Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies · STUDY SELECTION: Qualitative studies on children’s experiences of epilepsy. DATA EXTRACTION:
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REVIEW ARTICLEPEDIATRICS Volume 138 , number 3 , September 2016 :e 20160658
Children’s Experiences of Epilepsy: A Systematic Review of Qualitative StudiesLauren Chong, a, b Nathan J. Jamieson, a, b Deepak Gill, PhD, c Davinder Singh-Grewal, PhD, d, e, f Jonathan C. Craig, PhD, a, b Angela Ju, BSc(Hons), a, b Camilla S. Hanson, BPsych (Hons), a, b Allison Tong, PhDa, b
abstractCONTEXT: Epilepsy is a common and severe neurologic disease associated with increased
mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE: To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES: Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION: Qualitative studies on children’s experiences of epilepsy.
DATA EXTRACTION: Results from primary studies. We used thematic synthesis to analyze the
findings.
RESULTS: Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries
were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility
to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of
privacy (declarative disease, humiliating involuntary function, unwanted special attention,
social embarrassment of medicine-taking), inescapable inferiority and discrimination
(vulnerability to prejudice, inability to achieve academically, consciousness of abnormality,
parental shame, limiting social freedom), therapeutic burden and futility (unattainable
closure, financial burden, overwhelming life disruption, exhaustion from trialing
therapies, insurmountable side effects, awaiting a fabled remission), navigating health care
(empowerment through information, valuing empathetic and responsive care, unexpected
necessity of transition, fragmented and inconsistent care), and recontextualizing to regain
normality (distinguishing disease from identity, taking ownership, gaining perspective and
maturity, social and spiritual connectedness).
LIMITATIONS: Non-English articles were excluded.
CONCLUSIONS: Children with epilepsy experience vulnerability, disempowerment, and
discrimination. Repeated treatment failure can raise doubt about the attainment of
remission. Addressing stigma, future independence, and fear of death may improve the
overall well-being of children with epilepsy.
aSydney School of Public Health and dDiscipline of Paediatrics and Child Health, University of Sydney, Sydney, New South Wales, Australia; bKids Research Institute, cT.Y. Nelson Department
of Neurology, and eDepartment of General Medicine, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia; and fSchool of Maternal and Child Health, University of New
South Wales, Sydney, New South Wales, Australia
Ms Chong conceptualized the study, carried out the data collection and analysis, coded the data, drafted the initial manuscript, and drafted the manuscript;
Mr Jamieson contributed to the data collection and initial analysis and reviewed and revised the manuscript; Drs Gill, Singh-Grewal, and Craig, Ms Ju, and
Ms Hanson contributed to the analysis and reviewed and revised the manuscript; Dr Tong conceptualized and designed the study, contributed to data analysis, and
reviewed and revised the manuscript; and all authors approved the fi nal manuscript as submitted.
To cite: Chong L, Jamieson NJ, Gill D, et al. Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies. Pediatrics. 2016;138(3):e20160658
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CHONG et al
Epilepsy is the most common serious
childhood neurologic condition,
affecting half a million children in
the United States alone. 1, 2 Up to
50% of children with epilepsy have
symptomatic epilepsy, which is
associated with a 10-fold increased
mortality risk. 3 Morbidity and
mortality are mainly attributable to
injury, developmental comorbidities,
and an increased risk of sudden death
that persists into adulthood. 2, 4 – 6
Although some children achieve
remission, the overall risk of
recurrence is close to 50%. 4, 5
Children with epilepsy often require
antiepileptic medications and must
avoid seizure triggers such as fatigue.
An estimated 80% of patients have
an associated behavioral disorder
and/or cognitive impairment. 1, 7
Studies have shown that children
with epilepsy report impaired
quality of life (QoL), low educational
attainment, social stigma, and low
self-esteem. 1, 5, 7 – 48 These measures
are worse in children with higher
frequency seizures. 8 – 10, 49, 50
The significant consequences of
epilepsy signal the need to understand
how children perceive and cope with
the disease and treatment, as well as
their concerns and needs. Most existing
qualitative studies have a limited
number of patients and are conducted
in a single setting. A systematic review
and synthesis of multiple qualitative
studies can compare data from
different populations and settings
to provide more comprehensive
information for health care providers. 51
This review aimed to describe
children’s perspectives of living with
epilepsy to inform strategies to direct
health care toward improved patient
outcomes and QoL.
METHODS
We followed the Enhancing
Transparency of Reporting the
Synthesis of Qualitative research
framework. 51
Selection Criteria
Qualitative studies on the experiences
and perspectives of children and
adolescents (≤21 years of age)
diagnosed with epilepsy were
eligible. We excluded quantitative
epidemiologic studies (eg, randomized
controlled trials, cohort studies),
basic science studies, nonprimary
research articles, economic studies,
quantitative surveys, psychiatric
assessments, studies that did not
elicit or report data from children
and adolescents with epilepsy, and
non-English articles due to lack of
resources for translation. Studies on
parental perspectives were excluded,
as parents may have perspectives
different from children.
Data Sources and Searches
The search strategy is provided in
the Supplemental Information. We
conducted searches in Medline,
Embase, PsycINFO, and CINAHL
from inception to August 2015. We
also searched Google Scholar and the
reference lists of relevant studies and
reviews. We screened the abstracts
and excluded those not meeting the
inclusion criteria, then assessed the
full-text reports of potentially relevant
studies.
Appraisal of Transparency of Reporting
We evaluated the transparency of
reporting of each study by using the
Consolidated Criteria for Reporting
Qualitative Health Research. 52 This
framework included criteria specific
to the research team, study methods,
context of the study, analysis, and
interpretations. Two reviewers
(LC, NJJ) assessed each study
independently, and consensus was
reached after discussion with AT.
Data Analysis
We used thematic synthesis
as described by Thomas and
Harden. 53 Thematic synthesis
identifies and analyzes recurring
themes in the primary literature,
to draw conclusions in systematic
reviews. 53 – 55 The development of
descriptive and analytical themes
using coding invokes reciprocal
translation and constant comparison.
One potential limitation in combining
findings of qualitative studies is that
the findings of individual studies
may be decontextualized, and the
concepts identified in 1 setting may
not be applicable to others. However,
context is able to be preserved by
providing summaries of each study
( Table 1) so that readers can judge
for themselves on whether the
contexts of the studies the review
contained were similar to their
own. 53 Summarizing qualitative
findings can also prove difficult, due
to the ethical and logistical difficulties
in accessing original transcripts.
For each study, all participant
quotations and text under the
“results/findings” or “conclusion/
discussion” section were extracted
and entered verbatim into
HyperRESEARCH (version 3.7.3;
ResearchWare, Inc, Randolph,
MA) software for storing, coding,
and searching qualitative data. LC
conducted line-by-line coding of
the text into concepts inductively
derived from the data. Concepts
were compared and transferred
across studies by adding coded text
into existing concepts, or creating
additional codes for new concepts.
Similar codes were then grouped
into themes. The preliminary
themes were discussed by LC, NJJ,
AJ, and CSH who had read all the
included articles, to ensure that
the themes reflected the full range
of experiences reported by all
study participants (investigator
triangulation). The data were
recorded by LC according to the
revised analytical framework and
cross-checked by the research team.
From this, an analytical thematic
schema was developed by identifying
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PEDIATRICS Volume 138 , number 3 , September 2016 3
TABLE 1 Characteristics of Included Studies
Study ID Patients, a n Sex, a M:F Age
Range, y
Conceptual
Methodological
Framework
Data Collection,
Qualitative
Analysis Research Topic and
Scope
Australia
Micallef 2010 33 53 21:32 12–29 Qualitative Semistructured face-to-
face and telephone
interviews
Content analysis Psychological
function
Africa
Asindi 2012 13 50 31:19 6–18 Qualitative Open-ended
questionnaire
Thematic analysis Others’ perceptions
about epilepsy
Mbugua 2013 46b 35 NS NS Qualitative Semistructured face-to-
face interviews
NS Lived experience
with epilepsy and
stigma
Mushi 2011 35 41 NS 15–60 Qualitative Semistructured face-to-
face interviews
Thematic analysis Knowledge of
epilepsy
Brazil
Siqueira, 2011 40 34 15:19 11–18 Qualitative Semistructured face-to-
face interviews
Quantitative analysis Self-esteem and
social support
Canada
Elliott 2005 19 49 24:25 7–18 Grounded theory Semistructured face-to-
face interviews
Thematic analysis Impact on QoL
Hum 2010 24 27 12:15 11–21 Qualitative Semistructured face-to-
face interviews
Thematic analysis Social functioning
postsurgery
Mulligan 2013 27b 32 1:1 6–13 Qualitative Body mapping Thematic analysis Lived experience
Nguyen 2013 56b 11 NS 18–21 Phenomenology Semistructured face-to-
face interviews
Content analysis Transitioning to
adulthood
Finland
Kyngas 2003 57 8 NS 13–17 Qualitative Semistructured face-to-
face interviews
Content analysis Patient education
Kyngas 2004 28 8 NS 13–17 Qualitative Semistructured face-to-
face interviews
Content analysis Support network
India
Anand 2014 12 24 12:12 7–10 Qualitative Semistructured face-to-
face interviews
Thematic analysis Attitude toward
epilepsy
Italy
Galletti 1998 20 41 NS 6–18 Qualitative Semistructured face-to-
face interviews
NS Seizure experience,
impact on daily
living, opinion on
drugs, others’
perceptions about
epilepsy
Iran
Hosseini 2010 26b 25 NS 18–65 Qualitative Semistructured face-to-
face interviews
Content analysis Concerns of living
with epilepsy
Sweden
Admi 2007 11 NS NS 15–24 Life history method Semistructured face-to-
face interviews
Thematic analysis Lived experience with
epilepsy
Eklund 2003 18 13 3:10 13–19 Qualitative Semistructured face-to-
face interviews
Content analysis Lived experience
with epilepsy and
coping skills
Räty 2009 58 2 0:2 20–65 Phenomenology Semistructured face-to-
face interviews
Phenomenographic Conceptions of
epilepsy
Räty 2011 59 2 0:2 20–65 Phenomenology Semistructured face-to-
face interviews
Phenomenographic Lived experience with
epilepsy
Viberg 1987 44 16 7:9 11–16 Qualitative Semistructured face-to-
face interviews
NS Lived experience with
epilepsy
Taiwan
Chen 2010 16 15 5:10 7–12 Phenomenology Semistructured face-to-
face interviews
Thematic analysis Lived experience with
epilepsy
Chiu 2014 17 11 6:5 14–17 Qualitative Semistructured face-to-
face interviews
Content analysis Adjustment after
medication
discontinuation
United Kingdom
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CHONG et al 4
Study ID Patients, a n Sex, a M:F Age
Range, y
Conceptual
Methodological
Framework
Data Collection,
Qualitative
Analysis Research Topic and
Scope
Kilinc 2008 25 NS NS 15–56 Phenomenology Semistructured face-to-
face interviews
Thematic analysis Adjustment after
medication
discontinuation
Lewis 2008 29 66 NS 3–23 Qualitative E-survey and
Semistructured face-
to-face interviews
Thematic analysis Understanding of
epilepsy
Lewis 2013 30 30 NS 13–19 NS Semistructured face-to-
face interviews, small
group interviews,
focus groups
Thematic analysis Transition from
children’s to adult
services
McCorry 2009 31 NS NS 15–68 Grounded theory Semistructured
telephone interviews
Content analysis Communication with
doctors about
antiepileptics
Moffat 2009 34 22 11:11 7–12 Grounded theory Focus groups Thematic analysis QoL
Ridsdale 2003 36 NS NS 17–83 Ethnography Semistructured face-to-
face interviews
Ethnography Challenges of
diagnosis and
nurse intervention
Ridsdale 2012 37 NS NS 21–91 Qualitative Semistructured face-to-
face interviews
Thematic analysis Emergency medical
service use
Ryan 2012 38 NS NS 16–28 Qualitative Semistructured face-to-
face interviews
Thematic analysis Fear of seizures
Thomas 2013 42 NS NS 17–68 Phenomenology Semistructured face-to-
face interviews
Thematic analysis Changing
antiepileptic drugs
Varley 2009 47b 21 11:10 17–69 Phenomenology Semistructured face-to-
face interviews
Thematic analysis Epileptic care
experiences
Varley 2011 43 NS NS NS Phenomenology Semistructured face-to-
face interviews
Thematic analysis Health care journey
Wilde 1996 45 NS NS 13–25 Qualitative Semistructured face-to-
face interviews
Thematic analysis Lived experience with
epilepsy
United States
Hightower 2002 21 8 5:3 9–12 Qualitative Semistructured face-to-
face interviews
Thematic analysis Lived experience with
epilepsy
Hodgman 1979 22 25 12:13 14–18 Qualitative Semistructured face-to-
face interviews
NS Coping skills
Houston 2000 23 22 NS NS Qualitative Semistructured face-to-
face interviews
NS Information needs
and understanding
of epilepsy
MacLeod 2010 48 3 0:3 13–18 Phenomenology Semistructured face-to-
face interviews
Thematic analysis Lived experience with
epilepsy
McNelis 2007 32 11 6:5 7–15 Qualitative Focus groups Thematic analysis Concerns and needs
RamachandranNair
2014 60b
23 7:16 18–65 Qualitative Semi-structured
telephone interviews,
focus groups
NS Discussion of sudden
unexpected death
with epilepsy
Sample 2006 39 7 NS 0–21 Phenomenology Focus groups Content analysis Lived experience with
epilepsy
Swarztrauber 2003 41 4 2:2 12–18 Qualitative Focus groups Content analysis Treatment
Vietnam
Aydemir 2009 14 NS NS 15–77 Ethnography Semistructured face-to-
face interviews
Thematic analysis Treatment,
psychosocial
impact
Multinational
Baker 2008 15 212 NS NS Qualitative Open ended
questionnaire
Thematic analysis Impact of epilepsy
and medications,
and others’
perceptions about
epilepsy
Grounded theory, theories are grounded in the empirical data and built up inductively through a process of careful analysis and comparisons; phenomenology, to study peoples’
understanding and interpretations of their experiences in their own terms and emphasizing these as explanations for their actions; ethnography, to discover and describe individual
social and cultural groups. NS, not stated or not applicable.a n refers to number of participants aged <21 y with epilepsy.b Conference abstract.
TABLE 1 Continued
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PEDIATRICS Volume 138 , number 3 , September 2016
patterns and relationships within
and across themes. The schema was
reviewed and discussed among the
research team (LC/NJJ/AJ/CSH) to
ensure that these reflected the data
across all included studies.
RESULTS
Literature Search
Our search yielded 7310 articles. Of
these, 43 articles from 21 countries
involving at least 951 children with
epilepsy were included ( Fig 1).
The number of participants was
not reported in 1 study. The study
characteristics are provided in Table
1. The age range of participants
was 6 to 21 years, and 678 (54.0%)
were boys or young men. At least
1180 (94.0%) had active epilepsy,
22 (2.0%) had had no seizures in the
past 6 months, and 53 (4.0%) were in
remission.
Completeness of Reporting
Studies reported between 3 and
18 of the 26 Consolidated Criteria
for Reporting Qualitative Health
Research criteria ( Table 2). The
participant selection strategy was
described in 25 (58%) studies,
and 22 (51%) studies reported
researcher triangulation. Raw data in
the form of quotations was provided
in 35 (81%) studies.
Synthesis
We identified 6 main themes: loss
of bodily control, loss of privacy,
inescapable inferiority and
discrimination, therapeutic burden
and futility, navigating health care, and
recontextualizing to regain normality.
Selected participant quotations that
conveyed the meaning of the theme
were chosen from included studies and
integrated as examples in the results.
Additional illustrative quotations are
presented in Table 3.
The conceptual links among themes
are presented in Fig 2. Participants
struggled with emotional
vulnerability and the medical
management of epilepsy; however,
they simultaneously felt empowered
as they came to accept and control
their disease. The declarative nature
and humiliating involuntary function
associated with seizures heightened
their sense of being overtaken during
a fit, and their subsequent awareness
of their abnormality. Empathetic and
5
FIGURE 1Search results.
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CHONG et al
responsive health care encouraged
them to work through these personal
impacts and their struggles with
therapy. This support from clinicians,
alongside the provision of relevant
information, gave participants the
capacity to manage their disease and
distinguish it from their identity.
Loss of Bodily Control: Being Overtaken
During seizures, the unusual and
intense physical symptoms, including
dizziness and inability to breathe,
contributed to participants’ sense of
being vulnerable and overpowered.
Seizures disturbed their “basic trust
in their bodies and in themselves.” 20
They described this as, “It felt like my
insides sort of turned literally upside
down, and this feeling like I was just
going to die...and I sort of get, kind of
a vision...the things I see are always
really terrifying.” 38
Susceptibility to Physical Harm
Participants worried that seizures
could place them in serious danger of
injury. They feared that they would
“knock [their] head, ” “fall to the floor, ”
or “bite [their] tongue.” 19 Several
regained consciousness after seizures
to find themselves unexpectedly
in the hospital and undergoing
procedures, which they found “so
traumatizing.” 19 Some participants
dropped out of school due to safety
concerns. 14 For others, the fear of
serious harm reduced over time. 38
Fragility of the Brain
Participants were fearfully aware
of the involvement of their brain
in epilepsy, reminded by day-to-
day learning and concentration
difficulties, postictal confusion,
memory loss, and fears of becoming
a “vegetable.” 38 Some participants
reported that after a seizure they
could forget “everything [they’d]
done that day, ” “everything that
[they’re] going to say, ” and that
“usually it doesn’t come back.” 19
Alertness to Mortality
The unpredictable timing, severity,
and potentially dangerous locations
of where they could have seizures
6
TABLE 2 Comprehensiveness of Reporting in Included Studies
Item Studies Reporting Each Item No. of Studies (%)
Personal characteristics
Interviewer/facilitator identifi ed 12 – 24, 28 – 31, 33 –35, 37, 38, 40 –42, 44, 47, 48, 53, 61, 62 28 (65)
Occupation of the interview of facilitator 13, 14, 16 –23, 29 – 31, 33– 35, 37, 42, 44, 61, 62 21 (49)
Experience or training in qualitative research 16, 19, 23, 34, 38, 48 5 (12)
Relationship with participants
Relationship established before study commencement 14 –18, 20, 22, 23, 27, 29, 30, 32, 33, 35, 37, 39, 42, 44, 61, 62 20 (47)
Participant selection
Selection strategy (eg, snowball, purposive, convenience,
comprehensive)
10, 12, 14 –16, 18, 20 – 22, 25, 29, 30, 33, 34, 37 –42, 44, 47, 53, 61, 62 25 (58)
Method of approach or recruitment 10 – 12, 14 – 18, 20, 22, 24, 28, 30, 31, 33, 34, 36 – 43, 47, 53, 61 – 63 29 (67)
Sample size 10 – 25, 27 – 44, 46 – 48, 53, 61 – 64 42 (98)
Number and/or reasons for nonparticipation 10, 16 – 18, 22, 28 – 30, 32, 33, 35, 36, 38 –40, 42, 44, 48, 53, 61, 62 21 (49)
Setting
Venue of data collection 10, 12 –20, 22, 28, 29, 31 – 34, 36, 37, 39, 41, 42, 44, 46– 48, 53, 61, 62, 65 30 (70)
Presence of nonparticipants (eg, clinical staff) 14, 16, 19, 20, 22, 32 – 34, 36, 37, 39, 44 12 (28)
Description of the sample 10 –24, 27 – 44, 46– 48, 53, 61 – 64 41 (95)
Data collection
Questions, prompts or topic guide 10, 12 – 24, 27, 28, 30 –43, 47, 53, 61, 62 34 (79)
Repeat interviews/observations 19, 30, 39 3 (7)
Audio/visual recording 13, 15 –18, 20 – 28, 30 – 38, 40– 42, 44, 47, 48, 53, 61 – 63 33 (77)
Field notes 10, 22, 26, 29– 31, 33, 34, 38, 42, 66 11 (26)
Duration of data collection (interview or focus group) 10, 15 – 20, 22 –24, 30, 31, 33, 36, 37, 40 – 42, 47, 48, 53, 61, 62 23 (53)
Translation and interpretation 13 – 15, 19, 26, 34 6 (14)
Protocol for data preparation and transcription 10, 11, 13, 15, 18, 20, 21, 23 –25, 28 – 38, 40 – 42, 44, 47, 48, 53, 61– 63, 67 33 (77)
Data (or theoretical) saturation 15, 18, 20, 30, 33, 36, 41, 47, 48, 53 11 (26)
Data analysis
Researcher/expert triangulation (multiple researchers
involved in coding and analysis)
10, 16 – 18, 20, 23, 24, 30, 31, 33, 34, 36 – 38, 40 – 42, 44, 48, 61, 62 22 (51)
Translation (specifi es language in which analysis was done) 26, 34 2 (5)
Derivation of themes or fi ndings (eg, inductive, constant
comparison)
10, 11, 13, 15 – 20, 23 – 25, 28 – 31, 33 – 38, 41, 42, 44, 46 – 48, 53, 61, 62, 64 32 (74)
Use of software (eg, NVivo, HyperRESEARCH, Atlas.ti) 18, 23, 26, 28, 29, 32, 35 – 37, 42, 48 11 (26)
Member checking (participant feedback on fi ndings) 24, 30, 31, 38, 47 5 (12)
Reporting
Participant quotations or raw data provided (picture, diary
entries)
10, 11, 13 –20, 22 – 24, 28 – 31, 33 – 38, 40– 42, 44, 46 –48, 53, 61, 62, 64 35 (81)
Range and depth of insight into participant perspectives (thick
description provided)
10, 11, 13 – 17, 20, 23, 24, 28 – 31, 33, 34, 37, 40, 42, 44, 48 21 (49)
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PEDIATRICS Volume 138 , number 3 , September 2016 7
TABL
E 3
Illu
stra
tive
Qu
otat
ion
s
Them
eQ
uot
atio
ns
Sou
rces
Bod
ily p
ower
less
nes
s fr
om s
eizu
res
B
ein
g ov
erta
ken
I fel
t an
xiet
y ev
ery
day
an
d I
was
afr
aid
to
lose
con
trol
. 10 10
, 15, 17
–19
, 46
I was
tal
kin
g an
d s
ud
den
ly m
y ar
ms
star
ted
to
shak
e an
d I
fell
off
the
chai
r on
th
e fl
oor.
It t
urn
ed d
ark
and
I d
on’t
rem
emb
er a
nyt
hin
g m
ore
un
til I
wok
e u
p a
t th
e
hos
pit
al. I
t w
as h
orri
ble
. 17
20, 24
, 28, 30
, 33,
36, 37
, 43
[It’
s lik
e] b
ein
g in
a n
igh
tmar
e re
ally
an
d y
ou c
an’t
rea
lly w
ake
up
or
just
som
eth
ing.
18
S
usc
epti
bili
ty t
o
ph
ysic
al h
arm
I wor
ry a
bou
t h
avin
g se
izu
res
and
wh
at w
ill h
app
en, ’
cuz
I’m n
ot a
wak
e . .
. p
rob
ably
kn
ock
my
hea
d o
r fa
ll to
th
e fl
oor
or I’
d b
ite
my
ton
gue.
18 10
, 15, 17
–19
, 23, 24
, 27 –
29, 32
, 33, 37
,
40, 4
2 – 44
, 46Th
e m
ach
ines
[EE
G],
I h
ate
them
, all
you
can
fee
l is
cold
goi
ng
onto
you
r h
ead
s an
d ja
gs g
oin
g in
you
r h
ead
s. 33
Fr
agili
ty o
f th
e b
rain
The
sym
bol
ic in
terp
reta
tion
of
the
bra
in a
s a
kin
d o
f su
per
ord
inat
e b
odily
org
an w
as c
entr
al t
o m
any
peo
ple
’s a
ccou
nts
. Th
e in
volv
emen
t of
th
e b
rain
in s
eizu
re
acti
vity
led
to
dee
p f
ears
ab
out
the
frag
ility
of
the
self
. 37
13, 14
, 17, 18
, 25,
37, 46
I hav
e th
e se
izu
re .
. . a
nd
th
en I
forg
et e
very
thin
g . .
. ev
eryt
hin
g th
at I’
ve d
one
that
day
. . .
eve
ryth
ing
that
I’m
goi
ng
to s
ay a
nd
usu
ally
it d
oesn
’t c
ome
bac
k
bec
ause
it’s
alm
ost
like
my
min
d h
as g
one
bla
nk.
18
You
r b
rain
can
’t t
ake
it s
o…I w
as w
orri
ed t
hat
on
e d
ay I
wou
ld w
ake
up
as…
a ve
geta
ble
bas
ical
ly. A
nd
I w
asn
’t, a
frai
d o
f d
yin
g… b
ut
if I’
m in
a w
hee
lch
air
…I
don
’t w
ant
my
life
ruin
ed b
y it
. 37
Al
ertn
ess
to
mor
talit
y
Man
y p
eop
le w
ith
ep
ilep
sy b
elie
ved
[th
ey]
shou
ld s
tay
away
fro
m la
kes,
riv
ers,
or
pon
ds
to a
void
th
e ri
sk o
f d
row
nin
g d
uri
ng
a se
izu
re. S
ome
par
tici
pan
ts
reco
un
ted
an
ecd
otes
ab
out
seri
ous
acci
den
ts t
hat
oth
er p
eop
le w
ith
ep
ilep
sy h
ad h
ad; m
ost
of t
hes
e ac
cid
ents
, oft
en in
volv
ing
dro
wn
ing,
had
en
ded
in d
eath
. 13
13, 15
, 18, 19
, 33,
34, 36
, 37, 44
I don
't w
ant
to d
ie. [
A]n
yth
ing
cou
ld h
app
en, y
ou s
ee t
his
ep
ilep
sy c
an h
app
en t
o yo
u, a
nyw
her
e yo
u k
now
. 36
In
cap
acit
atin
g
fati
gue
Mor
e co
mm
only
, ch
ildre
n a
nd
ad
oles
cen
ts e
xper
ien
ced
fat
igu
e as
a c
onti
nu
ous
occu
rren
ce t
hat
at
tim
es w
as m
ade
wor
se b
y a
seiz
ure
. [Th
is]
mad
e it
dif
fi cu
lt f
or
them
to
thin
k cl
earl
y an
d b
e av
aila
ble
to
par
tici
pat
e in
aca
dem
ic e
nd
eavo
rs. 18
10, 13
, 17, 18
, 20,
28, 33
, 37, 46
I’m c
onst
antl
y ti
red
. . .
in t
he
mor
nin
g an
d o
nce
I ta
ke t
hem
[se
izu
res]
du
rin
g sc
hoo
l . .
. I ju
st s
it t
her
e an
d I
wan
t to
fal
l asl
eep
du
rin
g ev
ery
clas
s. 18
I don
’t li
ke h
avin
g se
izu
res.
Aft
er a
sei
zure
is o
ver
I fee
l I c
an’t
do
anyt
hin
g. 20
Loss
of
pri
vacy
D
ecla
rati
ve d
isea
seP
eop
le w
ith
ep
ilep
sy m
igh
t h
ave
the
choi
ce o
f ei
ther
con
ceal
ing
or d
iscl
osin
g th
eir
dis
ease
un
less
th
e ex
pos
ure
is n
ot d
elib
erat
e an
d o
ccu
rs d
uri
ng
an a
ttac
k. 10
10, 15
, 18 –
20, 28
– 30
, 33, 4
4
I did
n’t
like
goi
ng
to s
choo
l if
I had
on
e so
I w
ould
sta
y at
hom
e fo
r ab
out
a w
eek
afte
rwar
d…
Bec
ause
I w
as s
care
d w
hat
peo
ple
wou
ld s
ay. 29
My
clas
s kn
ew t
hat
I w
as a
litt
le s
low
er t
han
th
e re
st o
f th
e cl
ass.
An
d s
o th
ey k
ind
of
fi gu
red
ou
t on
th
eir
own
. 30
H
um
iliat
ing
invo
lun
tary
acti
on
I hat
e w
hen
I fa
ll d
own
...I g
et m
ad a
t m
y se
izu
res
bec
ause
I d
on’t
like
th
em…
som
etim
es I
kin
d o
f h
it p
eop
le...
I don
’t r
eally
mea
n t
o h
it p
eop
le. 18
10, 15
, 17 –
19, 23
, 24, 27
–29
, 32, 33
, 37,
40, 4
2 – 44
, 46W
hat
rea
lly g
ets
you
is if
th
ey s
ee y
ou h
avin
g a
fi t.
I fi
nd
th
at r
eally
em
bar
rass
ing,
my
han
ds
star
t ge
ttin
g al
l jer
ky a
nd
th
en I
just
get
rea
lly s
elf-
con
scio
us
of it
an
d
that
can
be
real
ly e
mb
arra
ssin
g. 28
Ther
e is
no
par
t of
you
r b
ein
g th
at w
ants
to
even
th
ink
to m
ake
up
som
eth
ing
as h
um
iliat
ing
as h
avin
g a
seiz
ure
!...W
etti
ng
you
rsel
f, w
hic
h is
th
e m
ost
hor
rify
ing
thin
g yo
u c
ould
eve
r d
o in
pu
blic
. 38
U
nw
ante
d s
pec
ial
atte
nti
on
I can
’t d
o so
me
of t
he
stu
ff in
gym
cla
ss b
ecau
se I
mig
ht
get
hu
rt. I
hat
e n
ot b
ein
g ab
le t
o d
o so
me
thin
gs b
ecau
se o
f th
e se
izu
res.
31 15
, 23, 28
, 30, 3
1, 33
The
teac
her
ask
s m
y sc
hoo
lmat
es t
o ca
re f
or m
e m
ore.
15
I th
ough
t if
I ta
ke o
ne
lots
of
child
ren
will
get
sca
red
an
d I
don
’t li
ke it
wh
en lo
ts o
f p
eop
le s
ay ‘y
ou O
K?’ .
. . t
oo m
any
tim
es o
r cr
owd
me.
33
S
ocia
l
emb
arra
ssm
ent
of m
edic
ine
taki
ng
I hav
e p
eop
le m
ake
fun
of
me
a lo
t at
sch
ool b
ecau
se I
hav
e to
tak
e m
edic
ine
and
go
to t
he
doc
tor.
31 31
, 33, 47
Ines
cap
able
infe
rior
ity
and
dis
crim
inat
ion
Vu
lner
abili
ty t
o
pre
jud
ice
No
one
likes
me
bec
ause
I’m
a g
eek…
Bec
ause
I’m
in t
he
wei
rd c
lass
. 23 10
– 20
, 22
– 34
, 36
–41
, 44, 46
, 47
Yeah
, th
e fi
rst
2 ye
ars
wer
e ju
st a
bso
lute
, sh
eer
hel
l, w
ith
losi
ng
you
r jo
b, f
rien
ds
stay
aw
ay. .
. p
eop
le s
eem
to
dis
app
ear.
40
In t
he
pas
t 2
year
s, b
ecau
se o
f m
y ep
ilep
sy a
nd
eve
ryth
ing…
the
thou
ght
of s
uic
ide
has
bee
n in
my
hea
d…
I’d s
ay 4
to
8 ti
mes
…on
ce, I
had
th
e kn
ife
at m
y w
rist
and
my
mot
her
cam
e in
an
d I
just
pre
ten
ded
I w
as d
ryin
g it
. 18
In in
terv
iew
s fo
r w
ork,
I d
on’t
tel
l. I k
now
th
at p
eop
le h
ave
pre
-con
ceiv
ed n
otio
ns.
10
I hop
e th
at t
her
e is
a b
ette
r u
nd
erst
and
ing
of e
pile
psy
th
rou
ghou
t En
glan
d, s
o ot
her
ch
ildre
n w
ith
th
e co
nd
itio
n c
an le
ad n
orm
al li
ves
and
eve
ryon
e ar
oun
d t
hem
will
un
der
stan
d t
hei
r co
nd
itio
n! 28
by guest on July 8, 2020www.aappublications.org/newsDownloaded from
CHONG et al 8
Them
eQ
uot
atio
ns
Sou
rces
C
onsc
iou
snes
s of
abn
orm
alit
y
I’m n
ot r
eally
su
re if
I ca
n g
o th
rou
gh w
ith
th
ings
…I j
ust
don
’t f
eel t
hat
…I’m
ab
le t
o d
o so
me
of t
he
thin
gs t
hat
oth
er k
ids
are
able
to
do.
18 10
, 12
– 21
, 23 – 25
, 28
– 32
, 35,
37, 38
, 41,
43, 4
4, 46
[I w
ish
] I d
idn
’t h
ave
seiz
ure
s…I w
ould
be
a n
orm
al k
id a
nd
it w
ould
fee
l gre
at. 18
Bec
ause
I am
cu
red
, no
nee
d t
o te
ll an
yon
e…I d
on't
like
to
be
dif
fere
nt
from
my
frie
nd
s…I a
lso
will
not
let
my
futu
re b
oyfr
ien
d k
now
my
pas
t b
ecau
se h
e m
ay
thin
k I a
m s
tran
ge. I
wan
t to
be
a n
orm
al p
erso
n. 16
I am
afr
aid
of
hol
din
g m
y ow
n c
hild
ren
in m
y ar
ms
in c
ase
I hav
e a
seiz
ure
an
d le
t m
y ch
ild f
all m
any
tim
es w
hen
I w
as h
old
ing.
13
It c
ould
aff
ect
dif
fere
nt
job
s th
at I
do
bec
ause
I w
ant
to g
o in
to n
urs
ing
and
I h
ave
to b
e ca
refu
l th
at s
hif
t w
ork
doe
sn’t
aff
ect
me
bec
ause
lack
of
slee
p c
an t
rigg
er
min
e as
wel
l. 28
In
abili
ty t
o ac
hie
ve
acad
emic
ally
I’m c
onst
antl
y ti
red
…in
th
e m
orn
ing
and
on
ce I
take
th
em [
seiz
ure
s] d
uri
ng
sch
ool…
I ju
st s
it t
her
e an
d I
wan
t to
fal
l asl
eep
du
rin
g ev
ery
clas
s…it
just
wea
rs m
e
dow
n. 18
10
–19
, 23, 30
, 33 –
35, 38
, 40, 43
, 44
Wh
en it
com
es t
o sc
hoo
lwor
k or
an
yth
ing
like
I fee
l stu
pid
…I s
ay t
o m
ysel
f I’m
stu
pid
bec
ause
I ca
n’t
rem
emb
er w
hat
I’m
doi
ng.
18
Peo
ple
wit
h e
pile
psy
rep
orte
d d
isru
pti
on t
o th
eir
edu
cati
on, f
ailin
g to
att
end
cla
sses
on
a r
egu
lar
bas
is, w
ith
mos
t p
atie
nts
hav
ing
inco
mp
lete
pri
mar
y sc
hoo
l
edu
cati
on. 34
P
aren
tal s
ham
eM
y gr
and
mot
her
doe
sn’t
like
me
talk
ing
abou
t th
is s
tran
ge il
lnes
s. T
her
e is
a la
ck o
f aw
aren
ess
and
em
bar
rass
men
t re
late
d t
o th
is il
lnes
s. 10
10 – 13
, 16
– 20
, 23,
28, 29
, 33, 34
, 40,
43, 44
, 47M
y m
oth
er a
lway
s w
ante
d t
o ke
ep it
in t
he
fam
ily. S
he
did
n’t
wan
t th
e sc
hoo
l to
know
. 17
Li
mit
ing
soci
al
free
dom
Som
etim
es I
get
angr
y w
hen
I ca
n’t
go
to s
leep
over
s an
d t
hen
I ca
n’t
go
to f
rien
ds’
hou
ses
wh
en t
hey
invi
te m
e ov
er. 33
10, 11
, 13, 15
– 18
, 20, 22
, 23,
25, 28
–31
,
33, 44
, 47I a
m n
ot a
llow
ed t
o b
e le
ft a
lon
e at
hom
e b
y m
ysel
f…I h
ave
no
pri
vacy
at
all…
if I
am le
ft a
lon
e [a
nd
] on
e [s
eizu
re]
hit
s…I a
m s
ick
and
tir
ed o
f it
…I w
ant
som
e
free
dom
, I w
ant
to b
e ab
le t
o go
ou
t w
ith
my
teen
ager
fri
end
s, I
wan
t to
be
able
to
go b
ack
to s
choo
l…so
met
imes
I w
ish
I co
uld
hav
e a
show
er b
y m
ysel
f b
ut
I
know
it’s
not
saf
e. 18
I rea
lly w
ant
to g
et d
run
k ju
st o
nce
in m
y lif
e. 10
I th
ink
of t
he
dri
vin
g lic
ense
mos
t of
all.
It w
ill t
ake
a lo
ng
tim
e b
efor
e I’l
l get
my
dri
vin
g lic
ense
. An
d I’
m n
ot a
llow
ed t
o h
ave
dri
vin
g p
ract
ice
like
ever
ybod
y el
se.
Bu
t I g
o w
ith
my
dad
to
car
race
s. I
do
the
rep
air
wor
k on
th
e ca
r. 17
Ther
apeu
tic
bu
rden
an
d f
uti
lity
Aw
aiti
ng
a fa
ble
d
rem
issi
on
It’s
dif
fi cu
lt t
o ta
ke m
edic
atio
ns
ever
y d
ay, b
ut
it’s
tem
por
ary.
In f
ew m
onth
s, I’
m g
oin
g to
sto
p t
reat
men
t. 10
10, 11
, 17, 19
, 20,
29, 33
, 37, 44
The
child
fan
tasi
zes
abou
t th
e en
d o
f th
e d
isea
se b
ecau
se t
his
idea
ser
ves
as a
wis
h f
ulfi
llmen
t d
evic
e. T
he
child
dea
ls w
ith
th
e p
ain
of
not
bei
ng
able
to
enga
ge in
his
pre
ferr
ed a
ctiv
itie
s b
y fa
nta
sizi
ng
abou
t d
oin
g th
em w
hen
th
e d
isea
se g
oes
away
. 11
[S]o
oner
or
late
r if
I d
on’t
hav
e an
y se
izu
res,
I’ll
be
able
to
be
off
the
pill
s. A
nd
I’ll
like
may
be
hav
e m
ore
ener
gy a
nd
, you
kn
ow, i
t’ll
be
bet
ter.
Sch
oolw
ork,
hop
ing
that
I’ll
be
able
to
do
it b
ette
r, li
ke s
cien
ce. 18
U
nat
tain
able
clos
ure
Som
e p
eop
le t
alke
d a
bou
t liv
ing
in c
onst
ant
fear
of
hav
ing
a se
izu
re a
nd
wer
e u
nab
le t
o n
avig
ate
thei
r liv
es a
rou
nd
sei
zure
s; t
her
e w
ere
no
coor
din
ates
to
wor
k
wit
h a
nd
th
e fe
ar r
emai
ned
con
stan
t. 37
16, 19
, 23, 24
, 32,
33, 37
, 40, 41
I can
on
ly li
ve f
or t
oday
an
d u
nsu
re a
bou
t to
mor
row
fee
l ver
y sa
d. 13
So
now
th
at I’
ve h
ad f
ewer
[se
izu
res]
wit
h t
he
surg
ery
and
th
at I
am li
ke e
very
bod
y el
se, I
don
’t w
ant
to g
o b
ack
to b
ein
g th
at o
ther
per
son
bec
ause
I’m
tak
en o
ff
my
med
icat
ion
. 23
Ex
hau
stio
n f
rom
tria
ling
ther
apie
s
I ap
plie
d e
very
rem
edy
that
was
tol
d m
e ef
fect
ive,
incl
ud
e h
edge
hog
’s s
tom
ach
. 13 10
, 13, 28
, 29, 3
4, 38
, 40, 41
, 48
We
had
ab
out
a m
onth
wit
h n
o se
izu
res.
You
th
ink
you
hav
e fo
un
d a
med
icin
e th
at w
ill s
top
th
e se
izu
res.
Th
en t
he
hon
eym
oon
is o
ver.
Boo
m, b
ack
wit
h a
ven
gean
ce. 40
In
surm
oun
tab
le
sid
e ef
fect
s
Som
e d
ays
it’s
rea
lly h
ard
. Som
e d
ays,
wh
en y
ou d
on’t
fee
l goo
d, w
hen
you
’re
hav
ing
to s
tart
ou
t on
a h
igh
er d
osag
e of
med
s…An
d, t
ryin
g to
mai
nta
in, w
hile
you
r
bod
y’s
goin
g th
rou
gh h
ell. 38
10, 13
– 20
, 24,
28, 33
, 34, 37
, 38,
40
And
, it
may
be
on t
he
tip
of
you
r to
ngu
e, a
nd
you
can
’t s
ay it
. It
is p
art
of t
hat
mem
ory
thin
g, a
nd
par
t of
th
at is
med
icin
e. T
hat
lin
k is
gon
e. 38
The
med
icat
ion
doe
sn’t
mak
e m
e fe
el li
ke m
ysel
f. It
mak
es m
e sc
hiz
oph
ren
ic, b
asic
ally
. Tak
ing
the
med
icat
ion
did
not
sto
p m
e fr
om h
avin
g th
e se
izu
res.
I am
hav
ing
just
as
man
y se
izu
res
then
as
I am
now
. 40
Fi
nan
cial
bu
rden
You
may
hav
e ep
ilep
sy, b
ut
the
fact
th
at y
ou d
on’t
dri
ve b
ecau
se o
f yo
ur
epile
psy
doe
sn’t
qu
alif
y yo
u. I
f yo
u c
an w
alk
to t
he
bu
s st
op, y
ou d
on’t
qu
alif
y [f
or
tran
spor
tati
on a
ssis
tan
ce].
38
13, 34
, 38
[We
nee
d]
a w
ay t
o ge
t m
edic
atio
n w
ith
out
hav
ing
to p
ay a
n a
rm a
nd
a le
g if
you
’re
not
ear
nin
g en
ough
mon
ey t
o p
ay f
or it
. 38
O
verw
hel
min
g lif
e
dis
rup
tion
You
fel
t tr
app
ed b
y th
e m
edic
atio
ns.
Wh
en I
cam
ped
ove
rnig
ht,
I h
ad t
o ta
ke t
hem
. It
was
tro
ub
leso
me
wh
en y
ou s
taye
d o
uts
ide…
. 16 10
, 16, 17
, 19, 2
0, 24
, 28, 33
, 34, 3
8
It b
oth
ered
me
that
I h
ad t
o ta
ke a
ll th
e ta
ble
ts. I
t’s
ann
oyin
g …
an
d I
get
moo
dy
abou
t ta
kin
g ta
ble
ts w
hen
th
ey s
tick
in t
he
bac
k of
you
r th
roat
an
d t
hey
tas
te
dis
gust
ing
and
you
can
’t g
et r
id o
f th
e ta
ste.
28
TABL
E 3
Con
tin
ued
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PEDIATRICS Volume 138 , number 3 , September 2016 9
Them
eQ
uot
atio
ns
Sou
rces
Nav
igat
ing
hea
lth
car
e
U
nex
pec
ted
nec
essi
ty o
f
tran
siti
on
Now
I’ve
bee
n h
and
ed o
ver
to t
his
[n
ew d
octo
r] a
nd
he
seem
s lik
e h
e is
doi
ng
it b
ecau
se it
is a
job
, bu
t th
e ot
her
doc
tor
care
d a
bou
t th
e p
atie
nt…
He
wou
ldn
’t ju
st
tell
you
wh
at y
ou w
ante
d t
o h
ear
to g
et y
ou o
ut
of t
he
room
. 29
29, 64
Wit
h c
han
gin
g d
octo
rs…
’cau
se I’
m n
ot h
avin
g [fi
ts]
rig
ht
now
, he
mig
ht
dec
ide
to t
ake
me
off
[my
curr
ent
med
s] a
nd
I w
ill g
o d
oola
lly a
gain
. 29
Va
luin
g em
pat
het
ic
and
res
pon
sive
care
If I
hav
e a
poo
r em
otio
nal
bal
ance
, th
ere
is n
o se
nse
in g
ivin
g m
e an
y in
form
atio
n o
r p
ract
icin
g so
me
skill
s. H
ealt
h c
are
pro
vid
ers
shou
ld b
e ab
le t
o re
cogn
ize
the
nee
d f
or e
mot
ion
al s
up
por
t an
d t
o re
spon
d t
o th
at. 53
10, 24
, 25, 27
, 29,
35, 37
, 38, 40
, 44,
46,
47, 53
, 63
I hav
e an
un
der
stan
din
g d
octo
r, s
o, w
hen
ever
I go
to
the
doc
tor,
we
sit
dow
n a
nd
tal
k. I’
ve f
oun
d a
goo
d o
ne…
It’s
a b
less
ing.
38
[T]h
ere
also
nee
ds
to b
e ac
cess
to
cou
nse
ling,
or
ther
apy.
Th
at n
eed
s to
be
a p
art
of t
reat
men
t al
so. 38
Em
pow
erm
ent
thro
ugh
info
rmat
ion
I th
ink
any
fi n
din
g ou
t, I’
ve p
rob
ably
don
e m
ysel
f. I f
elt
that
th
ere
was
n’t
…en
ough
info
rmat
ion
…h
e ga
ve m
e n
o te
lep
hon
e h
elp
lin
es…
or a
nyt
hin
g lik
e th
at. 24
10, 11
, 13, 22
, 24,
28, 29
, 31, 34
, 35,
38, 39
,
42, 44
, 46,
47, 53
I exp
ecte
d t
he
nu
rses
an
d p
hys
icia
ns
to t
each
me
the
skill
s th
at I
nee
d t
o ta
ke c
are
of m
ysel
f. Al
so, I
exp
ecte
d t
hem
to
give
to
me
so m
uch
kn
owle
dge
th
at I
cou
ld
un
der
stan
d m
y d
isea
se a
nd
its
trea
tmen
t...I
kn
ow t
hat
th
e m
ore
skill
s an
d k
now
led
ge I
hav
e, t
he
mor
e in
dep
end
entl
y I c
an li
ve. 53
Som
etim
es I
can
not
un
der
stan
d t
he
nu
rses
’ an
d p
hys
icia
ns’
lan
guag
e. T
hey
use
th
eir
own
Lat
in…
I los
e m
otiv
atio
n. 53
Fr
agm
ente
d a
nd
inco
nsi
sten
t ca
re
I was
mis
dia
gnos
ed f
or 7
yea
rs, a
nd
I fa
ced
a lo
t...g
oin
g th
rou
gh t
he
dep
ress
ion
issu
es. T
he
doc
tors
qu
esti
oned
wh
eth
er I
was
mak
ing
this
up
in m
y h
ead
. My
fam
ily w
as e
ven
tau
ght
to ig
nor
e m
y se
izu
res.
Th
at I
was
mak
ing
them
up
, th
at I
was
doi
ng
it a
s an
att
enti
on-s
eeki
ng
dev
ice.
38
17, 19
, 27, 29
, 35,
38, 40
, 42, 44
Ner
vou
s th
at it
(ap
poi
ntm
ent)
wou
ld b
e ca
nce
lled
or
som
eth
ing
… a
nd
th
at’s
wor
se …
wai
tin
g al
l th
at t
ime
and
th
en t
hey
can
cel i
t. 42
Rec
onte
xtu
aliz
ing
to r
egai
n n
orm
alit
y
D
elin
eati
ng
dis
ease
from
iden
tity
I hav
e m
isse
d q
uit
e a
lot
of s
choo
l du
e to
my
epile
psy
bu
t I d
on’t
wan
t it
to
stop
me
doi
ng
anyt
hin
g. 14
10, 13
, 14, 16
, 17,
20, 23
, 24, 28
, 30,
32,
33, 38
, 44Th
at's
wh
at I
do,
I tr
y n
ot t
o le
t it
ru
n m
y lif
e…I t
ry t
o ju
st f
orge
t ab
out
it, I
go
out
wit
h m
y fr
ien
ds
a lo
t, a
nd
just
fee
l lik
e a
nor
mal
per
son
, I d
on't
fee
l lik
e a
dif
fere
nt
per
son
to
ever
ybod
y el
se, ’
cos
I kn
ow I’
m n
orm
al. 44
Ta
kin
g ow
ner
ship
The
only
ben
efi t
of
the
illn
ess
is a
bet
ter
cop
ing
wit
h li
fe, I
defi
nit
ely
con
trol
my
dis
ease
. 10 10
, 13, 15
– 20
, 23, 2
4, 28
, 30, 33
, 35, 3
7 – 39
,
43, 44
, 47,
64M
y m
oth
er a
lway
s w
ante
d t
o ke
ep it
in t
he
fam
ily. S
he
did
n’t
wan
t th
e sc
hoo
l to
know
. Bu
t to
me
it w
asn
’t h
ard
. I t
hin
k it
’s b
ette
r p
eop
le k
now
. So
I tol
d m
y te
ach
er
at s
choo
l. 17
I was
hav
ing
seiz
ure
s an
d s
ome
peo
ple
wer
e la
ugh
ing
at m
e th
ey w
ent,
“is
n’t
th
is f
un
ny,
”...e
ven
tual
ly I
got
the
guts
to
get
up
in f
ron
t of
th
e cl
ass
and
exp
lain
exac
tly
wh
at h
app
ens
[wh
en I
hav
e a
seiz
ure
]. 18
Gai
nin
g
per
spec
tive
and
mat
uri
ty
Tod
ay m
y at
titu
de
is d
iffe
ren
t. I’
m a
not
her
per
son
. It
hap
pen
ed f
or t
he
bes
t. T
he
illn
ess
enco
ura
ged
me
to g
row
up
an
d d
evel
op. 10
10, 17
, 20, 23
, 24,
30, 33
, 38, 44
, 47
An
d I
feel
like
I h
ave
bee
n c
hos
en f
or t
his
; th
is is
my
reas
on. T
his
is w
hat
I’m
her
e fo
r. O
ne
thin
g I h
ave
to r
emem
ber
, too
, is
that
eve
ryb
ody’
s go
t so
met
hin
g . .
.
they
’ve
got
to s
tru
ggle
wit
h. T
hat
’s w
hy
we
all h
ave
a p
urp
ose,
you
kn
ow. 38
S
ocia
l an
d s
pir
itu
al
con
nec
ted
nes
s
I use
d t
o si
t . .
. b
esid
e m
y fr
ien
d a
nd
he
was
dys
lexi
c an
d .
. . w
e w
ould
. . .
do
the
sam
e so
rt o
f ea
sy s
ub
ject
s to
geth
er w
ith
th
e te
ach
er .
. . t
hat
mad
e m
e fe
el .
. .
like
I was
not
th
e on
ly r
eally
slo
w c
oach
th
ere.
33
10, 13
, 15 – 18
, 20, 22
, 23, 2
8, 30
, 33, 34
, 36,
38 – 40
, 42, 44
, 47,
64
Gra
nd
mot
her
vis
its
us
alm
ost
ever
y d
ay. B
ut
she
har
dly
eve
r h
as s
eizu
res.
Bu
t w
e ta
lk a
bou
t it
a lo
t. S
he
is t
he
only
on
e w
ho
know
s h
ow it
fee
ls. S
he
and
I
un
der
stan
d e
ach
oth
er, b
ecau
se w
e h
ave
the
sam
e ex
per
ien
ces.
17
Som
e of
my
clos
e fr
ien
ds
stay
ed w
ith
me
so I
wou
ld n
ot f
eel b
ored
. We
chat
ted
an
d li
sten
ed t
o m
usi
c. T
hey
mad
e m
e fe
el h
app
y. 16
TABL
E 3
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caused some participants to
believe that they may suddenly die.
Participants were “afraid to die” 16
and this was expressed particularly
among adolescents who lived alone
or had a limited support network.
However, some participants
indicated that they would prefer to
die during a seizure than live a “life
ruined by” 38 brain damage.
Incapacitating Fatigue
The seizures could result in extreme
daytime fatigue and increased sleep
requirements. Consistently low energy
reduced participation in academic and
social activities, something participants
found especially frustrating: “I just sit
there and I want to fall asleep during
every class...it just wears me down.” 19
One participant stated that “she had
been asleep during all her primary
school years.” 19
Loss of Privacy: Declarative Disease
Participants resented the
embarrassingly exhibitive nature
of seizures that put them on public
display. Some were frustrated that
they were unable to selectively
disclose their disease. They “didn’t
want to have any more seizures, not
at school or at home…afraid someone
will find out what happens with [their]
illness.” 16 In school, participants also
believed their “slowness” revealed
their disease to their classmates.
Humiliating Involuntary Action
The complete loss of motor control
during seizures was described by
participants as “disgraceful, ” 18
especially if they knew others
had seen them. They were
“self-conscious” 29, 34 of “wetting
[themselves]... in public, ” 39 “throwing
things around, ”18 and “saying
strange things.” 18 Due to sudden
mood changes, some felt they
became irrepressibly aggressive, and
afterward felt ashamed.
Unwanted Special Attention
Some wanted privacy and felt
that others’ incessant “worrying, ”
“overprotectiveness, ” 29 or
questioning about their seizures,
medications, and absenteeism was
tiresome and intrusive. Perceived
parental overprotection in the form
of constant monitoring also made
participants feel misunderstood.
They resented having people
“crowd” 34 and fret over them during
schoolground seizures. Some were
“annoyed” 34 when teachers restricted
their physical activity (eg, gymnastics
or school trips) or imposed special
rules such as sitting at the front of
class. Others felt they were teased
because they were in a special
education program.
Social Embarrassment of Medicine Taking
Some participants were required to
take medications at school or during
social gatherings such as sleepovers.
They were embarrassed when asked
“how many [tablets they] had to
take” 34 and became “mad” 32 when
others teased or interrogated them
about their treatment: “I am on the
ketogenic diet and kids keep asking
10
FIGURE 2Thematic schema.
by guest on July 8, 2020www.aappublications.org/newsDownloaded from
PEDIATRICS Volume 138 , number 3 , September 2016
me ‘What is that you are eating? Why
do you gotta take a syringe, is that a
shot?’” 32
Inescapable Inferiority and Discrimination: Vulnerability to Prejudice
Participants believed that others
viewed people with epilepsy as
contagious, “dangerous” or “weirdos, ”
and as having a “mental illness.” 11
They reported prejudice, exclusion,
and bullying from friends, neighbors,
and employers. Some avoided
using the “epilepsy word” 11 at job
interviews because they would “fail
to get the job, ” 45 or even among their
“good friends” 16 because it “repels
people.”11 Many younger participants
experienced “shame, ” 11 isolation, and
grief daily. Several withdrew socially
and wanted to leave their current
school, move house, or take their life.
Consciousness of Abnormality
Some older participants defined
themselves by their disease, feeling
“less of a person” and “unable to do
anything.” 20 As sexual intercourse
could trigger seizures and epilepsy
could be inheritable, they worried
about being unable to find a partner
or begin a family. Female participants
expressed concerns about fertility,
fetus malformation, breastfeeding
while on antiepileptic drugs,
and dropping their baby during
myoclonic jerks. Older participants
felt their lives disrupted by the loss
of meaningful roles and having to
depend more on their family and
friends compared with others.
Participants thus were in constant
pursuit of an idealized “normal self, ”
which they believed would be
achieved at remission.
Inability to Achieve Academically
Cognitive impairment, memory
difficulties, and attention problems
cause participants to feel “slow”
compared with their classmates,
unable to “catch up” and requiring
teachers to repeat things “over and
over.” 16 This perceived intellectual
inferiority was discouraging, and
some participants believed that their
“schooling had gone to waste.” 12
Participants also missed school due
to hospital admissions or doctor
appointments.
Parental Shame
Participants felt disappointed by their
parents’ shame regarding epilepsy,
displayed in their attempts to hide the
diagnosis from the participants, or
keep the illness a family secret. They
felt similarly isolated and abnormal
when their families reacted fearfully
to seizures or viewed epilepsy as a
“strange illness.” 11
Limiting Social Freedom
Social limitations placed on
participants by their family and
practitioners made them feel
excluded from their peer group. They
were frustrated at not being allowed
to attend parties, consume alcohol,
and play sports or computer games,
as these could trigger seizures. In
some instances, they gave up on
social activities: “I don’t go out
anymore because I can’t do the things
my friends do, so why bother?” 29
Many teenage participants were
frustrated by the longer length of
time it would take for them to obtain
their driver’s license.
Therapeutic Burden and Futility: Awaiting a Fabled Remission
Participants viewed epilepsy as
“temporary and controllable.” 11 Many
believed they would “grow out of
epilepsy” 34 in late adolescence and no
longer require medications. Holding
hope for remission helped them
cope with the present challenges of
epilepsy, as 1 participant stated, “I’m
waiting for the moment when I’ll
speak about epilepsy as history.” 11
Those who realized that they
were unlikely to go into remission
struggled with disappointment.
Some adolescents felt they had been
deceived by clinicians and refused to
attend further appointments.
Unattainable Closure
Due to prognostic uncertainty,
participants felt insecure during
periods of remission, were wary of
therapeutic changes, and felt they
could only “try” 25 to withdraw from
medication. Participants preferred
to discontinue medications during
stable life circumstances (ie, not
while traveling or changing schools).
Even after successful withdrawal
of medications, many expressed
apprehension that their seizures
might return, and wanted to know
“how long before [they could] start
breathing.” 25
Exhaustion From Trialing Therapies
Participants had to invest time and
energy to search for appropriate
treatment. Those with active epilepsy
were keen to “try anything if [they
thought] it would work, ” 31 including
both alternative and Western
medicine. However, repeated
treatment failure was mentally
and physically draining. Some
participants saw therapeutic success
as a short-lived “honeymoon” and
lost confidence in their abilities to
overcome epilepsy. 41
Insurmountable Side Effects
The relentless side effects of
medications, including poor
concentration, weight gain,
headaches, and abdominal pain
interfered with participants’ daily
life, academic performance, and
self-esteem. They believed their
medication to be “a dope, ” 20 “worse
than the seizures, ” 25 and a “terrible
but absolute necessity.” 41 Some
chose to discontinue drugs without
consulting their doctors.
Financial Burden
Epilepsy was costly due to the
ongoing high cost of medications and
lack of money or insurance coverage
to pay for them. Older participants
in the United States believed it was
unjust that epilepsy did not qualify
for Social Security services, especially
11 by guest on July 8, 2020www.aappublications.org/newsDownloaded from
CHONG et al
if controlled, and struggled to receive
government assistance as a result. 39
They wanted specific support
in applying for disability status,
concession for medications, and
securing adequate employment.
Overwhelming Life Disruption
Several participants struggled
initially with routinizing medications
and remembering to take them
as prescribed. Participants were
“tired of the medicine, ” 21 due to
the quantity, size, and unpleasant
taste of the tablets. One participant
explained, “Swallowing tablets at the
start...I found it dead hard, I went
through about 8 tablets a day before I
could get the hang of it.” 34
Navigating Health Care: Unexpected Necessity of Transition
Some felt unprepared to transfer to
adult services, as they had believed
their epilepsy would resolve during
childhood. They described this
phase as particularly confusing
and frightening. After transfer,
participants felt forgotten and left
“high and dry” 36 by adult health care
professionals due to infrequent clinic
visits. Because they had not prepared
for disease chronicity, many also
did not feel capable of taking
responsibility for self-management.
Valuing Empathetic and Responsive Care
Participants appreciated clinicians
who provided “emotional support” 57
by actively addressing social aspects
of their disease, including stigma
and depression, and sharing the
experiences of other adolescents
with chronic disease. Thus, they felt
empowered to broach topics not
discussed at home and to actively
participate in self-management.
Empowerment Through Information
Being informed about
epilepsy, seizure triggers, and
self-management bolstered
participants’ confidence in their
ability to manage their disease,
cope with stigma, and live
independently. 23 Participants felt
insecure, disengaged, and excluded
from their care when “doctors did
not provide information about the
condition, ” 14 only “talked to my mum, ” 23
or used “hospital language.” 18
Teenage female participants wished
for more information about fertility
and pregnancy.30 Participants also
desired verbal information to be
reinforced with accessible, relevant
written material, such as leaflets.
Fragmented and Inconsistent Care
Participants experienced diagnostic
delays that made them feel anxious,
depressed, and think they had
inexplicable cognitive impairment.
Several were “disappointed and
shocked” 43 at the prolonged waiting
times to see a specialist, especially
given the unpredictability of their
seizures 43 and difficulties with
memory such that they may struggle
to recall relevant clinical information.
Continuity of care provided by
clinicians whom they trusted caused
participants to feel more comfortable
and secure.
Recontextualizing to Regain Normality: Delineating Disease From Identity
Over time, some participants,
especially those with controlled
epilepsy, accepted their diagnosis
and began to see themselves as
“people with epilepsy” as opposed to
“epileptic patients.” 11 They stressed
that even though the disease had
an influence on them, they did
not want it to “stop [them] from
doing anything.” 15 They believed
themselves to be normal and chose
to live “in the moment.” 17 Younger
participants with less understanding
of the possible serious ramifications
of epilepsy saw themselves as
“healthy individuals” whose health
was only “coincidentally interrupted
by seizures.” 11
Taking Ownership
Participants gained self-confidence
by claiming responsibility for seizure
prevention and disease management,
such as by being adherent to
medications or avoiding seizure
triggers. Some educated their friends
about the condition so they might
have help during a seizure, whereas
others educated peers in response
to bullying. Participants also chose
personal ways to emotionally cope
with their illness. For instance, some
ignored familial pressure to keep
their disease a secret, and disclosed
epilepsy to friends for social
support. 11
Gaining Perspective and Maturity
Some participants believed they
were more mature than their peers,
as their disease had encouraged
them “to grow up and develop” 11
and appreciate “what is important in
life.” 18 Others saw their condition as
giving them a “purpose, ” 39 providing
them with the opportunity to
empathize with and “change [others’]
lives.” 39 Participants also saw their
disease from a broader perspective,
relating their experience to others
who may have more severe disease.
Social and Spiritual Connectedness
Understanding and support provided
by family, friends, religion, other
chronic illness sufferers, and
support groups helped to reinforce
coping strategies. Participants felt
encouraged when they shared their
experiences and when others assisted
them in employment opportunities or
during a seizure, such as by “holding
[their] hand.” 11 Several participants
described counting on their parents
to remind them to take medication,
and felt they could tell their family
“everything.” 16
DISCUSSION
Children and adolescents perceive
that epilepsy forces them to
relinquish their sense of privacy,
12 by guest on July 8, 2020www.aappublications.org/newsDownloaded from
PEDIATRICS Volume 138 , number 3 , September 2016
bodily control, normality, freedom,
and confidence to participate in
school and social activities. They
are overwhelmed by the daily
uncertainties attributed to the
unpredictable timing and potential
harm from seizures, side effects
of ongoing treatment, and the
impermanence of remission. The
transition to adult services, which
for some is unexpected, and the
variability in care they receive
intensifies the treatment burden.
However, young patients feel
empowered for self-management
when provided with clinician support
and relevant information about
epilepsy, treatment, and broader
psychosocial impacts (eg, family
planning). To cope, some consciously
disaggregate the disease from their
identity, take control of their health,
maintain hope for remission, and
accept support from family and social
networks.
Although many experiences and
perspectives were common across
patient populations, some differences
were apparent based on age and
disease severity. Feelings of loss and
abnormality tended to be expressed
more strongly by older adolescent
patients. As young adults, they were
aware of the potentially serious
ramifications of epilepsy on their
future, including their independence,
school performance, vocation, and
relationships. Teenage patients were
more frustrated by social limitations
on partying, drinking, and sleepovers
that differentiated them from their
peers. Patients with more severe,
frequent, or uncontrolled seizures
contended with disempowerment
and seemed less able to delineate
epilepsy from their identity. They
seemed more willing to trial
therapies that may work and some,
on being told they would not achieve
remission, chose to disengage from
the health care system, deeming
further treatment or follow-up to be
futile. Those with milder, controlled
epilepsy seemed better able to accept
epilepsy, and were more optimistic
about the future.
Children and adolescents with
epilepsy report lower QoL compared
with their well peers. This is
especially so in older patients, or
patients with frequent or severe
seizures, such as partial epilepsy. 1, 5, 7 – 48
Psychological, social, and behavioral
domains are particularly affected,
causing anxiety, poor self-esteem,
and reduced social interactions.68, 69
Our findings offer a detailed
explanation for this observation;
children and adolescents feel
overshadowed by anxiety regarding
seizure occurrence, fear of social
exclusion, and anticipation of
failure in future endeavors.
They also experience physical,
mental, and emotional fatigue
due to the burden of disease and
treatment. Hope for remission
provides limited consolation,
particularly for older adolescents, as
they are unable to predict whether
this will occur, or how long it may
last.
A recent study found that peer
and parental support is the most
important factor in health-related
QoL for children. 9 Our findings
concur with this, as children with
epilepsy believed that strong social
support enabled them to accept
the disease. However, our study
also highlights that stigma from
family, peers, and employers may
cause children with epilepsy to feel
isolated and depressed. Familial
shame is detrimental to children’s
adjustment to their diagnosis and
self-acceptance.
Children and adolescents with other
chronic and life-limiting illnesses
also experience a loss of normality
and control over their bodies due
to lifestyle restraints and transition
difficulties. 23, 70 –73 However, what
may be unique in epilepsy is that
children are conscious about
the visibility of their condition,
particularly because of seizures,
and feel they suffer consequent
discrimination. 11, 16, 20, 21, 29, 30, 34, 45, 48
They are unable to protect their own
privacy regarding their diagnosis,
and constantly feel susceptible to
injury.14, 15, 18, 19, 26, 27, 38, 46, 47
Our review involved a comprehensive
search and independent assessment
of the transparency of study
reporting. Research triangulation
was achieved, enabling the breadth
of data to be captured. Software
was used to code the data, allowing
for an auditable development of
our findings. However, our study
has some limitations. The views
of patients with well-controlled
epilepsy or those with severe mental
health or cognitive comorbidities
may be underrepresented, due to
their limited participation in hospital-
based studies and/or interaction
with the health care system.
Furthermore, our review included
the experiences of children treated in
low-income countries and different
health systems. These views may be
less applicable to certain contexts,
influencing the transferability of
our findings. However, to ensure
transparency, we stated the countries
in which these studies were
conducted, and provided references
to the studies. From this, the readers
may assess the transferability of the
findings to their own setting.
We used thematic synthesis to
analyze our findings. The process of
translation, through the development
of descriptive and analytical themes,
can be carried out in a rigorous
way that facilitates transparency of
reporting. 53, 54, 74 Some may argue
against thematic synthesis, as
the findings of individual studies
can be decontextualized and the
concepts identified in 1 setting
may not be applicable to others.
However, reviewers are able to
transfer themes from 1 situation
and can check that each transfer is
valid. 53 Qualitative meta-syntheses
have been used in other fields to
improve understanding and practice,
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CHONG et al
including nephrology, geriatrics, and
gastroenterology.61, 64, 75
Both raw data from children (in the
form of quotations) and discussion of
the data from authors of the studies
were included. Eight (19%) studies
did not provide quotations (ie, raw
data from children) ( Table 2), so we
included the author’s summary and
description of their experiences. We
only included text in the discussion
section that directly reflected
children’s perspectives.
There are several challenges
associated with pediatric epilepsy.
Table 4 details suggestions for
clinical practice. Nonadherence
to treatment and problems with
self-management remains a major
challenge. It is estimated that 38%
to 50% of children are nonadherent
to their antiepileptic medication
within the first 6 months of
initiating therapy. 62, 63 This may
be due to their desire to appear
and feel normal, the unrelenting
side effects of medication, and
disempowerment. Treatment failure
also can result in patients losing
confidence in traditional health care
and disengaging from the system.
To promote empowerment and
independence in self-management,
we suggest involving children in
age-appropriate discussions and
education on the disease processes,
self-management (such as avoiding
sleep deprivation), and treatment
options.
In epilepsy, there are some distinct
difficulties with transition from
pediatric to adult health care. Some
adolescents believe their epilepsy
will resolve during childhood, and
therefore feel unprepared to accept
the chronicity of their disease or
assume responsibility for self-
management. This suggests that
clinicians need to address patient
14
TABLE 4 Suggestions for Clinical Practice
Domain Suggested Strategies and Action
Psychosocial support • Provide access to support groups of other epilepsy sufferers, or other children/adolescents with chronic disease
• Offer specifi c support in applying for disability status, concession for medications
• Provide counseling on psychosocial aspects of disease, such as stigma, depression, and access to school counsellors for
further support outside of a clinical setting
• Provide support by sharing the experiences of others with chronic disease
• Provide explicit counseling for children in remission, to address their anxiety of seizures returning, and adjusting to a “normal”
life
Provision of information • Educate on self-management of epilepsy (eg, minimizing sleep deprivation)
• Educate on genetic transmission of epilepsy
• Communicate directly with the child/adolescent, limit the use of medical jargon: information about disease, seizure triggers,
self-management
• Discuss chronicity of epilepsy and likelihood of remission with patients and their family. Ensure patients are prepared for the
potential transition to adult health care, and encourage early responsibility for self-management
• Advise parents and address “perceived” fear and shame associated with seizures, discuss the frustrations children/adolescents
face with limited social freedom, encourage a supportive home environment
• Educate on medications available, and the advantages and disadvantages of each
• Educate on potential side effects of medications and provision of counter measures for this (eg, a healthy diet and exercise to
counter weight gain)
• Reinforce information with accessible relevant written material, such as leafl ets
Schooling and employment • Facilitate liaisons between clinician, family, and school teachers
o Form school study groups or peer support
o Provide school material that could be reviewed at home, such as video-recorded classes
o Provide catch-up classes outside of school environment or school hours to address academic diffi culties, but reduce
publicity of disease
• Provide access to careers advisors to explore employment opportunities early
o Research fl exible job opportunities (eg, work from home), facilitate access to government programs to support youth
employment
• Liaise with employers to educate on the disease and implement workplace adjustment policies (eg, no work with excessive
screen time or heavyweight machinery, possibility of increased sick leave)
• Offer specifi c assistance with managing publicity of disease at school and workplace
o Discuss strategies for disclosure of illness to school mates, or work colleagues (eg, through education)
Navigating health care • Provide early referral to specialized diagnostic services
• Facilitate continuity of care throughout child child/adolescent’s interaction with health care system
• Continue liaison with adult health care services after transfer
• Discontinue or change medications during stable life circumstances, not while traveling or changing schools
Multidisciplinary care • Deliver coordinated care with psychologists and psychiatrists to address psychosocial aspects of epilepsy
• Facilitate access to community-based tutoring programs to assist children with academic performance
• Partner with community services to provide opportunities for volunteering or work experience, to support patients in feeling
involved in the community, and preparing for work life
• Liaise with social workers to navigate government benefi t schemes and applying for Social Security disability benefi ts
• Partner with community services to provide transport to and from work
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PEDIATRICS Volume 138 , number 3 , September 2016
expectations regarding the likelihood
of remission from the onset of care,
as disappointment can potentially
lead to disengagement from health
services. This will also help in
improving readiness for transition
and self-management.
Our findings also confirmed the
limited access to government
organizations and assistance by
health care providers, patient
advocates, and patients themselves. 7
We suggest practitioners and
allied health professionals support
adolescents and young adults with
epilepsy in applying for disability
status, attaining concession for
medications, and securing adequate
employment. In the United States,
although epilepsy is included in
the Americans With Disability Act,
patients are not fully protected from
employment discrimination, and
Social Security disability benefits may
be withheld in cases of controlled
epilepsy. 65
Our findings also suggested that
those with epilepsy face major
challenges in attaining employment.
Liaising with school career advisers
to investigate “risks” associated with
certain jobs, such as long hours and
memory work, can combat this. 66
Researching flexible job alternatives,
such as those with the option
to work from home, also can be
helpful. Clinicians also may consider
providing work-related guidance
on managing the condition in the
workplace, including sick leave and
whether epilepsy is a recognized
medical condition. A closer
open dialogue among clinicians,
patients, and employers can assist
in introducing work adjustment
policies, such as allocating those with
epilepsy roles that do not involve
extended time at computer screens
or with machinery. To facilitate
access to a broader range of jobs,
community transport services can
be used. Table 4 presents some
additional suggestions.
Although our review identified a
broad range of patient perspectives,
there are some knowledge gaps.
Comprehensive and validated
epilepsy-specific QoL instruments, for
example the Adolescent Psychosocial
Seizure Inventory are available, 67 but
may be further adapted to capture
patient-relevant domains relating to
concerns about the fragility of the
brain, familial reaction, satisfaction
with health care (including
information), and preparedness for
transition to adult services. Parent-
proxy report measures also may be
a useful addition to the child’s self-
assessment to provide insight into
the family dynamics of coping with
epilepsy.
Randomized controlled trials
have demonstrated the efficacy of
supportive and problem-solving
programs in improving treatment
adherence. 76 Further randomized
controlled trials are needed to
investigate the impact of age-
appropriate education on epilepsy
and seizure management, and
interventions to improve patient
QoL. 57 More research is recommended
to assess perceptions and concerns
about fertility and pregnancy in
adolescent patients with epilepsy, as
these topics had not been addressed
in depth in current studies. 30 Further
research is also warranted to address
patient concerns regarding the
heritability of the disease.
Children and adolescents
living with epilepsy experience
vulnerability, disempowerment, and
discrimination. Treatment failure
and prognostic uncertainty can
raise doubt about the attainment of
remission or future independence.
Treatment and management should
address the psychosocial needs of
patients regarding stigma, present
lifestyle limitations, and future
concerns. These suggestions may
inform strategies for practice and
research that may contribute toward
the improved QoL, therapeutic
satisfaction, and health outcomes
of children and adolescents with
epilepsy.
15
ABBREVIATION
QoL: quality of life
DOI: 10.1542/peds.2016-0658
Accepted for publication Jun 6, 2016
Address correspondence to Allison Tong, PhD, Centre for Kidney Research, Kids Research Institute, The Children’s Hospital at Westmead, Westmead, NSW 2145,
Sydney, Australia. E-mail: allison.tong@sydney.edu.au
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2016 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no fi nancial relationships relevant to this article to disclose.
FUNDING: No external funding. Ms Chong is supported by The University of Sydney Neuroscience Network Research Scholarship. Dr Tong is supported by the
National Health and Medical Research Council Fellowship (1106716).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential confl icts of interest to disclose.
by guest on July 8, 2020www.aappublications.org/newsDownloaded from
CHONG et al
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Craig, Angela Ju, Camilla S. Hanson and Allison TongLauren Chong, Nathan J. Jamieson, Deepak Gill, Davinder Singh-Grewal, Jonathan C.Children's Experiences of Epilepsy: A Systematic Review of Qualitative Studies
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DOI: 10.1542/peds.2016-0658 originally published online August 10, 2016; 2016;138;Pediatrics
Craig, Angela Ju, Camilla S. Hanson and Allison TongLauren Chong, Nathan J. Jamieson, Deepak Gill, Davinder Singh-Grewal, Jonathan C.Children's Experiences of Epilepsy: A Systematic Review of Qualitative Studies
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by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397. the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2016has been published continuously since 1948. Pediatrics is owned, published, and trademarked by Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
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