Vitiligo: More than a skin disease Sophie Heason - University of ...

Vitiligo: More than a skin disease
Sophie Heason and Gerry Kent
University of Sheffield, UK
“I feel that without vitiligo I would be a different person, my personality is trapped
behind a wall of being very self-conscious about myself. My only wish is to be cured -
to be normal”
“I can now say that it [vitiligo] doesn't affect my life at all, because I won't let my vitiligo
make me unhappy and neither will my family and friends let it.”
Vitiligo is a disfiguring disorder in which there is a progressive depigmentation of
skin. Vitiligo affects between one and four percent of the population, regardless of
race or sex. Patches, also known as lesions, of white skin and hair develop
unpredictably. While there is a genetic component to vitiligo, race, sex and age do
not affect the incidence of the disease. The cause is yet unknown and there is no
commonly used treatment. Although there are no health complications with the
disease, vitiligo can have a profound psychological effect on sufferers. Kent and
Al'Abadie (1996) found a high levels of distress in people with vitiligo compared to
the general population. In the study described below, 44 percent of the sample
reported an incident of stigma as a result of their vitiligo. However, as the above
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quotes illustrate, reaction to the disorder varies and not everyone with vitiligo has
psychological or social difficulties.
The aim of this report is to develop an understanding of the factors that
contribute to distress in people with vitiligo. After discussing theoretical issues, the
results of a quantitative study will be described and discussed. The aim of the study
is to test the predictions that theory follow from theoretical perspectives in this area.
To understand response to vitiligo we need to look at theories from both
sociology and psychology. Erving Goffman (1963) produced important work on
stigma that informs us about the interaction between a ‘marked’ person and their
‘markers’. Psychological research on appearance, depression and anxiety about
others’ evaluation of ourselves informs us about how people respond to their own
disfigurement and the potential of stigmatisation.
Sociological and psychological perspectives
Goffman (1963) began his study of stigma by looking back at the original meaning
of the word. Stigma is a Greek word used to describe a physical mark that would
be placed on a person to signify them as deviant, such as the branding of slaves.
Today, stigma refers to the social marks that are defined as undesirable and
deviant. These marks range from physical disability, to perceived weaknesses such
as mental illness, and tribal stigma - connected to race or religion. Intrinsic in the
discussion of stigma is the issue of deviance. Deviance is a social process, not a
static state. Therefore a person is only deviant when labelled as such. Harper
(1999) showed this by highlighting the affect that culture has on decisions about
acceptance of individuals. In Nepal, Antigua and Yucatan, an obese child was seen
as affluent and a desirable playmate, while in the US obesity was seen as deviant
and a reason for rejection.
Albrecht et al (1983) found a distinct difference in response to people with
physical disabilities and those with social deviance such as ex-convicts and the
mentally ill. Visibility of the mark was also found to be an important factor. After
comparing attitudes to people with different types of mark, Weiner, Perry and
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Magnussen (1988) discovered that physically based stigmas are perceived as
onset-uncontrollable and linked with reactions of pity and plans to help, whereas
stigmas based on mental and behavioural problems are perceived as onset-
controllable and reacted to with anger, little liking, and no plans to help. They also
found that perceptions of onset controllability are open to change given appropriate
information. In their experiment, information was given emphasising that the onset
of mental illness is not controllable. After this, respondents' judgement and affect
towards a person with mental illness in a vignette became more positive. Weiner
later extended this line of research with Schwarzer (1991) asking if there are factors
other than onset controllability that influence reactions to a marked individual. Onset
causality was shown to be related to pity, anger and support again. Descriptions of
people who actively cope with their problem received more pity and less anger than
those who did not cope well. They were also attributed with a higher chance for
improvement and more likely to receive important social support.
What does this mean to someone with vitiligo? While vitiligo is a physical
disorder, the patches can be mistaken for dirty marks, a social deviance. With its
cause not widely known the individual may be blamed for their lesions. A common
response is to conceal lesions, which avoids the possibility of stigmatisation, but
can cause anxiety and preoccupation with the concealment (Smart and Wegne,
1999; Schmidd-Ott et al, 1999). Disclosure is a way of changing the stigma
process, but is ‘effort-full’ and demands excellent social skills. Even if the person
does disclose the cause of the disorder and its onset is perceived as
uncontrollable, does someone with vitiligo really want to be treated with pity and a
desire to help?
Jacoby (1994) divided stigma into enacted and felt types. An actual incident
of discrimination or marking was termed enacted stigma while felt stigma is the
expectation of being marked. Thirty-two percent of respondents in a sample of
people with epilepsy said that they felt that their disease affected their opportunities
in work, while only two percent reported enacted incidents of stigma related to
work. Scambler and Hopkins (1986) found that enacted stigma is far less common
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than felt stigma, arguing that felt stigma is no less disabling than enacted stigma as
it leads to rejection anxiety and avoidance.
Stigma and appearance
Immediate recognition of an individual's difference from the norm is through their
appearance. Not only can appearances indicate an underlying difference but it can
be seen as a source of deviance in itself. For example, a person seated in a
wheelchair can be marked off as being different due to a physical disability, but the
use of the wheelchair can itself be stigmatising. Research in social cognition
indicates that we need categorical representations to function efficiently in a social
world (Macrae & Bodenhausen, 2000). Such categorisation begins at an early age
and influences intended behaviour towards visibly different people (Harper, 1999),
thus initiating the stigma process.
Such categorisation is not only affected by disfigurement, level of
attractiveness also affects others’ perceptions of a person. There is a social
understanding that beautiful people are good. Dion, Berschied and Walster (1972)
first discussed this common finding in an important paper. They found that attractive
people are judged to be more socially desirable than unattractive persons, to be
perceived as having more total happiness in their lives and more success in their
social and professional lives. Interestingly attractive people were not judged to be
better parents than unattractive people are. This may indicate an insight that
attractive people may be better received socially and reap the benefits from this,
but are no different in more internal attributes such as parenting style.
Subsequent research has found that attractive people are perceived as
more sociable, dominant, having better mental health, and having better social skills
(Fiengold, 1992) However attractive people are not attributed with particularly
greater character. The beauty and goodness stereotype is intrinsic in society, and
is illustrated well in the powerful and extreme world of Hollywood in which
disfigurement and ugliness are related to badness, and films highly biased in this
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stereotype encourage short-term favouritism to attractive people (Smith, McIntosh &
Bazzini, 1999).
These stereotypes have significant implications. Kerr et al (1985) used a
mock trial to assess the effect of victim attractiveness and disfigurement on jurors’
conviction of a defendant in a car theft and resulting accident. Defendants were
significantly less likely to be convicted when the victim was unattractive or
disfigured. Stevenage and McKay (1999) asked professional recruitment personnel
to assess personal qualities, job skills, and approval for a job based on a CV and
photograph. Applicants with a facial disfigurement were perceived to be less able
for the job and have fewer personal qualities and job skills. This is interesting in
comparison to perceptions of people in a wheelchair who were not at a
disadvantage. Perhaps this is due to the recruitment personnel being aware of
equal opportunities for wheelchair users, yet not having thought about their own
assumptions of a person who is disfigured. To summarise the findings of influence
of appearance on others’ assumption, a disfigured person is less likely to be
perceived as successful and more likely to be perceived as ‘bad’. Also
disfigurement increases possibility of conviction in a court and decreases
opportunities in the job market.
Effects of stigma on well-being
The values that western society has placed on appearance and image is shown to
have an effect on those who are different. Jones et al (1984) argue that labelling a
person as deviant and unacceptable may influence their self-concept, behaviour,
cognition and psychological health. In a study of young people with craniofacial
anomalies, dissatisfaction with facial appearance was related to low global self
worth, and low self perceptions of social acceptance (Pope & Ward, 1997). Altabe
& Thompson (1996) described how an individual’s ideas and assumptions about
their body are stored in a cognitive framework called the self-schema. The schema
is proposed to affect information processing and behaviour, and consequently
affect. Beuf (1990) suggests that a person with a visible stigma may internalise
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others' attitudes towards them and develop feelings of worthlessness. Bernstein
(1990) discussed how disfigurement affects development in view of Erikson's
developmental stages, with disappointment and lower levels of interaction in
infancy, assumptions based on the beauty myth during childhood, and dealing with
loss and a spoiled identity when developing a sense of self during adolescence.
Bernstein takes evidence from studies performed on perception of strangers and
generalises findings to all relationships that a disfigured person may have. Leary
and Kowalski (1995) propose that self presentation is at the heart of social anxiety.
A person who has strong intentions about presenting themselves in a certain way
may become anxious about their ability to self present adequately, they will find
obstructions to this presentation very stressful.
Mark Leary has led a great deal of work in relation to social exclusion theory.
He argues that humans have a fundamental motivation to be included in social
groups and are gregarious by nature (Leary & Kowalski, 1995). He and his
confederates argue that our ancestors who worked well in a group and who could
monitor how well accepted they were, were at an evolutionary advantage over the
isolated individual. Therefore, the need to belong has evolved as an inherited drive.
Leary takes the argument further and states that a large proportion of social
behaviour is directed at improving inclusion in groups (Leary, 1990). Leary argues
that social isolation leads to loneliness, negative affect, ill health, changes in
processing of social information, anxiety, and even criminality (Baumeister and
Leary, 1995)
The discussion has been on how stigma is a social process. The perception
and behaviour of both the marked person and the marker influence the effect of
stigma. In the context of a world in which there is a reaction against disfigured
people a situation in which a person with vitiligo has to manage the constant
possibility of exclusion by others is created. They also have to deal with their own
thoughts, feelings and behaviour in response to their stigma. The aim of the study
reported below was to explore the relationships between experience of stigma on
the one hand, and report of how intrusive the stigmatising disorder is on the other.
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Method
Participants
A postal questionnaire was sent to 680 members of The Vitiligo Society, a national
charity. They had been contacted through the society magazine and returned a
consent slip agreeing to participate. The questionnaires were sent in the early
summer as previous research has shown that at this time people with vitiligo are
preparing for revealing summer clothes and the darker skin around the patches that
make the lesions more noticeable. Therefore issues related to vitiligo were in the
forefront of the participants minds.
Measures
In addition to demographic information (sex, age, ethnic origin, and marital status)
the following measures were used.
• Vitiligo Severity Scale
A scale devised by the authors based on the Psoriasis Severity Scale cited by
Papadapoulos & Bor (1999) measured location and extent of body coverage of
vitiligo.
• The Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983)
• Illness Intrusiveness Scale (Devins, 1999)
Illness intrusiveness is the main dependent variable in this study. The illness
intrusiveness scale measures the degree to which a particular disorder or disease
affect different aspects of life, such as social involvement, recreation and
occupation. According to Devins (1999), illness intrusiveness is the effect of illness
related experiences on the person's ability to engage in rewarding and valued
activities. It is a mediating factor between illness and treatment on the one hand,
and distress on the other. The majority of research using this concept has been with
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patients with health threatening illnesses that require extensive treatment, such as
renal failure and lupus. Devins et al (1994) found relationships between illness
intrusiveness and perceived stigma and, in another study, levels of personal control
(1989). Perceived stigma and lack of control over progression of vitiligo may be
important factors in the effect of vitiligo on psychological health.
• The Appearance Schemas Inventory (Cash & Labarge, 1996)
The Appearance Schemas Inventory (ASI) assesses appearance related cognitive
assumptions such as those discussed by Altabe & Thompson (1996). Individuals
scoring highly on the ASI will focus a great deal on their appearance, and its effect
on interpersonal situations, will invest emotionally in their appearance and will have
internalised social stereotypes of appearance (Cash & Labarge. 1996). This
schema may influence processing of information related to others' reactions to
one's appearance, relating to the concept of perceived stigma.
• Fear of Negative Evaluation - short version (Watson & Friend, 1969;)
Watson and Friend (1969) constructed two scales to measure levels of social
anxiety. The fear of negative evaluation scale measures expectation of negative
evaluation and subsequent anxiety. The version used was shorter and items with
reverse meaning had been excluded (Kent, 2001).
• Qualitative Question re stigmatisation and coping
Four open ended questions concerning a situation in which someone had said or
done something negative as a result of the respondent’s vitiligo and how the
respondent had coped with this was also included.
Results
Population
Six hundred and ten valid questionnaires were returned. Seventy five percent of the
respondents were women, and 90% were white. The mean age was 48 years, with
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a range of 16-91. Ninety-seven percent of the respondents had lesions on their face
or hands. Four percent of the respondents were significantly depressed and 22%
were significantly anxious (scoring over 11 on the relevant scales of the Hospital
Anxiety and Depression Scale).
Correlation
Table 1 shows the relationships between the items in the questionnaire. It is clear
that as people get older the vitiligo becomes less intrusive and anxiety and fear of
negative evaluation decreases. There is a cluster of relationships between fear of
negative evaluation, anxiety, depression, importance of appearance, and illness
intrusiveness.
People who have reported a stigmatising event show higher levels of
importance of appearance and illness intrusiveness. Those with greater coverage
of lesions and older people reported more experience of stigma.
Regression analysis
Regression analysis indicates how much each variable contributes to level of illness
intrusiveness. Forty nine percent of the variance in illness intrusiveness was
explained. Table 2 indicates the variables entered into the analysis. Age,
importance of appearance, depression and report of enacted stigma each made
significant contributions to illness intrusiveness.
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age
ethnicity
visibility
Table 1: Correlation matrix for questionnaire measures
area covered by lesions
fear of negative
evaluation (fne)
age ethnic vis area FNE anx dep IA ii marital stigma
-0.28
anxiety -0.14 0.56
depression 0.38 0.65
importance of
appearance (IA)
0.56 0.49 0.42
illness intrusiveness (ii) -0.27 0.46 0.50 0.54 0.54
marital status 0.14
reported stigmatising
event
0.12 0.16 -0.24
(Indicated r values have a p >.001 )
Table 2: Results of single regression of variables explaining illness intrusiveness
Variable Beta p value
age -0.202

Discussion
depression 0.333

found that older people are less affected by appearance impairment. Porter & Beuf
(1988) found that age has a direct effect on well-being in a sample of people with
vitiligo. They found that importance of appearance, self esteem, perceived
discrimination and support are not mediating variables, which is surprising
considering that the same authors found that age is related to perceived stigma
(1991) and Ginsberg and Link (1989) found that people who are older at onset of
skin disease have lower sensitivity to other's opinions, anticipated rejection and
feelings of guilt and shame. This could be linked to the significant correlation found
between age, fear of negative evaluation and social anxiety. Kent (2000) also found
age at onset significant. Further investigation needs to be done in this study to
determine if any mediating variables exist in this sample.
Report of enacted stigma.
The finding that those who reported enacted stigma were more affected supports
previous research by their disfigurement. There is the issue of recall and
interpretation of events, in that people may have been stigmatised and not have
been able to recall the event, or seen it as offensive. Those who interpret particular
events as enacted stigma or have high felt stigma (not measured in this study) may
have a high fear of negative evaluation. Interesting opportunities for further study.
Race
These findings indicate that ethnic origin is not related to illness intrusiveness,
supporting previous research. Porter & Beuf (1991) compared the effect of race on
reaction to stigma in people with vitiligo. They found that race is not related directly
to degree of disturbance, but may be mediated by perceived stigmatisation (with
higher scores in black people) importance of appearance (with higher scores in
women and white people) and self-esteem in which there was no variation by group
in the sample. Porter & Beuf (1988) found that race has no direct significant effect
on psychological disturbance, only operating indirectly through importance of
appearance and perceived discrimination. This relates to Kent’s work (1999) that
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found that race was related to perceived stigma. Further analysis of this data will
discern the role of ethnicity as a mediating variable.
Appearance and concealability
The finding that visibility and extent of vitiligo lesions are not related to illness
intrusiveness contributes to a body of research with mixed findings. Some research
with people with different skin diseases suggests that visibility and appearance of
the disease are important. Jowett and Ryan (1985) found that a fifth of eczema
sufferers said that the physical appearance of the disease was the worst aspect of
the condition. In the same study the majority of acne sufferers said that the worst
aspect of the disease was the appearance and their subsequent lack of self-
confidence. Porter & Beuf (1988) reported that people with lower severity vitiligo
were less likely to be disturbed by the disease. They found that those with higher
severity are more likely to perceive discrimination, and therefore to have increased
psychological disturbance. Porter & Beuf (1991) found that visibility is not directly
related to disturbance, but indirectly by its effect on perceived stigmatisation. The
role of visibility and extent of vitiligo lesions in illness intrusiveness is not clear.
Conclusion
The sample used in this study does have its limitations. The problem of
representing the general population is clear in the imbalance between numbers of
men and women, and the lack of representation of non white people is difficult to
resolve. Further limitations are in the recruitment of respondents in that they are all
members of the Vitiligo Society. Time between sending and return of the
questionnaire did not significantly affect scores on any of the variables.
It is clear from this study that a person with vitiligo must cope with more than
their skin disease. A high proportion of the sample reported the experience of
enacted stigma along with heightened anxiety. The influence of social
categorisation and societal assumptions about appearance is twofold in this
situation. The first influence is on the fact that markers view disfigurement as a
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stigma. The second, and internal, influence is that it there seems to be a
relationship between the degree to which a person with vitiligo has internalised
these stereotypes (importance of appearance) and the intrusiveness of their illness
into everyday activities. This reinforces the process model of stigma that Goffman
originally proposed.
There are two explanations for the finding that illness intrusiveness
decreases with age, and the negative correlation between age, fear of negative
evaluation and anxiety. Either the person changes their perceptions of the world
and their mark with time, or a longer life has allowed more time to develop a useful
repertoire of coping behaviours. The former explanation would be supported by a
negative correlation between age and importance of appearance, but this was not
been found in this study. The latter explanation is supported by research in coping
behaviour and is certainly promising. Future research that may clarify the issues
raised in this study would examine importance of appearance with more depth;
perhaps a qualitative methodology would be more suited. Also research in the
coping process and applying the coping research to ageing would be useful.
The relationship between depressed mood and illness intrusiveness opens
up more issues. The influence of depression on cognition may be related to
interpretation of events of stigma. Also the cluster of correlations between anxiety,
fear of negative evaluation, importance of appearance and depression leave
questions about moderating and mediating variables. These can be explored
through further analysis.
The fact that experience of stigma affects illness intrusiveness is to be
expected. This is a huge social problem. The tackling of the values in society that
lead to stigmatisation of people who look different is well beyond the scope of this
paper. Some research has been done on the education of young people before a
disfigured child joined their class. The findings were promising. Perhaps a more
realistic way to reduce intrusiveness in people with vitiligo is to support them in
exploring and using effective coping strategies.
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Acta Psychiatra Scandinavica 67: 361-370
Sophie Heason is a Ph.D. research student in the Psychology Department at The
University of Sheffield. Sophie’s main field of research is health psychology; with
interests in disfigurement, body image, coping processes, social anxiety and depression,
and stigma. Her previous research includes social networks in people with learning
disabilities and applied work with people with learning disabilities and challenging
behaviour.
Gerry Kent is a senior lecturer in Clinical Psychology at the University of Sheffield. He
has a range of interests within health psychology, but they centre around the effects of
illness on social and psychological well-being.
Email address: s.heason@sheffield.ac.uk
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