Dealing with epilepsy: Parents speak upq
Keng Nei Wua,b, Eli Lieberb,c, Prabha Siddartha,b, Kimberley Smitha,b, Raman Sankard, Rochelle Caplana,b,*
aSemel Institute for Neuroscience and Human Behavior, University of California at Los Angeles, Los Angeles, CA, USA
bDepartment of Psychiatry and Biobehavioral Sciences, University of California at Los Angeles, Los Angeles, CA, USA
cCenter for Culture and Health, University of California at Los Angeles, Los Angeles, CA, USA
dDepartment of Pediatrics, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA
a r t i c l e i n f o
Received 8 January 2008
Revised 1 March 2008
Accepted 19 March 2008
Available online 25 April 2008
a b s t r a c t
In this study, focus groups were used to examine parents’ attitudes toward mental health services, use of
mental health and other services, as well as service-related and other challenges encountered by parents
of children with epilepsy. Both quantitative and qualitative analytic approaches were used to analyze the
transcripts of 36 parents grouped into six focus groups by socioeconomic status (SES) (high, low) and eth-
nicity (African-American, Caucasian, Hispanic). The quantitative analyses demonstrated that, irrespective
of SES and ethnicity, the parents were highly aware of their children’s behavioral, emotional, and cogni-
tive difficulties and the lack of knowledge about epilepsy among medical, educational, and mental health
professionals. The higher-SES parents were significantly more concerned about inadequate educational
services and the need for medical services, but less concerned about mental health and medical service
use than the lower-SES parents. Insufficient knowledge about epilepsy and about services, parent emo-
tional difficulties, and use of educational services differed significantly by ethnicity. The qualitative anal-
yses highlighted the parents’ concerns regarding misconceptions about epilepsy and the stigma toward
mental health care among the African-American and Hispanic parents. These findings suggest the need
for accessible and better-quality mental health, educational, and medical services for children with epi-
lepsy irrespective of SES and ethnicity. They also underscore the importance of educating parents, service
providers, and the general public about epilepsy.
? 2008 Elsevier Inc. All rights reserved.
Despite higher rates of psychopathology [1–10] and cognitive
difficulties [2,7,11–13], few children with epilepsy receive mental
health services . A recent review of the psychosocial impact of
epilepsy concluded that both families and parents of children with
epilepsy would benefit from mental health services .
To better understand factors involved in the unmet mental
health needs of children and families with epilepsy, we used focus
groups to examine parents’ perceptions of the need, use, and bar-
riers to mental health care compared with the medical and educa-
tional services they receive for their children. ‘‘A focus group is
defined as a carefully planned discussion designed to obtain per-
ceptions on a defined area of interest in a permissive, non-threat-
ening environment” . It narrows the gap between professionals
and their clients and is ‘‘a powerful means of exposing profession-
als to the reality” of patients’ attitudes toward them and the ser-
vices they provide . Moreover, focus groups allow group
members to safely express their perspectives with others who
share their experiences .
With respect to predictors of unmet mental health needs in
children with epilepsy, Ott et al.  found that lower parental edu-
cation was associated with the absence of mental health care in
children with complex partial seizures and primary generalized
seizures with absence. Williams et al.  reported that risk fac-
tors for anxiety in children with epilepsy included being Caucasian
rather than African-American. In addition to child behavior prob-
lems, low income and unsatisfactory family relationships contrib-
uted to the high rate of depression in mothers of children with
epilepsy . This study, therefore, explored how parents’ percep-
tions of the mental health needs of their children with epilepsy
vary by socioeconomic status (SES) (e.g., high and low) and ethnic-
ity (e.g., Caucasian, Hispanic, African-American).
Stigma is associated with mental illness and mental health care
dens of mental health” . They therefore avoid seeking mental
health services [18,20]. Supporting this notion, African-Americans
1525-5050/$ - see front matter ? 2008 Elsevier Inc. All rights reserved.
qFunding supported by Epilepsy Foundation of America: Shire Targeted Award.
* Corresponding author. Semel Institute for Neuroscience and Human Behavior,
Room 48-263, 760 Westwood Plaza, Los Angeles, CA 90095-1759, USA. Fax: +1 310
E-mail address: email@example.com (R. Caplan).
Epilepsy & Behavior 13 (2008) 131–138
Contents lists available at ScienceDirect
Epilepsy & Behavior
journal homepage: www.elsevier.com/locate/yebeh
and Hispanics are less likely to use mental health services than Cau-
casians . In addition to minorities, disadvantaged people with
less education and income are more concerned about negative fam-
ily reactions to mental health services .
the study described in this article predicted that high-SES-group
parents would use more mental health, medical, and educational
port fewer academic, behavioral, and emotional difficulties with
ward these services, and report fewer academic, behavioral, and
emotional difficulties than Caucasian parents. To provide a more
in-depth understanding of how parents perceive mental health
and other services needed for the care of children with epilepsy,
approach to analysis of focus group speech samples.
This study included six parent focus groups stratified by SES (high, low) and
ethnicity (African-American, Caucasian, Hispanic). We determined SES using the
Hollingshead 2 factor index  which is based on parental occupational and edu-
cational status. We recruited 36 parents of children with epilepsy irrespective of the
type of epilepsy and its severity, as well as comorbid mental retardation, from the
UCLA Outpatient Pediatric Neurology Clinic waiting room using UCLA institutional
review board-approved flyers. We did not obtain information on illness variables
and the presence/absence of comorbid developmental disabilities in the children.
As parents were free to pick up and respond to flyers displayed in the clinic waiting
room, data on parents who refused to participate are unavailable. Because of the
lower participation rate of high-SES Hispanic parents, we conducted two low-SES
Hispanic parent focus groups instead of one high-SES and one low-SES Hispanic fo-
cus group. Therefore, we did not include the Hispanic parent focus groups in the be-
tween-group SES analyses.
Three trained members of our research team, an African-American, a Caucasian,
and a Hispanic group leader, each conducted two 60-minute parent focus groups
(high- and low-SES groups for African-American and Caucasian parents, two low-
SES Hispanic groups). During the first 10 minutes of each focus group, the group
leaders introduced themselves, set the ground rules for the discussion, and had par-
ents introduce themselves and briefly tell the group about their children with epi-
lepsy. They then encouraged discussion on the following topics using the
predetermined questions listed in Table 1: parents’ knowledge about and experi-
ence with mental health, medical, and educational services for their children with
epilepsy; parents’ perceptions of their children’s behavioral and emotional difficul-
ties, whether these should be dealt with through mental health services, and how
medical, educational, and mental health professionals, as well as people in general,
viewed both pediatric epilepsy and mental illness. Although group leaders were in-
structed on how much time to spend on each topic (see Table 1), the group dynam-
ics and the group leader determined the extent of discussion and amount of time
spent on each question.
A facilitator audiotaped and later transcribed the conversation that took place in
each focus group. Two trained raters first divided these transcripts into blocks of
text based on topic change and speech turns. Within each text block, they coded
for the presence or absence of the following main themes and their subcategories
(Fig. 1): use of and need for mental health services, medical services, and educa-
tional services; positive, negative, and neutral attitudes toward each of the services;
behavioral, emotional, and academic difficulties in the child and emotional difficul-
ties in the parent; possible barriers to care in terms of knowledge about epilepsy or
services for these children. The two raters separately coded 15% of the transcripts,
and intraclass correlations indicated an interrater reliability between 0.88 and 0.99
for each theme. Each rater then proceeded to code half the remaining text blocks for
all the themes.
2.3. Quantitative and qualitative data analysis
As illustrated in Fig. 1, we coded two levels of themes: main themes and subcat-
egories. We compared the proportion of blocks of text coded for each theme subcat-
egory (Fig. 1) across focus groups separately by SES and ethnicity. For each focus
group, the raters coded the transcript for the presence or absence of each subcate-
gory in every text block and summed up the number of blocks in which the theme
subcategory was present. Thus, for example, for the African-American groups
(Fig. 1), under the main theme of Medical Use of Services, the subcategory Use
was coded in 65 blocks, the subcategory Need in 8 blocks, and Other (i.e., services
not wanted, discontinued, or specified) in 31 blocks. To calculate the proportion for
each subcategory, we divided the frequency of blocks coded for each subcategory by
the total number of blocks coded for the main theme. So, for the preceding example,
for ‘‘Use” of Medical Services, we obtained 65/(65 + 8 + 31) = 62.5% for the African-
American groups. We then compared the variables generated for each subcategory
separately by ethnicity and SES. For all quantitative analyses, exact v2tests were
conducted using StatXact. Significance was set at 0.05.
We searched excerpts of the coded themes for trends and relationships between
SES and ethnicity groups using EthnoNotes , which efficiently and reliably man-
ages, analyzes, and interprets data generated in qualitative and integrated qualita-
tive and quantitative methods research .
3.1. Quantitative results
3.1.1. Focus group differences by SES
v2analyses indicated that the high-SES parents mentioned
mental health, medical, and educational service use, as well as
child and parent emotional difficulties, significantly less often than
low-SES parents (Table 2). They discussed the need for medical ser-
vices and expressed a negative attitude toward educational ser-
vices significantlymore often
However, we found no significant differences by SES in the attitude
toward medical and mental health services, as well as in barriers.
3.1.2. Focus group differences by ethnicity
emotional difficulties, and use of educational services differed sig-
nificantly by ethnicity. Post hoc tests of v2analyses showed that
the African-American parents reported insufficient knowledge
about epilepsy (v2(1) = 15.50, P < 0. 001), parent emotional difficul-
ties(v2(1) = 10.58,
P = 0.001),
(v2(1) = 5.645, P = 0.02) and educational (v2(1) = 5.46, P = 0. 03) ser-
vices, significantly more often than Caucasian parents (Table 2). In
contrast, Caucasian parents reported inadequate knowledge about
services (v2(1) = 12.07, P < 0.001) significantly more often than Afri-
can-American parents. Hispanic parents mentioned use of educa-
tional services(v2(1) = 5.67,
P = 0.02)
difficulties (v2(1) = 5.71, P = .02) significantly more often than the
Additionally, there was a trend toward significant differences by
ethnicity in the use of medical services (African-American > Cauca-
sian) and child academic difficulties (Hispanic > Caucasian). Use of
mental health services, attitude toward these services, and barri-
ers, however, did not vary significantly by ethnicity.
3.2. Qualitative results
3.2.1. Mental health services and emotional difficulties
The African-American and high-SES parents were concerned
about the cost and availability of mental health care through their
insurance (Table 3, quotes 1 and 2). Some African-American parents
epilepsy might need mental health care and avoided such services
feltthat mentalhealth services were importantand helpful for their
children and for the whole family (Table 3, quotes 5–7).
Parents in all the focus groups were very aware of depression in
their children (Table 3, quotes 8–10), and one African-American
parent reported past suicidal ideation in his child (Table 3, quote
8). Hispanic and Caucasian parents also felt that their children’s
K.N. Wu et al./Epilepsy & Behavior 13 (2008) 131–138
self-esteem suffered as a result of their illness (Table 3, quotes 13
and 14). Moreover, Caucasian parents reported that their children
felt or feared rejection from peers and also wanted to hide their ill-
ness and avoid illness-related attention (Table 3, quotes 15 and
Furthermore, parents from all the groups emphasized the
interaction between their own emotions and those of their chil-
dren (Table 3, quotes 17–19). They pointed out that they, the
parents, often expressed frustration, depression, and worries,
and that these emotions affected their children negatively. Both
African-American and Hispanic parents felt guilty or blamed
themselves for their children’s illness and problems (Table 3,
quotes 20 and 21).
3.2.2. Seizures, AEDs, and behavioral difficulties
their children’s behavior problems (Table 3, quotes 22–26). In partic-
viders were ignorant about epilepsy and viewed seizures as
behavioral problems (Table 3, quotes 27 and 28).
3.2.3. Medical services
High-SES parents voiced financial challenges due to inadequate
insurance coverage whereas low-SES parents rarely mentioned
these difficulties. On the other hand, Hispanic participants also fre-
quently stated that they did not meet qualifications for govern-
ment-provided medical services for their children (Table 3,
quotes 29 and 30). In terms of parents’ attitudes toward medical
services, African-American parents trusted their medical service
providers and thought they were ‘‘in good hands.” One African-
American couple even referred to their son’s doctor as ‘‘the al-
mighty something.” On the other hand, Hispanic and Caucasian
parents (of both high and low SES) expressed doubt in their med-
ical service providers and thought that ‘‘the doctors know very
little” and, sometimes, ‘‘parents teach the neurologists” (Table 3,
3.2.4. Educational services and academic difficulties
In excerpts coded for negative attitude toward educational ser-
vices, both high- and low-SES parents felt educators were ignorant
about epilepsy and how to deal with students with this illness (Ta-
ble 3, quotes 34 and 35). In addition, both high- and low-SES par-
ents repeatedly mentioned that their children lagged behind in
school as a result of cognitive difficulties (Table 3, quotes 36 and
37). High-SES parents also discussed how they needed to be asser-
tive and ‘‘literally force the school” to provide educational services
for their children (Table 3, quote 38).
Qualitative analyses of the transcripts also revealed several
culturally specific examples of stigma. For instance, some
Hispanic parents mentioned that their family members did not
understand epilepsy and felt it was punishment for sins. ‘‘You
know, my mom’s family, they tell me ‘well what did you do
wrong, you know? What sin did you do that God gave your child
As mentioned earlier (Table 3, quote 4), the African-American
parents (of both high and low SES) mentioned that they were
raised to seek ‘‘Aunt Sally” or ‘‘the Pastor” rather than a mental
health professional for help. Moreover, several African-American
parents mentioned that in their culture, seizures, referred to as
spells, were not regarded as a medical condition. ‘‘In African-Amer-
ican communities and churches, they (seizures) are called spells.
Topics discussed in each focus group
I. Introductory questions (5 minutes)
1. What types of services are available for children with epilepsy? (Parents need to define services) [Probe: I didn’t hear anyone mention anything about mental health....
What about mental health?]
2. Who do you know that has used some of these services?
3. In what ways are these services helpful or not?
II. Transition questions (5 minutes)
4. What’s the best way to get help for children with epilepsy?
5. What do you think a parent of a child with epilepsy should do to get help for their child?
III. Key questions (30 minutes)
A. Behavior/academic challenges
6. What challenges do children with epilepsy have that children without epilepsy do not have?
7. Please tell me what kinds of difficulties with behavior children with epilepsy are more likely to have.
8. Does epilepsy affect how children do in school? In what ways?
9. What other challenges do you think children with epilepsy have?
10. Where should parents take their children to get help for the difficulties we discussed earlier? Who do you know that has tried to get help with these difficulties for their
child with epilepsy?
11. What services worked for them? What did not?
12. How do you feel/what do you think about a child with epilepsy seeing a counselor (including a psychologist, psychiatrist, social worker, religious person, marriage and
family therapist, or educational therapist)?
C. Culture/misconceptions and stigma
13. How knowledgeable do you think people are about epilepsy? Are they as knowledgeable as they should be?
14. How do you think people, in general, feel about children with epilepsy?
15. How do people, in general, treat children with epilepsy? How does this compare with how people generally treat other children?
IV. Ending questions (10 minutes)
16. What other issues do parents of children with epilepsy have that we haven’t talked about?
K.N. Wu et al./Epilepsy & Behavior 13 (2008) 131–138
As a child I had a cousin who had epilepsy. Nobody ever used the
term epilepsy. That was what that was called. So we knew about it,
we just didn’t know the medical term for it and what we did about
it was nothing. ‘‘Oh, yeah, don’t worry about her Mrs. So and So,
‘cause that spell will be over in just a few minutes.’ She was never
4.1. Mental health service and emotional difficulties
Consistent with previous studies [1,2,4,7–10], our quantitative
and qualitative analyses demonstrated that all six parent focus
Main Theme Subcategory**
Access to Services (25%)
Use of Medical Services
FOCUS GROUP TRANSCRIPTS
Use of Educational Services
Use of Mental Health Services
Mental Health Services
Emotional (Child or Parent) (77%)
Knowledge about Services or Epilepsy (75%)
Fig. 1. Focus group themes.*Other: services discontinued, unwanted, or unspecified.**For illustrative purposes, subcategory proportions of the African-American focus
groups are included in parentheses.
Focus group theme subcategory differences by SES and ethnicitya
Socioeconomic statusTheme subcategoryEthnicity
High SES Low SES
Mental Health Service Use
Medical Service Use
Educational Service Use
Negative Attitude to Educational Services
Medical Service Need
Child Behavioral Difficulties
Parent Emotional Difficulties
Epilepsy Knowledge Barrier
Service Knowledge Barrier
Parent Emotional Difficulties
Educational Service Use
Medical Service Use
Child Academic Difficulties
aThis table includes only the theme subcategories that were significantly different across SES or ethnicity. AA, African-American; C, Caucasian; H, Hispanic.
K.N. Wu et al./Epilepsy & Behavior 13 (2008) 131–138
Selected quotes from focus group transcripts
Theme Focus GroupQuote
Mental Health Service
1 High SES Once you get psychiatric disorder, and then you go see a mental health professional, anything under the umbrella of neuro-
psychiatry in my insurance, I went from one hundred percent to seventy percent (insurance coverage). ... Before my daughter
came to (provider) they wanted fourteen thousand dollars prepayment upon admission.
Yeah, I’ve actually had to seek out mental health for my daughter, which has been difficult especially in an HMO system to even
get that acknowledged.
3 African-American When you indicate mental health and when I read it, I’m going to tell you, I’m going to be honest, I was disturbed. I was like
ready to walk out. To get up and leave, like this is not where I’m supposed to be. Why am I here? Why are you focusing? Why
am I seeing in black-and-white ‘‘mental health?” How does this all play into what I’m getting ready to go through? Why is this
spelled out ‘‘mental health?” Is it something else now that I have to think about as what we’re getting ready to go through with
our child? How does mental health come into epilepsy?
I think we as African-American aren’t taught that you need other help, outside help, to go to a psychiatrist because you think
maybe we’re a little bit crazy. I have not found that most of the people in the community were not taught to do that. We were
not raised that way. If something’s wrong well talk to your Aunt Sally, or go talk to the pastor.
Need for Mental Health Care
5 CaucasianWe were interested in finding our son a therapist because all these fear issues ... you talk about a lack of control in your life but
never know when lightning will strike so we tried to find a therapist.
So there’s a lot that is coming in front of him, so mental health I really need to be there for him.
Parents will go into depression. And once they’re depressed they can’t help their children.... And you know if you can’t motivate
the parents help their kids so the whole family needs treatment and the siblings. And you know so it’s the ripple effect that the
child may be the one affected but boy the whole family suffers. So I think that family mental health needs to be addressed.
Child Emotional Difficulties
He was really feeling down, ‘‘something’s wrong with me, am I going to make it?” That was a difficult time.
When she is in a depressed mood ... and that’s touchy you know. And it’s almost like walking on a mine field.
I had to seek out mental health services for my daughter because depression was setting in and then she started talking. I know
every teen goes through ‘‘I wanna die,” but hers was becoming I thought more that she meant it.
Depression comes in. Frequent depression is so common in epilepsy that I think it has to be a very important component.
I can see her depressed, there’s times where I can see her and she’s like ‘‘what happened” she started crying.
Self-esteem is a problem too because they really see that they are about two steps behind anyone, usually because of the
medication. And that’s tough for kids; it’s tough not to get it, not to be as quick as the other kids. So they become isolated.
My daughter’s self esteem was not good anymore, it’s like you can take only so much rejection. She didn’t get anything ... she
just wanted a friend ... or someone or just sit next to a table where someone would talk to you.
The thing is when the kids are older they don’t identify. They’re in complete denial. They live their whole life without a problem.
And hers are always ‘‘I wish they were absence.” They’re not absence. And loses consciousness and it’s obvious to everybody.
She doesn’t want to be a whole seminar. She doesn’t want to be probably different. Right, she doesn’t want to be the center of
attention because she had a seizure. So she doesn’t want to feel like she’s a subject of a teacher discussing her.
Parent Emotional Difficulties
17Low SESThe kids are smart, and they pick off of everything that we feel ... he sees or feels that you are unsure and you know you’re sad
about it then he pick up on. Then he’ll really start to feel like something’s wrong.
There’s thing going on their little minds about why is mom so worried, why are they worried about money, I’m causing so many
problems, everyone’s stressed out. And depression you know comes in.
He knows my tone of voice when it fluctuates and I’ll get mad like ‘‘why can’t you just sit up? You know it’ll be so much easier if
you could just sit up and just not fall when you have a seizure, why?” And he looked at me and he would start to cry, ‘‘I’m sorry
daddy.” ‘‘I’m sorry (child’s name) I was just so frustrated.”
The onset of my child’s epilepsy was from cysticercosis, which is a parasitic infection. So I have to go through the guilt because
somehow I allowed this parasite to attack my child. I was obsessed with when my child hits sixteen she is going to be looking at
me and saying, ‘‘why didn’t you or dad do something to fix this?” Because if she is actively having seizures at 16, there is no
It (child’s behavior problems) made me feel like I didn’t want to try. Guilty, they made you feel guilty.... They made me feel like
I did something. And I just felt speechless. I felt intimidated.
Seizures, AEDs, and Behavioral Difficulties
22 Low SESThe clinginess and just the side effects or the withdrawal from the medication when she’s been on something in the hospital for
two or three days, which is normal ... from what they call postictal stage and what’s attributed to the drugs, what may go away
when the drugs are out of her system.
There’s a lot of behavior because we’ve been on the medical merry-go-round that causes social problems because of the meds. It
didn’t control the epilepsy, didn’t control the seizures, but just made her horrible ... irritable, hyper, up all night.
Epilepsy has a lot of do with behavior because we find more of his behavior a little, how can I say, I wouldn’t exactly say
abnormal but different.
It is involuntary our kids aren’t doing it. It’s the brain. So if we just let them know that, no the kids aren’t being obstinate, no
they don’t have behavioral problems, it’s probably the medication and the seizure.
He’s not being a brat, or he’s not just running around the classroom and not paying attention to you. There’s side effects of
medications you know and these are the side effects and these are the things that you can help him with.
The paramedics came. They just kept saying ”Well, she’s nonresponsive to our commands.‘‘ OK, I understand that’s EMT lingo.
But then he kept saying, ”Well, did you all discipline her? Was there a problem?’ And I’m saying, ‘No, she has epilepsy. She had a
seizure.‘‘ The paramedic was like totally couldn’t grasp what we were telling him and he had concluded that we must have
disciplined her and that’s why she was stubborn.
It was an orientation type of meeting and we walked in and they (mental health service provider) just told me that she has a
behavioral problem and I said no. I said there’s something and because of this I felt she needs help. And they just said no she had
a behavioral problem. But they didn’t even go into record or look or dig or even try. And it made me feel like ‘‘oh, I’m not going to
try” you know. I go out; they told me this, imagine anywhere else I go.
29 High SES As parents and trying to find services for our children ... we don’t get it covered through our insurance so my child just won’t
get those services.
(continued on next page)
K.N. Wu et al./Epilepsy & Behavior 13 (2008) 131–138
groups noted emotional difficulties in their children with epilepsy.
ontheirchildren’semotionaldifficulties.Shoreetal. have dem-
by the severity of their epilepsy. The concurrence of higher levels of
child behavior problems and parent emotional problems despite
more mental health use in the low-SES parents implies a need for
better-quality mental health services for low-SES parents.
We were surprised to find that the high-SES parents reported
significantly less use of mental health services than the low-SES
parents. This finding is likely due to the lack of insurance coverage
for mental health services voiced by the high-SES parents. It stres-
ses the importance of providing accessible mental health care to
children with epilepsy and their families irrespective of SES. As
suggested by the qualitative analysis, this finding might also repre-
sent the parents’ lack of knowledge about the impact of epilepsy on
children’s behavior and emotions and the associated need for men-
tal health services. Alternatively, the African-American and low-
SES parents might have been in the earlier, more difficult stages
of coping with their child’s illness than the higher-SES parents.
According to Austin , parents who adapt well to their children’s
seizure condition are less emotionally challenged.
Moreover, African-American parents’ concerns about the stigma
of mental health were consistent with the notion of a ‘‘double
stigma” . Facing the double stigma of mental illness and minor-
ity status, minority groups are more likely to avoid mental health
services [18,20]. In fact, the African-American parents’ reticence to-
ward mental health care might have contributed to their increased
reporting of emotional difficulties compared with the Caucasian
parents. Furthermore, as suggested by the negative response of
one of the African-American parents when mental health issues
were discussed during the focus group (Table 3, quote 3), the term
triple stigma might be more appropriate.
Although preliminary, these findings suggest that measures
‘‘double stigma” among the Hispanic parents, the study’s findings
highlight the importance of further studies of the difference in atti-
health care between African-American and Hispanic parents.
4.2. Medical Services
The study’s medical service findings suggest an increased need
for these services irrespective of SES and ethnicity. Contrary to our
expectations, the high-SES parents described less use of medical
services than the low-SES parents. Similar to our findings on men-
tal health services, high-SES rather than low-SES parents were con-
cerned about financial difficulties and inadequate insurance
coverage for their children’s medical care based on our qualitative
analysis. It is possible that the low-SES parents in our sample
might have qualified for government-funded services such as pub-
lic insurance programs which help poor and low-income children
gain access to medical services [27–31].
Consistent with evidence that delayed and unmet health care
needs are associated with decreased trust in physicians , Afri-
can-American parents had a more trusting relationship with their
medical service providers and also used more medical services
than Caucasian parents. These ethnic differences in medical service
access may indicate a need for increased medical services for Cau-
casian parents of children with epilepsy.
4.3. Educational services
The study’s findings also underscore the need for accessible
educational services for both low- and high-SES children with epi-
lepsy. Thus, although both high- and low-SES parents reported cog-
nitive difficulties in their children, high-SES parents reported less
use of educational services than low-SES parents. Moreover,
high-SES parents voiced the need to assertively demand educa-
tional services for their children and were more critical of educa-
tional services than low-SES parents. The report of increased
academic difficulties among the Hispanic children together with
more use of educational services by their parents, most of whom
were of low SES, also points to the need for better-quality educa-
tional services for these children. Supporting this finding, we pre-
viously demonstrated minority status as a predictor of cognitive
and linguistic deficits in children with complex partial seizures .
4.4. Insufficient knowledge and misconceptions
Our findings underscore the need to provide more information
about epilepsy to African-American parents of children with this
illness. For African-American parents, the relationship of complete
Table 3 (continued)
Theme Focus GroupQuote
30 Hispanic I can’t even get her to see her neurologist because she has no MediCal. She used to have MediCal, I don’t know why she was
You’re taking this doctor’s advice that you know, they’re the almighty something for your child at this time
I learned a painful way and quite appalled at how poorly prepared pediatricians are for kids with special needs. And I’ve learned
also is that there are a lot of pediatricians who don’t even know what seizures are.
At the beginning, you know what the doctor had to give me? A pass to the medical library. She told me I’m sorry I don’t know
what your daughter has, here’s a pass, you’re welcome to go ... so they don’t know here and the result is that we the parents
teach the neurologists.
Educational Services and Academic Difficulties
34Low SESWhen you describe you know any other seizures beside a grand mal they have no clue what you’re talking about. So I think the
school districts again they don’t know.
There are several different types of epilepsy and you can see it and they’re all different. And when you go to the teacher and say
this is the type of epilepsy, they think oh you’re crazy because ... as a whole we need to educate all the professionals that deal
with our child and work as a team.
So she tested GATE, the high end, which was good but they couldn’t understand then why her comprehension was so bad. AND
what it is I think, is the memory thing. Like if you tell her a story, she may not be able to articulate it back to you in an accurate
sequence or in a way that makes sense.
He’s failing. He’s failing big time.... He can’t focus.... He has like one little paragraph here you know and it will take him three
hours to get this paragraph down to here.... Rewriting it, just because he couldn’t focus.... We’re just trying to get him to write
two sentences of that, and that’s still about an hour, just to write two sentences of that across there.
You fight with that (school aide) with the school district. You’re more likely to get it (school aide) but it requires lots of letters
and it requires lots.... You don’t just get it the first time around. You gotta say no three times before somebody will listen to you.
35 High SES
36 High SES
37 Low SES
K.N. Wu et al./Epilepsy & Behavior 13 (2008) 131–138
trust in and dependence on their children’s physicians suggests
that in contrast to Caucasian parents, they felt they had insufficient
knowledge about epilepsy and relied heavily on their physicians
for this knowledge. As found in children with epilepsy and other
chronic medical illnesses, acquiring knowledge of the child’s med-
ical condition, an early step in the coping process, leads to a thor-
ough understanding of the child’s condition and improves parents’
ability to cope with the illness [33–36]. Information on the mean
duration of epilepsy in the African-American and Caucasian chil-
dren is necessary to determine if our finding reflected different
phases in the coping process in these two parent groups. The Cau-
casian parents’ reports of insufficient knowledge regarding services
for their children with epilepsy implies that these parents might
have been further in the coping process and had knowledge about
the illness but not about related services.
In terms of misconceptions, a recent study found that U.S. Span-
ish-speaking adults were significantly more unfamiliar with epi-
lepsy and had more misconceptions about the illness than non-
Hispanic adults . One-third of the Hispanic subjects in that
study believed that people with epilepsywere dangerous,and some
believed that seizures, caused by sin, could be remedied by exor-
cism . Similarly,the African-Americanand Hispanicfocusgroup
parents reported misconceptions about epilepsy by family mem-
bers and members of the ethnic community. Their burden was fur-
ther increased given their concern that there is a lack of knowledge
about epilepsy among service providers, paramedics, and teachers,
as well as mental health professionals. Previous studies have re-
ported that both teachers [38,39] and physicians [40–44] are unfa-
miliar with and have limited knowledge about epilepsy.
To help parents cope with stress arising from misconceptions in
their communities and among service providers, it is necessary to
educate African-American and Hispanic communities about epi-
lepsy and the need for mental health services. Education about epi-
lepsy will also better prepare front-line medical, educational and
mental health service providers to provide appropriate services
and support for parents of children with epilepsy.
The study’s findings represent parental perceptions and not
empirical measures of service use, attitudes, and barriers. As such,
they reflect the personal views of the parents participating in the
focus groups. Moreover, although the group leaders tried to consis-
tently follow the predetermined time line in Table 1, group dynam-
ics affected the extent of discussion and time spent on each
question. Variation in these two variables is an inherent problem
of the quantitative statistics of focus groups.
We analyzed stigma qualitatively but not quantitatively be-
cause the low base rate with which the focus group parents made
references to stigma (0 to 3 times during the entire focus group)
precluded statistical analysis. The low base rate of stigma might
have been a function of the fact that the group leaders introduced
this topic toward the end of the focus groups so that there might
have been less time to talk about stigma.
Our SES findings were limited by the absence of a high-SES His-
panic focus group and the small number of focus groups. In addi-
tion, we had no access to data on parents who decided not to
participate in our study because we recruited subjects using flyers
distributed by the pediatric neurologists in the UCLA Pediatric
Neurology Outpatient Clinics. Furthermore, we had minimal demo-
graphic data and seizure-related information on the study partici-
pants. Thus, we do not know if parents whose children have had or
currently have mental health problems, learning problems, or
uncontrolled seizures were more or less motivated to participate
in the study compared with other parents. Moreover, the inclusion
of parents of children with intellectual disabilities in our study
could have differentially affected parents’ attitudes toward and
perceptions of services, as well as their knowledge about epilepsy
and related challenges. However, in the absence of relevant demo-
graphic information, we were unable to investigate this question.
of children with epilepsy, irrespective of ethnicity and SES, were
highly aware of their children’s comorbid emotional and behavioral
sitive mental health services. The findings also emphasize the con-
cerns the parents had about the quality of the mental health,
medical, and educational services their children receive. They also
point to the need to educate Caucasian parents about available ser-
of mental health care. The study’s findings highlight the importance
of providing knowledge about epilepsy to medical, educational, and
mental health professionals, as well as to the African-American and
This study was supported by the Shire Targeted Grants
NS32070 (R.C.). We appreciate the assistance of Marion Belinda
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