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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 May 23, 2020 www.aappublications.org/news Downloaded from

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Page 1: Children’s Experiences of Epilepsy: A Systematic Review of ... · PEDIATRICS Volume 138 , number 3 , September 2016 :e 20160658 REVIEW ARTICLE Children’s Experiences of Epilepsy:

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

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Illu

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Qu

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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

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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

Con

tin

ued

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CHONG et al

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.

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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

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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,

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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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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: [email protected]

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.

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REFERENCES

1. Russ SA, Larson K, Halfon N. A

national profi le of childhood epilepsy

and seizure disorder. Pediatrics.

2012;129(2):256–264

2. Selassie AW, Wilson DA, Malek AM,

et al; Centers for Disease Control and

Prevention (CDC). Premature deaths

among children with epilepsy-South

Carolina, 2000–2011. MMWR Morb

Mortal Wkly Rep. 2014;63(44):989–994

3. Berg AT, Nickels K, Wirrell EC, et al.

Mortality risks in new-onset

childhood epilepsy. Pediatrics.

2013;132(1):124–131

4. Ballaban-Gil K, Rapin I, Tuchman R,

Shinnar S. Longitudinal examination

of the behavioral, language, and

social changes in a population of

adolescents and young adults with

autistic disorder. Pediatr Neurol.

1996;15(3):217–223

5. Shinnar S, Pellock JM. Update on

the epidemiology and prognosis of

pediatric epilepsy. J Child Neurol.

2002;17(1 suppl 1):S4–S17

6. Sillanpää M, Shinnar S. Long-term

mortality in childhood-onset epilepsy.

N Engl J Med. 2010;363(26):2522–2529

7. Moshé SL, Perucca E, Ryvlin P, Tomson

T. Epilepsy: new advances. Lancet.

2015;385(9971):884–898

8. Aliasgharpour M, Dehgahn Nayeri

N, Yadegary MA, Haghani H. Effects

of an educational program on self-

management in patients with epilepsy.

Seizure. 2013;22(1):48–52

9. Fayed N, Davis AM, Streiner

DL, et al; QUALITÉ Study Group.

Children’s perspective of quality

of life in epilepsy. Neurology.

2015;84(18):1830–1837

10. Ferro MA. Risk factors for health-

related quality of life in children with

epilepsy: a meta-analysis. Epilepsia.

2014;55(11):1722–1731

11. Admi H, Shaham B. Living with

epilepsy: ordinary people coping with

extraordinary situations. Qual Health

Res. 2007;17(9):1178–1187

12. Anand D, Anand R. Epilepsy and

the child-parental coping and

children’s attitude. J Psychosom Res.

2014;9(1):33–44

13. Asindi AA, Eyong KI. Stigma on Nigerian

children living with epilepsy. J Pediatr

Neurol. 2012;10(2):105–109

14. Aydemir N, Trung DV, Snape D, Baker

GA, Jacoby A; CREST Study Team.

Multiple impacts of epilepsy and

contributing factors: fi ndings from

an ethnographic study in Vietnam.

Epilepsy Behav. 2009;16(3):512–520

15. Baker GA, Hargis E, Hsih MM-S, et al;

International Bureau for Epilepsy.

Perceived impact of epilepsy in

teenagers and young adults: an

international survey. Epilepsy Behav.

2008;12(3):395–401

16. Chen H-J, Chen Y-C, Yang H-C, Chi C-S.

Lived experience of epilepsy from the

perspective of children in Taiwan.

J Clin Nurs. 2010;19(9–10):1415–1423

17. Chiu YP, Lee TY, Lin KL, Laadt VL.

Adjusting to a seizure-free “new

normal” life following discontinuation

of antiepileptic drugs during

adolescence. Epilepsy Behav.

2014;33:54–58

18. Eklund PG, Sivberg B. Adolescents’

lived experience of epilepsy. J Neurosci

Nurs. 2003;35(1):40–49

19. Elliott IM, Lach L, Smith ML. I just

want to be normal: a qualitative

study exploring how children

and adolescents view the impact

of intractable epilepsy on their

quality of life. Epilepsy Behav.

2005;7(4):664–678

20. Galletti F, Rinna A, Acquafondata C. An

insight into children’s and adolescents’

experience of seizures and epilepsy.

Seizure. 1998;7(4):309–316

21. Hightower S, Carmon M, Minick P.

A qualitative descriptive study of

the lived experiences of school-aged

children with epilepsy. J Pediatr Health

Care. 2002;16(3):131–137

22. Hodgman CH, McAnarney ER, Myers

GJ, et al. Emotional complications

of adolescent grand mal epilepsy.

J Pediatr. 1979;95(2):309–312

23. Houston EC, Cunningham CC, Metcalfe

E, Newton R. The information needs

and understanding of 5–10-year old

children with epilepsy, asthma or

diabetes. Seizure. 2000;9(5):340–343

24. Hum KM, Smith ML, Lach L, Elliott IM.

Self-perceptions of social function 2

years after pediatric epilepsy surgery.

Epilepsy Behav. 2010;17(3):354–359

25. Kilinç S, Campbell C. The

experience of discontinuing

antiepileptic drug treatment: an

exploratory investigation. Seizure.

2008;17(6):505–513

26. Hosseini N, Sharif F, Ahmadi F,

Zareh M. Main concerns of Iranians

with epilepsy. Epilepsy Behav.

2010;17(4):600

27. Mulligan J. Seizures make me a little

bit lost: children’s descriptions of their

epilepsy. Epilepsy Curr. 2013;13:24–25

28. Kyngäs H. Support network of

adolescents with chronic disease:

adolescents’ perspective. Nurs Health

Sci. 2004;6(4):287–293

29. Lewis A, Parsons S. Understanding of

epilepsy by children and young people

with epilepsy. Eur J Spec Needs Educ.

2008;23(4):321–335

30. Lewis SA, Noyes J. Effective process

or dangerous precipice: qualitative

comparative embedded case study

with young people with epilepsy and

their parents during transition from

children’s to adult services. BMC

Pediatr. 2013;13:169

31. McCorry D, Marson T, Jacoby A.

Understanding routine antiepileptic

drug decisions: a qualitative analysis

of patients’ accounts of hospital

consultations. Epilepsy Behav.

2009;14(1):210–214

32. McNelis AM, Buelow J, Myers J,

Johnson EA. Concerns and needs

of children with epilepsy and

their parents. Clin Nurse Spec.

2007;21(4):195–202

33. Micallef S, Spooner CG, Harvey AS,

Wrennall JA, Wilson SJ. Psychological

outcome profi les in childhood-onset

temporal lobe epilepsy. Epilepsia.

2010;51(10):2066–2073

34. Moffat C, Dorris L, Connor L, Espie

CA. The impact of childhood epilepsy

on quality of life: a qualitative

investigation using focus group

methods to obtain children’s

perspectives on living with epilepsy.

Epilepsy Behav. 2009;14(1):179–189

16 by guest on May 23, 2020www.aappublications.org/newsDownloaded from

Page 17: Children’s Experiences of Epilepsy: A Systematic Review of ... · PEDIATRICS Volume 138 , number 3 , September 2016 :e 20160658 REVIEW ARTICLE Children’s Experiences of Epilepsy:

PEDIATRICS Volume 138 , number 3 , September 2016

35. Mushi D, Hunter E, Mtuya C, Mshana

G, Aris E, Walker R. Social-cultural

aspects of epilepsy in Kilimanjaro

Region, Tanzania: knowledge

and experience among patients

and carers. Epilepsy Behav.

2011;20(2):338–343

36. Ridsdale L, Kwan I, Morgan M. How can

a nurse intervention help people with

newly diagnosed epilepsy? A qualitative

study of patients’ views. Seizure.

2003;12(2):69–73

37. Ridsdale L, Virdi C, Noble A, Morgan

M. Explanations given by people with

epilepsy for using emergency medical

services: a qualitative study. Epilepsy

Behav. 2012;25(4):529–533

38. Ryan S, Räisänen U. “The brain is

such a delicate thing”: an exploration

of fear and seizures among young

people with epilepsy. Chronic Illn.

2012;8(3):214–224

39. Sample PL, Ferguson PL, Wagner JL,

Elisabeth Pickelsimer E, Selassie AW.

Experiences of persons with epilepsy

and their families as they look for

medical and community care: a focus

group study from South Carolina.

Epilepsy Behav. 2006;9(4):649–662

40. Siqueira NF, Guerreiro MM, de Souza

EAP. Self-esteem, social support

perception and seizure controllability

perception in adolescents with

epilepsy. Arq Neuropsiquiatr.

2011;69(5):770–774

41. Swarztrauber K, Dewar S, Engel J Jr.

Patient attitudes about treatments for

intractable epilepsy. Epilepsy Behav.

2003;4(1):19–25

42. Thomas RH, Mullins JM, Hammond CL,

Smith PEM, Kerr MP. The importance

of the experiences of initial diagnosis

and treatment failure when switching

antiepileptic drugs. Epilepsy Behav.

2013;29(3):492–496

43. Varley J, Delanty N, Normand C,

Fitzsimons M. The health care

journeys experienced by people with

epilepsy in Ireland: what are the

implications for future service reform

and development? Epilepsy Behav.

2011;20(2):299–307

44. Viberg M, Blennow G, Polski B. Epilepsy

in adolescence: implications for the

development of personality. Epilepsia.

1987;28(5):542–546

45. Wilde M, Haslam C. Living with epilepsy:

a qualitative study investigating the

experiences of young people attending

outpatient clinics in Leicester. Seizure.

1996;5(1):63–72

46. Mbugua RN. Epilepsy disease,

disabilities in poor resource countries:

stigma and dilemmas. In: Proceedings

from the 30th International Epilepsy

Congress; June 23-27, 2013; Montreal,

Canada. Abstract P173

47. Varley JD, Delanty N, Normand C,

Fitzsimons M. The experiences of

the people with epilepsy as they

journey through the pathways of

epilepsy care in Ireland: a qualitative

phenomenological study. In:

Proceedings from the Annual Meeting

of the American Epilepsy Society;

December 4-8, 2009; Boston, MA.

Abstract 2.329

48. MacLeod JS. The Everyday

Lives of Adolescent Girls with

Epilepsy: A Qualitative Description

[doctoral thesis]. Indianapolis, IN:

School of Nursing, Indiana University;

2009

49. Devinsky O, Westbrook L, Cramer

J, Glassman M, Perrine K,

Camfi eld C. Risk factors for poor

health-related quality of life in

adolescents with epilepsy. Epilepsia.

1999;40(12):1715–1720

50. Edefonti V, Bravi F, Turner K, et al.

Health-related quality of life in adults

with epilepsy: the effect of age, age

at onset and duration of epilepsy in a

multicentre Italian study. BMC Neurol.

2011;11(1):33

51. Tong A, Flemming K, McInnes E, Oliver

S, Craig J. Enhancing transparency in

reporting the synthesis of qualitative

research: ENTREQ. BMC Med Res

Methodol. 2012;12(1):181

52. Tong A, Sainsbury P, Craig J.

Consolidated criteria for reporting

qualitative research (COREQ): a

32-item checklist for interviews and

focus groups. Int J Qual Health Care.

2007;19(6):349–357

53. Thomas J, Harden A. Methods for

the thematic synthesis of qualitative

research in systematic reviews. BMC

Med Res Methodol. 2008;8:45

54. Barnett-Page E, Thomas J. Methods for

the synthesis of qualitative research: a

critical review. BMC Med Res Methodol.

2009;9(1):59

55. Ring N, Ritchie K, Mandava L, Jepson

R. A guide to synthesizing qualitative

research for researchers undertaking

health technology assessments and

systematic reviews. Available at: http://

www. nhshealthquality. org/

56. Nguyen T, Stewart D, Hlyva O, et al An

interdependent dance in transition

to adulthood: perspectives of youth,

parents, and healthcare providers.

European Academy of Childhood

Disability (EACD) Conference October

2013 (Poster Presentation). Gateshead,

UK

57. Kyngäs H. Patient education:

perspective of adolescents with

a chronic disease. J Clin Nurs.

2003;12(5):744–751

58. Räty LKA, Larsson G, Starrin B, Larsson

BMW. Epilepsy patients’ conceptions of

epilepsy as a phenomenon. J Neurosci

Nurs. 2009;41(4):201–210

59. Räty LKA, Wilde-Larsson BM. Patients’

perceptions of living with epilepsy: a

phenomenographic study. J Clin Nurs.

2011;20(13-14):1993–2002

60. RamachandranNair R, Madhava AR,

Jack SM, Shapiro MJ. SUDEP: What do

patients want to know? In: Proceedings

for the Annual Meeting of the American

Epilepsy Society; December 5-9, 2014;

Seattle, WA. Abstract 2.065.

61. Tong A, Palmer S, Craig JC, Strippoli

GFM. A guide to reading and using

systematic reviews of qualitative

research. Nephrol Dial Transplant.

2016;31(6):897–903

62. Gabr WM, Shams MEE. Adherence

to medication among outpatient

adolescents with epilepsy. Saudi

Pharm J. 2015;23(1):33–40

63. Modi AC, Rausch JR, Glauser TA.

Patterns of nonadherence to

antiepileptic drug therapy in children

with newly diagnosed epilepsy. JAMA.

2011;305(16):1669–1676

64. Schoepfer AM, Straumann A, Panczak

R, et al. Development and validation

of a symptom-based activity index for

adults with eosinophilic esophagitis.

Gastroenterol. 2014;147(6):

1255–1266.e21

65. Louis EKS, Ficker DM, O’Brien TJ.

Epilepsy and the Interictal State:

17 by guest on May 23, 2020www.aappublications.org/newsDownloaded from

Page 18: Children’s Experiences of Epilepsy: A Systematic Review of ... · PEDIATRICS Volume 138 , number 3 , September 2016 :e 20160658 REVIEW ARTICLE Children’s Experiences of Epilepsy:

CHONG et al

Co-morbidities and Quality of Life. West

Sussex: Wiley; 2015

66. Bevan S, Zheltoukhova K, Summers

K, Bajorek Z, O’Dea L, Gulliford J.

Life and employment opportunities

of young people with chronic

conditions. Available at: http:// www.

theworkfoundation . com

67. Ronen GM, Streiner DL, Rosenbaum

P. Health-related quality of life in

childhood epilepsy: moving beyond

‘seizure control with minimal adverse

effects.’ Health Qual Life Outcomes.

2003;1:36

68. Aggarwal A, Datta V, Thakur LC. Quality

of life in children with epilepsy. Indian

Pediatr. 2011;48(11):893–896

69. Nadkarni J, Jain A, Dwivedi R. Quality

of life in children with epilepsy. Ann

Indian Acad Neurol. 2011;14(4):279–282

70. Jamieson N, Fitzgerald D, Singh-

Grewal D, Hanson CS, Craig JC,

Tong A. Children’s experiences of

cystic fi brosis: a systematic review

of qualitative studies. Pediatrics.

2014;133(6). Available at: www.

pediatrics. org/ cgi/ content/ full/ 133/ 6/

e1683

71. Tong A, Morton R, Howard K, Craig

JC. Adolescent experiences following

organ transplantation: a systematic

review of qualitative studies.

J Paediatr. 2009;155(4):542–549

72. Tong A, Wong G, Hodson E, Walker RG,

Tjaden L, Craig JC. Adolescent views on

transition in diabetes and nephrology.

Eur J Pediatr. 2013;172(3):293–304

73. Tong A, Wong G, McTaggart S, et al.

Quality of life of young adults and

adolescents with chronic kidney

disease. J Pediatr. 2013;163(4):1179–

1185.e5

74. Hannes K, Macaitis K. A move to

more systematic and transparent

approaches in qualitative evidence

synthesis: update on a review

of published papers. Qual Res.

2012;12(4):402–442

75. Prorok JC, Horgan S, Seitz DP. Health

care experiences of people with

dementia and their caregivers:

a meta-ethnographic analysis

of qualitative studies. CMAJ.

2013;185(14):E669–E680

76. Modi AC, Guilfoyle SM, Mann KA,

Rausch JR. A pilot randomized

controlled clinical trial to improve

antiepileptic drug adherence in young

children with epilepsy. Epilepsia.

2016;57(3):e69–e75

18 by guest on May 23, 2020www.aappublications.org/newsDownloaded from

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