Art & science | neurological conditions
Stigmatising feelings and
disclosure apprehension among
children with epilepsy
Veronica Lambert and colleagues describe the complex factors that may
prevent children and families from making known an epilepsy diagnosis
Correspondence
veronica.lambert@dcu.ie
Veronica Lambert is a lecturer in
nursing
Pamela Gallagher is a professor in
psychology
Stephanie O’Toole is a PhD
student
Ailbhe Benson is a PhD student
All at the School of Nursing and
Human Sciences, Dublin City
University, Dublin, Republic of
Ireland
Date of submission
August 17 2013
Date of acceptance
October 4 2013
Peer review
This article has been subject to
open peer review and checked
using antiplagiarism software
Author guidelines
ncyp.rcnpublishing.com
22 July 2014 | Volume 26 | Number 6
Abstract
Despite worldwide campaigns to enhance public
awareness, understanding and acceptability of epilepsy,
stigmatising feelings remain among children with
epilepsy and their families. Stigma can be internally felt
by the child (shame and embarrassment) or enacted
by others (discrimination). Many children with epilepsy
and their parents fear disclosure of the condition
and exercise a variety of disclosure or concealment
strategies. Maintaining these strategies can have a
negative, stressful impact on the child’s social and
psychosocial development and quality of life. Continuing
dialogue among families, friends, teachers and health
professionals should be initiated and supported.
Keywords
Children, disclosure, epilepsy, families, stigma
LACK OF KNOWLEDGE about epilepsy is closely
associated with stigmatisation of and social
discrimination against people living with the
condition (Austin et al 2002, Eklund and Sivberg
2003, Fernandes 2005). In an attempt to address
this, there have been worldwide drives to enhance
public knowledge, understanding, awareness and
acceptability of epilepsy (World Health Organization
(WHO) 2003). The Written Declaration on Epilepsy
(European Parliament 2011) advocates the
prioritisation of epilepsy as a major disease that
imposes a significant burden on those with the
condition across Europe, and crusades for increased
research and innovation in the field.
Despite initiatives to bring epilepsy ‘out of
the shadows’ (European Epilepsy Report 2010),
evidence suggests that stigmatising feelings remain
among children with epilepsy and their parents
(Jantzen et al 2009). These feelings cause many
children living with epilepsy, and their parents,
to conceal their diagnosis/condition from others
because it is only during times of a seizure that
epilepsy becomes overtly visible (Troster 1997,
Eklund and Sivberg 2003, Baker et al 2008).
A European study showed that 36 per cent
of children (aged 2-19 years, 74% of whom were
aged >12 years) kept their epilepsy a secret and
23% of parents kept their child’s epilepsy a secret
(International Bureau for Epilepsy (IBE) 2006). The
key reason for silence was the fear that the child
with epilepsy would be treated differently. Among
adults with the condition, Kilinc and Campbell
(2009) found that actively concealing their condition
took considerable effort and planning, and resulted
in epilepsy ‘taking over their lives’, increasing its
negative impact. More research is needed to discover
the extent to which this sense of ‘difference’ equates
to stigma (Fernandes et al 2011).
The purpose of this article is to illuminate the
continuing feeling of stigmatisation among children
with epilepsy and their families. Particular reference
is made to the impact of such ‘felt’ stigma on
open communication strategies within the family
environment and externally. The implications of
different disclosure decisions are considered, and
attention is drawn to gaps in empirical knowledge
and investigations in progress to address them.
Stigmatising feelings
Epilepsy has an ancient and well-documented
association with stigma. A person with epilepsy
can experience stigma in two ways: enacted
(discriminated against by others on grounds of
NURSING CHILDREN AND YOUNG PEOPLE
Box 1 Identified disclosure strategies used by children and families
Concealment Unplanned revelation
Child does not disclose Others learn about child’s
epilepsy and deliberately epilepsy by witnessing
keeps it secret from others. a seizure (stigmatising),
Parents avoid discussing through stigma cues (for
child’s epilepsy and keep example by observing
it secret. medication taking,
frequent school absences)
or from a third party.
perceived social unacceptability or inferiority) or
felt (personal feelings of shame and embarrassment
over having epilepsy and a fear of enacted stigma)
(Scambler and Hopkins 1986, Jacoby 1994, MacLeod
and Austin 2003). Schneider and Conrad (1980)
emphasised that stigma is not an automatic result
of possessing a discreditable attribute but rather,
the discreditable attribute becomes relevant to
the individual only if he or she perceives it as
discreditable. Felt stigma is believed to be more
complex and prevalent, and is often a product of
stigma ‘coaching’ from influential others (such
as parents). It often results in families using an
information concealment strategy in an attempt
to pass as ‘normal’ and reduce opportunities for
enacted stigma (Troster 1997).
However, the unpredictability of seizures
means there is an inherent risk of detection should
a seizure occur in public, thereby making the
invisible condition suddenly visible. This can have
embarrassing consequences and create a context
for more profound felt and enacted stigma, which
might result in permanent negative changes to social
identity and relationships (Wilde and Haslam 1996,
Eklund and Sivberg 2003, Lewis and Parsons 2008).
To avoid such happenings, those living with
epilepsy may restrict their activities and withdraw
socially because of the predominant worry that
others might find out about their condition.
This has serious ramifications for children’s
social development and psychosocial wellbeing
as they grow and grapple with tasks such as
forming their identity, achieving independence,
establishing peer relationships and developing
social competencies and skills. Because epilepsy-
related stigma is often implicitly expressed through
diagnosis concealment and social withdrawal,
the different dimensions of disclosure strategies
warrant further investigation. For those living
with epilepsy, information management (deciding
what to disclose, when and to whom) can be a
foundation for stress and anxiety.
NURSING CHILDREN AND YOUNG PEOPLE
Selective/partial disclosure Preventive disclosure Open disclosure
Confidantes to whom Tells others (for example Full disclosure; no
condition can be disclosed school class) about restrictions on information
are carefully selected and epilepsy if anticipating disclosed or parties to
decisions are made about detection and hoping to whom disclosed.
what and how to disclose forestall stigmatisation.
information. Decision to
disclose is situation-specific.
Disclosure apprehension
A scoping review of literature relating to children’s
experience of living with epilepsy revealed that
children experience immense apprehension,
anxiety and challenges in disclosing their
condition to third parties, such as family, friends,
teachers, the opposite sex and employers (Wilde
and Haslam 1996, Ronen et al 1999, Houston et al
2000, Hightower et al 2002, Eklund and Sivberg
2003, McEwan et al 2004, Elliott et al 2005,
Baker et al 2008, Lewis and Parsons 2008,
Moffat et al 2009).
Disclosure apprehension and anxiety
experienced by children are consequences of
two factors: how third parties react, and how
different it makes the child feel. By disclosing their
epilepsy to others, children reported the potential
for being teased, laughed at, bullied, rejected,
isolated and socially excluded. It is therefore not
surprising that children try to keep their condition
a secret. As a consequence, they are at greater risk
of experiencing higher perceived stigma and lower
self-esteem, self-efficacy and quality of life (Wilde
and Haslam 1996, Dilorio et al 2003, Baker et al
2005, Cheung and Wirrell 2006).
Disclosure strategies Drawing on adult and child
literature, a number of disclosure strategies were
identified (Box 1), together with factors that might
either drive or mitigate the decision to disclose or
conceal an epilepsy diagnosis (Box 2).
These findings revealed diametrically opposed
views surrounding the decision to conceal or
disclose an epilepsy diagnosis to others. For
example, there were instances where children
actively worked to conceal their condition in
an attempt to maintain normality and not feel
different. There were also instances where children
selectively or preventively disclosed their condition
to others, for safety and support. These findings
challenge the assumption that a generalised
strategy for concealment of stigma exists.
July 2014 | Volume 26 | Number 6 23
 Art & science | neurological conditions
However, why such variance occurs in children’s
decisions to either disclose or conceal their epilepsy
is unexamined. Perhaps this results from the focus
on the concept of concealment attributable to the
fear of enacted stigma. Yet, in some studies where
participants (adults and children) with epilepsy
recalled no instances of enacted stigma, they still
reported concealing their condition from others
(Scambler and Hopkins 1986, Westbrook et al 1992,
Jacoby 1994). The findings suggest a discrepancy
between people’s reports of no experience of
stigma and their secret-keeping behaviour
(Austin et al 2004). Some evidence suggests that
children who work to conceal their epilepsy do so
because they have not accepted their condition
and consequently do not want to talk about it
(McEwan et al 2004, Lewis and Parsons 2008).
These children reported feelings of secrecy, stigma,
shame and embarrassment.
Cycle of invisibility Although many children dislike
the secrecy and silence that encircle their condition,
they actively work to maintain them by concealing
Box 2 Factors that might drive or mitigate decision
to disclose or conceal epilepsy
Risk of detection (having seizures in public,
unpredictable nature and frequency of seizures).
Physical safety (others need to know what to do
during a seizure).
Maintenance of normality (avoid being treated
differently or seen differently).
Support (helpful to talk about epilepsy and others
may be supportive).
Stigma (perceived reactions of others, being
laughed at or called stupid).
Previous experience of disclosure (actual reactions
of others).
Social position (loss of peer group position and
changes in behaviour of others).
Media influence (how epilepsy is portrayed and
perceived in the media).
Control mechanism (deciding who and what to tell
is a way of increasing control).
Coping strategy (being able to talk about or avoid
talking about epilepsy).
Age (children get more used to telling others as
they get older).
Knowledge (lack of knowledge related to condition
versus being knowledgeable about condition).
Acceptance (positive versus negative acceptance of
condition).
Quality of relationships (trusting or not).
Wish for privacy (versus public information).
24 July 2014 | Volume 26 | Number 6
their epilepsy. Lewis and Parsons (2008) contend
that there is a cycle of invisibility perpetuated
not only by a lack of information and knowledge
but also by a limited willingness to be open and
honest. It is anecdotally assumed that openness and
honesty in disclosing one’s epilepsy to others might
result in positive outcomes, but there is limited
evidence to support such a proposition. Studies that
examined the concept of disclosure relating to other
conditions, such as sickle cell disorders (Dyson et al
2010) and asthma (Petteway et al 2011), revealed
that children’s disclosure of their condition to peers
often resulted in negative psychosocial outcomes.
Enhancing understanding
Ensuring that more information about epilepsy is
circulated in the public domain in various formats
(Lewis and Parsons 2008), and using a simple
biological model to explain epilepsy (Houston et al
2000), could enhance children’s understanding and
reduce their reluctance to disclose their diagnosis
to others. However, Lewis and Parsons (2008) found
that children wanted to learn about epilepsy through
the personal experiences of those living with the
condition. Fernandes (2005), on the contrary,
reported that knowing other children with epilepsy
did not necessarily improve children’s knowledge
or perceptions of epilepsy. Here an obstacle is
encountered: if people living with epilepsy do not
feel comfortable openly discussing their condition,
will this constrain advances in public knowledge and
perception? Does this lead back to a tendency to feel
embarrassed about epilepsy?
Social spaces for open dialogue There are cases
where children accept epilepsy, are not anxious
about it and are willing to openly and honestly
discuss it with others (Hightower et al 2002,
McEwan et al 2004, Lewis and Parsons 2008). Some
children reported that educating their peers about
seizures led to greater acceptance of their seizures
and of themselves (Hightower et al 2002).
To overcome obstacles to understanding, it is
apparent that we need to move beyond promoting
epilepsy awareness through providing information,
to creating social spaces that encourage open
dialogue between children with and without
epilepsy and others – for example, parents, health
professionals and teachers – so they can demystify
the condition and engage in critical debate about
stigmatisation. Baker et al (2005) suggested
there is a link between adolescents’ desire not to
acknowledge the existence of their epilepsy for fear
of being stigmatised and their lack of knowledge,
possibly compounded by stigma ‘coaching’
NURSING CHILDREN AND YOUNG PEOPLE
and limited discussions about the condition
(Houston et al 2000, Baker et al 2008, Lewis and
Parsons 2008, Moffat et al 2009).
Stigma coaching
Parents are key figures who consciously or
subconsciously may ‘coach’ stigma in their child
through their perceptions, attitudes, behaviours
and actions (Thomas and Nair 2011). For example,
through their own experience of the emotional pain
of stigmatisation (Mu 2008, Jantzen et al 2009),
parents may introduce the concept of stigma to their
child by remaining silent about the child’s epilepsy
or by conveying epilepsy as something shameful
that should be concealed. Hence, Schneider and
Conrad (1980) concluded: ‘Family silence about
epilepsy can itself be a lesson in stigma.’ That is,
silence may relay a message to children that having
epilepsy is something that cannot or should not be
spoken about.
This message can contribute to children’s
perceived expectation of stigma as they ‘learn to be
discreditable’ through recognition of their undesired
differentness (Eillis et al 2000, Jacoby and Austin
2007). Mu (2008) found that the word epilepsy
was seldom used or openly discussed either in or
outside the family. Parents saw seizures as holding a
negative meaning and being associated with stigma,
thereby resulting in shame and damage to the
family’s social image.
Consequently, parents can sanction maintaining
the secrecy of their child’s epilepsy, mediating the
relationship between epilepsy and perceived stigma,
which could affect children’s self-perception, quality
of life and epilepsy management.
Family communication and learned beliefs
Institutional and public global campaigns have
attempted to raise awareness of epilepsy, but
we also need to know more about the family
interpersonal context and how prejudiced beliefs
are generated, perpetuated and translated into
behaviours there (Thomas and Nair 2011). This is
crucial because, whereas a web of complex factors
contributes to epilepsy-associated stigma, parents
(as primary agents of children’s socialisation and
wellbeing) hold a unique position in influencing
children’s perceptions of what it means to have
epilepsy and their concept of stigma.
For example, Carlton-Ford et al (1997) reported
how parental beliefs about the limitations of
epilepsy and its associated stigmatisation affected
child behavioural problems, and Dunn et al (1999)
revealed that adolescents’ attitude to epilepsy and
the quality of family relationships were predictors
NURSING CHILDREN AND YOUNG PEOPLE
of depressive symptoms in adolescents with the
condition. It is important to examine learned beliefs,
because it may become more difficult to reverse
negative sensitivities and internalised feelings
of stigma about epilepsy if such beliefs are not
spoken about during childhood (Morrell 2002).
In a European study of more than 5,000 people
with epilepsy aged 16 years and older, living in
15 countries, Baker et al (1999) found associations
between increased levels of reported stigmatisation
(51% of participants felt stigmatised and 18% felt
highly stigmatised) and a lower age of epilepsy
onset, in addition to associations with seizure type
and frequency.
How parents interact with their child and
communicate information about his or her epilepsy
condition – either verbally or non-verbally –
could have a strong influence on children’s
understanding of their condition and any associated
stigma; however, little has been published about
what, when and how parents and children with
epilepsy communicate with each other.
Social isolation versus participation The
consequence of silence surrounding epilepsy is
social isolation for the child, because the typical
outcome of parental reaction to their child’s epilepsy
is over-protection and restriction of social activities
(Jantzen et al 2009). This can relay to the child the
limitations that their condition imposes on them
(‘disabling talk’) (Jacoby and Austin 2007).
By contrast, however, there are cases where
parents adopt strategies of openness, honesty and
neutrality to portray to their child that epilepsy is
nothing to be ashamed of and is managed similarly
to any other medical problem (Schneider and Conrad
1980). Through openness, parents want to achieve
maximum child participation and inclusivity.
Is openness and honesty the best approach?
Openness and honesty might result in positive
outcomes, but only limited empirical evidence exists
to support this proposition. For example, children
might prefer not to know or might not be ready to
discuss epilepsy (Lewis et al 2010). Furthermore,
parents might remain silent not because of stigma
but because they find it difficult to relay information
to their child and have limited understanding
themselves (Jantzen et al 2009). Few interventions,
whether family-based (Duffy 2011), educational or
social marketing, target those experiencing stigma,
as opposed to the stigmatiser (Birbeck 2006).
To address this gap, the authors of this article
are leading two research studies, having secured
funding from the Health Research Board in Ireland
July 2014 | Volume 26 | Number 6 25
 Art & science | neurological conditions

and the advocacy organisation Epilepsy Ireland. The
first study began in October 2012, with the purpose
of exploring the situational context surrounding
disclosure challenges faced by children (aged
6-15 years) living with epilepsy, from children’s
and parents’ perspectives. It is also investigating
the impact that various disclosure practices might
have on children’s self-perception (self-concept and
self-esteem), perceived stigma, quality of life and
epilepsy management (self-efficacy).
The second study began in January 2013,
with the remit to explore dialogue practices about
epilepsy and epilepsy-associated stigma within
families. It is also assessing the relationship of
parents’ perceptions of epilepsy and perceived
stigma to family communication patterns, parenting
styles, children’s seizure severity, children’s
perceptions of epilepsy and perceived stigma and
children’s participation in everyday activities.
Our vision is to inform the development
of appropriate psychosocial interventions so
that parents, children with epilepsy and other
stakeholders – for example health professionals
and teachers – can comfortably engage in dialogue
to demystify and debate the kinds of thinking about
epilepsy-associated stigma. Further information on
the progress of these studies is available from the
first author.
Conclusion
This article illustrates how stigmatising feelings
can remain among children with epilepsy and their
families, despite international campaigns to bring
epilepsy ‘out of the shadows’. As a consequence Conflict of interest
None declared
of their felt stigma, disclosure of their epilepsy to
others is a concern for children and their parents. Acknowledgements
From existing research we know there is a lack of Health Research Board Research
Awards 2012 and Medical
clarity about the concept of disclosure, with many Research Charities Group (Epilepsy
conflicting findings. What we do not yet know fully Ireland) Health Research Board
is the impact that disclosure decisions have on Funding Scheme 2012
the everyday life of children living with epilepsy.
Through further research we hope to inform
Online archive
psychosocial interventions to create space for all
stakeholders so they can actively engage in critical For related information, visit
our online archive and search
debates and think innovatively about epilepsy using the keywords.
disclosure and its associated stigma.

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