mental health problem.
Internalized stigma results from public stigma and is widely recognized in the literature
as an issue which needs addressing due to its detrimental effects on people with mental
health problems (Bos, Kanner, Muris, Janssen, & Mayer, 2009; Clement et al., 2015;
Corrigan et al., 2010, 2015; Livingston & Boyd, 2010). Several participants in the current
study were seemingly unaware that their statements demonstrated internal stigma.
However, some participants were aware of internal stigma and its negative effect: this is
consistent with the literature.
A recent qualitative study reported that participants had a variety of emotional responses
to internalized stigma (Burke et al., 2016). Participants in the current study shared similar
emotional responses such as fear, anger, worry, shame, and depression. However, and
additionally, participants in the current study experienced self-blame, suicidality, and
worthlessness in response to internalized stigma. These responses were not mentioned by
participants in Burke et al.’s (2016) study. Differences may be due to participants in the
currentstudy being recruited from non-statutory services. Furthermore, some participants in
the current study employed social avoidance and non-disclosure to cope with internalized
stigma, findings that are supported by the literature (Burke et al., 2016; Vass et al., 2015;
Yanos, Roe, Markus, & Lysaker, 2008). These means of coping have been reported to lead to
loss of relationships (Burke et al., 2016) and reduced help-seeking (Vogel, Wade, & Haake,
2006), which are described in the current study.
Expectations from family/friends
People with mental health problems reported that their family and friends were
dismissive, overprotective, and disbelieving of their mental health problems. They
commented that family and friends distanced themselves and were reluctant to disclose
their friend or family member’s mental health problem (Hamilton et al., 2014). The
current study supports and takes these results further. Participants attempted to explain
the reasons for these behaviors and attributed them to fear, self-blame, and shame.
Interestingly, participants in the current study did not refer to their friends or family
members as ‘carers’, whereas in other research, friends, family, and partners identify
themselves as ‘carers’ for people with mental health problems. A parent-carer identified
the need for training in the awareness and impact of expressed emotion as they may be
unaware of the potential harmful effects of their verbal and non-verbal communications
(Birtel et al., 2017). The need for training and awareness reflected in these findings
provide an alternative explanation for the perceived fear, self-blame, and shame
experienced by participants’ relatives in the current study, thus demonstrating the
profound and cyclical impact that stigma can have on family, friends, and people with
mental health problems themselves.
Institutional stigma
Evidently, societal beliefs about mental health problems are adopted and facilitated by
organizations and health care professionals, which could be explained by Modified
12 Charlotte Huggett et al.
Labelling theory (Link et al., 1989). Institutional stigma can often lead to internalized
stigma and loss of opportunities (Corrigan, Markowitz, & Watson, 2004), which is
demonstrated in the present findings. Disability benefit assessments, ignorance, and
stigma were raised, in the current study, as important issues to address. A longitudinal
ecological study in England found an association between an increase in reassessments for
disability benefits and an increase in suicides, antidepressant prescriptions, and mental
health prevalence (Barr et al., 2015). The current study provides support and a possible
explanation for these findings. Participants felt that assessors lacked understanding and
were ignorant of mental health problems, which perpetuated mental health stigma.
A wealth of research reports stigmatizing attitudes (Newton-Howes, Weaver, & Tyrer,
2008; Rao et al., 2009; Schulze, 2007) and behaviors (Burke et al., 2016; Thornicroft,
Rose, & Kassam, 2007) by health care professionals towards people with mental health
problems. Furthermore, UK-based studies (Newton-Howes et al., 2008; Rao et al., 2009)
found that health care professionals have differing attitudes towards different diagnoses
(e.g., personality disorder, depression, schizophrenia, and substance misuse). This is
comparable to the current study as it suggests that health care profe ssionals are affected by
and perpetuate the ‘hierarchy of stigma’. Furthermore, mental health stigma may
influence practice and, consequently, may be detrimental to service users. This could be
why participants felt that health care professionals lacked understanding. The current
study provides insight from the service user perspective on the impact of stigma on health
care professionals; however, future qualitative studies could explore this matter further
with health care professionals themselves. Participants attributed overdiagnosing,
prescribing medication, and early discharging of service users to fear of blame for the
actions of people with mental health problems.
Interestingly, in interactions with health care professionals about career prospects,
some participants defied Parsons’ notion of the sick role (1951). Their desire for a career
within the mental health field was met with a perceived lack of understanding and stigma
from health care professionals. This suggests that health care professionals may have
perceived the participant as still in the ‘sick role’, which could have been due to the power
imbalance and expectations within their relationship.
Developing psychological resilience
Taking back control
Some participants in the current study suggested that talking therapies may be useful in
combating the impact of public and internal stigma. MBCT was described by one
participant as beneficial in dealing with judgmental thoughts. Although MBCT does not
appear to have been tested in relation to felt and internalized stigma reduction, cognitive
therapy was found to be effective in reducing internalized stigma in people experiencing
psychosis (Morrison et al., 2013). This suggests that talking therapies could be
investigated further as a stigma reduction technique.
Within the literature, disclosure of mental health problems is widely discussed.
Goffman (1963) discussed the notion of impression management by stigmatized
individuals and how selecting information to share regarding their discrediting charac-
teristic would facilitate control over their public image. Some people with mental health
problems feel they cannot disclose, or disclose ‘altered’ information about their mental
health problem (Dinos, Stevens, Serfaty, Weich, & Kind, 2004), which Goffman (1963)
defined as ‘passing’. This reflects one individual’s experience reported in the current
Experiences of mental health stigma 13
study. On the other hand, choosing to disclose a mental health problem has been
associated with lower self-stigma and higher quality of life than non-disclosure (Bos et al.,
2009; Corrigan et al., 2010). These findings are echoed in the current study. Some
participants disclosed their mental health problem to not be defined by their label.
Therefore, this adds further validity to claims that mental health disclosure may have a
positive impact.
Disclosure of a mental health problem may be important in help-seeking. Concerns
over disclosure due to public or internal stigma have been linked to reduced help-seeking
(Clement et al., 2015). The positive effects of disclosure have been the basis for
developing a technique in America to support individuals in the ‘coming out’ process:
‘coming out proud’ (Corrigan et al., 2015). An initial RCT found that the intervention
significantly reduced agreement and application of stereotypes and harm caused by self-
stigma (Corrigan et al., 2015). Although some participants in the current study reported
positive experiences in disclosure, they also found it difficult and some opted not to
disclose their mental health problem. This suggests it may be beneficial to support people
in the disclosure process, and further research could investigate the above technique in a
UK population.
Peer support
Peer support is broadly discussed in the literature within the context of a recovery model
and is recommended by government guidelines (NICE, 2011, 2015). Findings from the
current study suggest that mental health peer support is a means of combating felt stigma.
Studies have consistently found through self-report questionnaires (Watson, Corrigan,
Larson, & Sells, 2007) and focus groups (Whitley & Campbell, 2014) that peer support was
protective against public stigma and helped reduce internal stigma. Interestingly,
participants in the current study did not mention peer support in relation to their
recovery. Participants valued the idea of interacting with people who have similar
experiences, suggesting that participants actively sought out support from their ‘in-
group’ for non-stigmatizing interactions. However, this could in turn facilitate their
‘outgroup’ status and, therefore, facilitate public stigma. This notion supports Social
Identity theory (Tajfel & Turner, 1979). On the other hand, another qualitative study
reported that people may find peer relationships difficult and would like to form
relationships not based on shared mental health characteristics (Angell, 2003). Even
though some participants in the current study were aware that their social contact may be
limited to people with mental health problems, they were positive about peer
relationships. Participants may be more positive towards peer support as they were
recruited from a mental health charity. Charities are experienced in providing peer
support groups and so may have normalized this type of support for participants, making
them more comfortable and open to the idea.
Limitations
A significant limitation was that around eight participants dominated focus group
discussions. Whilst the facilitators attempted to manage group dynamics by identifying
and engaging with quiet participants, several participants contributed less to group
discussions than others. If individual interviews were conducted, the researchers may
have been able to gain more feedback from quiet participants. On the other hand, due to
14 Charlotte Huggett et al.
group dynamics, some participants potentially gave more information due to memories
triggered by other participant feedback.
The majority of participants in the sample were White British. This reflects the
population associated with the local mental health charity used for recruitment. The
authors would have welcomed more diversity in the sample, enabling insight into mental
health stigma in people from different ethnic and cultural backgrounds. People from
ethnic minorities report experiences of mental health stigma within their own
communities due to religious or cultural beliefs and are less likely to seek and receive
support for mental health problems (Knifton, 2012; Nadeem et al., 2007). Further studies
could consult service user groups to tailor recruitment strategies to ethnic minority
groups.
Nonetheless, the results highlight that the ‘hierarchy of labels’ is prevalent on several
levels: individuals with mental health problems, their friends and family, and institutional
stigma. In summary, the findings may be an important contribution to understanding the
subjective views of people with mental health problems about the impact of, and
developing psychological resilience towards, mental health stigma.
Acknowledgements
The research reported in this article was funded by the University of Manchester Research
Institute (Principal Investigator: Mich
ele Birtel) and was a collaboration between the
University of Manchester, Stockport and District Mind, and the University of Surrey. We
would like to thank our volunteers Grace Bamber and Eleanor Smith as well as Les Crabb
(former manager at Stockport and District Mind) for their contribution to the research.
Author contributors
MB, YA, and GH designed the study. CH, MB, PF, and SW analysed the data with input from
the whole research team during project meetings. CH led preparation of the manuscript
assisted by multiple critical revisions of the manuscript from all research team members.
All authors have approved the final version of the manuscript.
References
Alvidrez, J., Snowden, L. R., & Kaiser, D. M. (2008). The experience of stigma among Black mental
health consumers. Journal of Health Care Poor Underserved,19, 874–893. https://doi.org/10.
1353/hpu.0.0058
Andreasen, N. C. (1985). The broken brain: The biological revolution in psychiatry. New York,
NY: Harper & Row.
Angell, B. (2003). Contexts of social relationship development among assertive community
treatment clients. Mental Health Services Research,5(1), 13–25. https://doi.org/10.1023/A:
1021703424197
Angermeyer, M. C., & Dietrich, S. (2006). Public beliefs about and attitudes towards people with
mental illness: A review of population studies. Acta Psychiatrica Scandinavica,113, 163–179.
https://doi.org/10.1111/j.1600-0447.2005.00699.x
Angermeyer, M. C., Holzinger, A., Carta, M. G., & Schomerus, G. (2011). Biogenetic explanations and
public acceptance of mental illness: Systematic review of population studies. The British
Journal of Psychiatry,199, 367–372. https://doi.org/10.1192/bjp.bp.110.085563
Barr, B., Taylor-Robinson, D., Stuckler, D., Loopstra, R., Reeves, A., & Whitehead, M. (2015). ‘First,
do no harm’: Are disability assessments associated with adverse trends in mental health? A
Experiences of mental health stigma 15
longitudinal ecological study. Journal of Epidemiology & Community Health,70, 339–345.
https://doi.org/10.1136/jech-2015-206209
Birtel, M. D., Haddock, G., Bamber, G., Huggett, C., Williams, S., & Awenat, Y. F. (2017). Impact of
stigma by association in mental health: Carers’ challenges in health care interactions and the
need for support. Manuscript under review.
Bonnington, O., & Rose, D. (2014). Exploring stigmatization among people diagnosed with either
bipolar disorder or borderline personality disorder: A critical realist analysis. Social Science and
Medicine,123,7–17. https://doi.org/10.1016/j.socscimed.2014.10.048
Bos, A. E. R., Kanner, D., Muris, P., Janssen, B., & Mayer, B. (2009). Mental illness stigma and
disclosure: Consequences of coming out of the closet. Issues in Mental Health Nursing,30,
509–513. https://doi.org/10.1080/01612840802601382
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in
Psychology,3,77–101. https://doi.org/10.1191/1478088706qp063oa
Burke, E., Wood, L., Zabel, E., Clark, A., & Morrison, A. (2016). Experiences of stigma in Psychosis: A
qualitative analysis of service users’ perspectives. Psychosis,8(2), 130–142. https://doi.org/10.
1080/17522439.2015.1115541
Clement, S., Schauman, O., Hraham, T., Maggioni, F., Evans-Lacko, S., Bezborodovs, N., &
Thornicroft, G. (2015). What is the impact of mental health-related stigma on help-seeking? A
systematic review of quantitative and qualitative studies Psychological Medicine,45,11–27.
https://doi.org/10.1017/S0033291714000129
Corker, E., Hamilton, S., Robinson, E., Cotney, J., Pinfold, V., Rose, D., & Henderson, C. (2016).
Viewpoint survey of mental health service users’ experiences of discrimination in England
2008–2014. Acta Psychiatrica Scandinavica,134,6–13. https://doi.org/10.1111/acps.12610
Corrigan, P. W., Larson, J. E., Michaels, P. J., Buchholz, B. A., Del Rossi, R., Fontecchio, M. J., & R€
usch,
N. (2015). Diminishing the self-stigma of mental illness by coming out proud. Psychiatry
Research,229, 148–154. https://doi.org/10.1016/j.psychres.2015.07.053
Corrigan, P. W., Markowitz, F. E., & Watson, A. C. (2004). Structural levels of mental illness stigma
and discrimination. Schizophrenia Bulletin,30(3), 481–491. https://doi.org/10.1093/oxf
ordjournals.schbul.a007096
Corrigan, P. W., Morris, S., Larson, J., Rafacz, J., Wassel, A., Michaels, P., & Rush, N. (2010). Self-
stigma and coming out about one’s mental illness. Journal of Community Psychology,38(3),
259–275. https://doi.org/10.1002/jcop.20363
Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental
illness. World Psychiatry,1(1), 16–20.
Dinos, S., Stevens, S., Serfaty, M., Weich, S., & Kind, M. (2004). Stigma: The feelings and experiences
of 46 people with mental illness. The British Journal of Psychiatry,184(2), 176–181. https://
doi.org/10.1192/bjp.184.2.176
Easter, M. M. (2012). “not all my fault”: Genetics, stigma, and personal responsibility for women with
eating disorders. Social Science and Medicine,75, 1408–1416. https://doi.org/10.1016/j.socsc
imed.2012.05.042
Finzen, A. (1996). Der Verwaltungsrat ist schizophren. Die Krankheit und das Stigma [The Board
of Directors is schizophrenic. The disease and the stigma]. Bonn, Germany: Psychiatrie-Verlag.
Goffman, E. (1963). Stigma. London, UK: Penguin.
Hamilton, S., Lewis-Holmes, E., Pinfold, V., Henderson, C., Rose, D., & Thornicroft, G. (2014).
Discrimination against people with a mental health diagnosis: Qualitative analysis of reported
experiences. Journal of Mental Heath,23,88–93. https://doi.org/10.3109/09638237.2014.
880408
Hayward, P., Wong, G., Bright, J. A., & Lam, D. (2002). Stigma and self-esteem in manic depression:
An exploratory study. Journal of Affective Disorders,69(1–3), 61–67. https://doi.org/10.1016/
S0165-0327(00)00380-3
Health & Social Care Information Centre. (2015, December 16). Health Survey for England, 2014:
Chapter 2: Mental health problems. Retrieved from http://content.digital.nhs.uk/catalogue/
PUB19295
16 Charlotte Huggett et al.
Hellawell, D. (2006). ‘Inside-out’: Analysis of the insider-outsider concept as a heuristic device to
develop reflexivity in students doing qualitative research. Teaching in Higher Education,11(4),
483–494. https://doi.org/10.1080/13562510600874292
Jensen, L. W., & Wadkins, T. A. (2007). Mental health success stories: Finding paths to recovery.
Issues in Mental Health Nursing,28(4), 325–340. https://doi.org/10.1080/
01612840701244086
Knifton, L. (2012). Understanding and addressing the stigma of mental illness with ethnic minority
communities. Health Sociology Review,21(3), 287–298. https://doi.org/10.5172/hesr.2012.
21.3.287
Krueger, R. A., & Casey, M. A. (2009). Focus groups: A practical guide for applied research. London,
UK: Sage.
Lebowitz, M. S., & Ahn, W. (2014). Effects of biological explanations for mental disorders on
clinicians’ empathy. PNAS,111, 17786–17790. https://doi.org/10.1073/pnas.1414058111
Liamputtong, P. (2011). Focus group methodology: Principle and practice. London, UK: Sage.
https://doi.org/10.4135/9781473957657
Link, B. G., Struening, E., Cullen, F. T., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling
theory approach to mental-disorders –An empirical-assessment. American Sociological Review,
54(3), 400–423. https://doi.org/10.2307/2095613
Livingston, J. D., & Boyd, J. E. (2010). Correlates and consequences of internalized stigma for people
living with mental illness: A systematic review and meta-analysis. Social Science & Medicine,71,
2150–2161. https://doi.org/10.1016/j.socscimed.2010.09.030
Major, B., & O’Brien, L. T. (2005). The social psychology of stigma. Annual Review of Psychology,
56, 393–421. https://doi.org/10.1146/annurev.psych.56.091103.070137
Mestdagh, A., & Hansen, B. (2014). Stigma in patients with schizophrenia receiving community
mental health care: A review of qualitative studies. Social Psychiatry and Psychiatric
Epidemiology,49(1), 79–87. https://doi.org/10.1007/s00127-013-0729-4
Mittal, D., Drummond, K. L., Blevins, D., Curran, G., Corrigan, P., & Sullivan, G. (2013). Stigma
associated with PTSD: Perceptions of treatment seeking combat veterans. Psychiatric
Rehabilitation Journal,36(2), 86–92. https://doi.org/10.1037/h0094976
Morrison, A. P., Birchwood, M., Pyle, M., Flach, C., Steward, S. L. K., Byrne, R., & French, P. (2013).
Impact of cognitive therapy on internalized stigma in people with at-risk mental states. The
British Journal of Psychiatry,203, 140–145. https://doi.org/10.1192/bjp.bp.112.123703
Nadeem, E., Lange, J. M., Edge, D., Fongwa, M., Belin, T., & Miranda, J. (2007). Does stigma keep poor
young immigrant and U.S.-born black and latina women from seeking mental health care?
Psychiatric Services,58(12), 1547–1554. https://doi.org/10.1176/ps.2007.58.12.1547
Newton-Howes, G., Weaver, T., & Tyrer, P. (2008). Attitudes of staff towards patients with
personality disorder in community mental health teams. Australian & New Zealand Journal of
Psychiatry,42, 572–577. https://doi.org/10.1080/00048670802119739
NICE. (2011). Common mental health problems: identification and pathways to care. Retrieved
from https://www.nice.org.uk/guidance/cg123/chapter/1-guidance
NICE. (2015). Psychosis and schizophrenia in adults: prevention and management. Retrieved
from https://www.nice.org.uk/guidance/cg178/ifp/chapter/Peer-support-and-self-manageme
nt
Parsons, T. (1951). Illness and the role of the physician: A sociological perspective. American
Journal of Orthopsychiatry,21(3), 452–460. https://doi.org/10.111/j.1939-0025.1951.tb
00003.x
Rao, H., Mahadevappa, H., Pillay, P., Sessay, M., Abraham, A., & Luty, J. (2009). A study of stigmatized
attitudes towards people with mental health problems among health professionals. Journal of
Psychiatric and Mental Health Nursing,16, 279–284. https://doi.org/10.1111/j.1365-2850.
2008.01369.x
Ritchie, J., Lewis, J., & Elam, G. (2003). Designing and selecting samples. In J. Ritchie & J. Lewis
(Eds.), Qualitative research practice. London, UK: Sage.
Experiences of mental health stigma 17
Schomerus, G., Matschinger, H., & Angermeyer, M. C. (2014). Causal beliefs of the public and social
acceptance of persons with mental illness: A comparative analysis of schizophrenia, depression
and alcohol dependence. Psychological Medicine,44, 303–314. https://doi.org/10.1017/
S003329171300072X
Schulze, B. (2007). Stigma and mental health professionals: A review of the evidence on an intricate
relationship. International Review of Psychiatry,19(2), 137–155. https://doi.org/10.1080/
09540260701278929
Tajfel, H., & Turner, J. (1979). An integrative theory of intergroup conflict. In W. Austin & S. Worchel
(eds.) The social psychology of intergroup relations (pp. 33–48). Belmont, CA: Brooks/Cole.
Thornicroft, G., Rose, D., & Kassam, A. (2007). Discrimination in health care against people with
mental illness. International Review of Psychiatry,19(2), 113–122. https://doi.org/10.1080/
09540260701278937
Vass, V., Morrison, A. P., Law, H., Dudley, J., Taylor, P., Bennett, K. M., & Bentall, R. P. (2015). How
stigma impacts on people with psychosis: The mediating effect of self-esteem and hopelessness
on subjective recovery and psychotic experiences. Psychiatry Research,230, 487–495.
https://doi.org/10.1016/j.psychres.2015.09.042
Vogel, D. L., Wade, N. G., & Haake, S. (2006). Measuring the self-stigma associated with seeking
psychological help. Journal of Counseling Psychology,53(3), 325–337. https://doi.org/10.
1037/0022-0167.53.3.325
Watson, A. C., Corrigan, P., Larson, J. E., & Sells, M. (2007). Self-stigma in people with mental illness.
Schizophrenia Bulletin,33, 1312–1318. https://doi.org/10.1093/schbul/sbl076
Whitley, R., & Campbell, R. D. (2014). Stigma, agency and recovery amongst people with severe
mental illness. Social Science & Medicine,107,1–8. https://doi.org/10.1016/j.socscimed.2014.
02.010
Yanos, P., Roe, D., Markus, K., & Lysaker, P. (2008). Pathways between internalized stigma and
outcomes related to recovery in schizophrenia spectrum disorders. Psychiatric Services,59(12),
1437–1442. https://doi.org/10.1176/appi.ps.59.12.1437
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health,15, 215–228.
https://doi.org/10.1080/08870440008400302
Received 2 December 2016; revised version received 1 December 2017
18 Charlotte Huggett et al.
