REVIEW ARTICLE PEDIATRICS Volume 138, number 3, September 2016:e20160658 Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies Lauren 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, PhD a,b abstract CONTEXT: 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. a Sydney School of Public Health and d Discipline of Paediatrics and Child Health, University of Sydney, Sydney, New South Wales, Australia; b Kids Research Institute, c T.Y. Nelson Department of Neurology, and e Department of General Medicine, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia; and f School 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 final 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 by guest on July 8, 2020 www.aappublications.org/news Downloaded from
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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
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 (%)
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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,
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.
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CHONG et al
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