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Epilepsy Research (2011) 95, 213—220

journal homepage: www.elsevier.com/locate/epilepsyres

Maternal reactions to a child with epilepsy:


Depression, anxiety, parental attitudes and family
functions
Aynur Pekcanlar Akay a,∗, Semra Hiz Kurul b, Handan Ozek a,
Sevay Cengizhan a, Neslihan Emiroglu a, Hulya Ellidokuz c

a
Department of Child and Adolescent Psychiatry, Dokuz Eylul University School of Medicine, 35340 Inciralti, Izmir, Turkey
b
Department of Pediatrics, Division of Pediatric Neurology, Dokuz Eylul University School of Medicine, Izmir, Turkey
c
Department of Preventive Oncology, Dokuz Eylul University School of Medicine, Izmir, Turkey

Received 6 December 2010; received in revised form 17 March 2011; accepted 25 March 2011
Available online 2 May 2011

KEYWORDS Summary
Epilepsy; Objective: The goal of this study was to investigate how the disease and treatment of epilepsy
Depression; affected the psychological profile (depression and anxiety) of mothers whose children had
Anxiety; epilepsy, as well as these mothers’ attitudes towards their children and their family relation-
Parental attitude; ships.
Family functioning Methods: Both the case and control groups consisted of 50 children and their mothers. All
mothers were asked to complete the Beck Depression Inventory, State-Trait Anxiety Inventory,
Parental Attitude Research Instrument and Family Assessment Device.
Results: Mothers whose children had epilepsy scored significantly higher in depression and state
anxiety compared to the mothers of the control group. The mothers of children diagnosed with
epilepsy also failed to develop supportive and friendly relationships with their children. In
addition, these mothers scored significantly higher in the Attitude of Hostility and Rejection,
Marital Discordance and Authoritarian Attitude as compared to the mothers of the control group.
Conclusion: This cross-sectional study demonstrated that, for the mothers of children who had
epilepsy, the illness might have an adverse effect on their lives and their family relationships.
© 2011 Elsevier B.V. All rights reserved.


Corresponding author. Tel.: +90 2324123559; fax: +90 232776686; cellular: +90 5324683399.
E-mail addresses: aynur.akay@deu.edu.tr, pekcanlara@yahoo.com (A. Pekcanlar Akay), semra.kurul@deu.edu.tr (S. Hiz Kurul),
handan.ozek@deu.edu.tr (H. Ozek), sevay.alsen@deu.edu.tr (S. Cengizhan), neslihan.emiroglu@deu.edu.tr (N. Emiroglu),
hulya.ellidokuz@deu.edu.tr (H. Ellidokuz).

0920-1211/$ — see front matter © 2011 Elsevier B.V. All rights reserved.
doi:10.1016/j.eplepsyres.2011.03.020
214 A. Pekcanlar Akay et al.

Introduction The aim of this study was to investigate how epilepsy


affected the psychological profile (depression and anxiety)
Epilepsy is a chronic illness that often affects the cognitive of mothers whose children had epilepsy, their attitudes
and behavioral functions of diagnosed children. The impact towards their children and their family relationships. This
of epilepsy is not limited to the child experiencing seizures; study also investigated the impact of seizure related factors
it affects all members of the family to a certain degree. The (type of seizures, intractability of seizures, and frequency
unpredictable nature of the onset of seizures, the failure of seizures), duration of illness and comorbidity of mental
in academic success as well as the social stigmatization of retardation on these parameters.
children may create many problems in the family. With the
increased responsibilities of the parents, family activities Subjects, materials and methods
become restricted (Mu, 2005). Several studies showed signif-
icant amount of stress in families of children diagnosed with This study was planned and conducted in The Department of Child
epilepsy (Shore et al., 1998; Cushner-Weinstein et al., 2003). and Adolescent Psychiatry and The Department of Pediatric Neu-
Rodenburg et al. (2005) reviewed the literature about family rology, Dokuz Eylul University School of Medicine Hospital in 2010.
factors and psychopathology in children with epilepsy. They The study involved a series of 50 children with epilepsy and their
showed that compared with the control group, families of mothers. 60 children with epilepsy were selected from the Child
children with epilepsy generally fared worse on the whole Neurology Department; 9 children and their mothers from the case
range of family factors, indicating a lower parent—child group declined to participate while 50 of them agreed to join the
study. One mother from the case group did not fill the scales prop-
relationship quality, more depression in mothers, and prob-
erly. The control group consisted of 50 healthy children and their
lems with family functioning. When the effect of epilepsy mothers. A total of 60 controls were defined; 6 of them declined
on families was compared to the effect of other chronic ill- to participate in the study while 4 of them did not complete the
nesses on families, the parents of children diagnosed with necessary scales properly and did not return the necessary forms so
epilepsy were shown to be much more affected than in the they were excluded. The entire group in the study, ranged between
other illnesses (Chiou and Hesieh, 2008). It has been shown the ages of 2—17 years. The control group had similar sociodemo-
that mothers are the primary caregivers and are generally graphic features (age, gender, education of children and the ages of
more affected by their children’s chronic illnesses since as parents, family income, the education and professions of mothers,
a rule; it is the mother who protects and provides care for number of siblings) to the epilepsy group. The control group was
the child’s well being and health (Kovacs et al., 1985). Ferro recruited from a local school in the epidemiologic catchment area
of Dokuz Eylul University Hospital. All mothers gave informed con-
and Speechley (2009) reviewed that between 12% and 49%
sent for their children to participate in the study and the children
of mothers caring for children with epilepsy either met or gave assent. The study was approved by the Institutional Ethical
scored above the clinical cut offs for depression based on Committee. Mothers of children with epilepsy and those of the con-
the self-report screening measure. In a study by Iseri et al. trols were excluded if they had any known chronic disease or any
(2006), the rates of posttraumatic stress disorder and major known or diagnosed psychiatric disorder.
depressive disorder in the parents of children with epilepsy
were found to be statistically high. In contrast, Baki et al. Scales used in the study and their evaluation
(2004) observed that the difference in proportion of moth-
ers was not significantly different between Turkish mothers Both children and mothers were interviewed by an experienced
of children with epilepsy when compared to the mothers psychiatrist. The sociodemographic data, medical history, family
of children without epilepsy. The depressive symptomatol- history of children and mothers were recorded on a sociode-
ogy or psychopathology in mothers negatively impacts child mographic data form. This form consisted of sociodemographic
outcomes, including child adjustment, quality of life and information including educational, occupational, marital and eco-
behavior (Adewuya, 2006). As for children with less con- nomic status of mothers as well as information on the known chronic
illnesses and known psychiatric disorders.
trollable seizures, the comorbidity of mental retardation
All epilepsy groups consecutively recruited at the time of their
and learning disorders affected the mothers more negatively
child’s visit to the outpatient Pediatric Neurology Clinic at Dokuz
(Cushner-Weinstein et al., 2003; Williams et al., 2003). The Eylul University School of Medicine Hospital in 2010. The data
results from a recent study by Wood et al. (2008) showed related to epilepsy included the age of the onset of the disease, the
that the only factor associated with maternal depressive duration of illness, modalities and dosages of antiepileptic treat-
symptoms was the presence of behavior problems in the ment, intractability to antiepileptic treatment, type of seizures,
child with epilepsy. frequency of seizures and the comorbidity of motor or mental retar-
It has been suggested that the familial anxiety causing dation. Patients who do not achieve seizure control after having
activity limitations decreases the quality of life for the child tried 2—3 antiepileptic drugs were defined as having intractable
and the family. Parents who have high anxiety levels may epilepsy (Cross et al., 2006). The data were obtained from the
patient files at the time of the pediatric neurology department visit.
have a less understanding of what constitutes a higher risk
For the entire study group, mental retardation diagnoses were
for their children and may misinterpret the condition of their
determined by using psychiatric interview by an experienced child
children (Williams et al., 2003). and adolescent psychiatrist. An intelligence scale was not applied
Although the effect of childhood epilepsy on mothers’ to the children.
psychological health has been increasingly addressed, the All mothers were asked to complete the Beck Depression Inven-
influence on mothers’ attitudes and family functioning has tory, State-Trait Anxiety Inventory, Parental Attitude Research
attracted less interest. It has not yet fully been understood Instrument and Family Assessment Device in separate rooms in
as to how the mothers’ anxiety, depression, attitudes and the clinic (Beck et al., 1961; Spielberger et al., 1970; Schaefer
the family functions relate to epilepsy. and Bell, 1958; Epstein et al., 1983) For depressive symptoms, we
used Beck Depression Inventory which was developed by Beck (Beck
Maternal reactions to a child with epilepsy 215

et al., 1961) and commonly used to assess depressive symptoms The sociodemographic features of the children and the
in clinical settings (Ireys et al., 2001; Mulhern et al., 1992). For mothers are summarized in Table 2.
anxiety symptoms, we used State-Trait Anxiety Inventory. State- The seizure related variables are summarized in Table 3.
Trait Anxiety Inventory has been used in studies assessing the
impact of chronic medical conditions on psychological well being of
patients and their families (Vandvik and Eckblad, 1991). Mothers’ Comparison of scores of Beck Depression
attitudes were evaluated with Parental Attitude Research Inven- Inventory, State-Trait Anxiety Inventory, Parental
tory. The Attitude of Over-parenting refers to an over controlling, Attitude Research Instrument, and Family
anxious and over-demanding parental attitude. A Democratic Atti-
Assessment Device
tude describes an encouraging supportive and sharing relationship.
Attitude of Hostility and Rejection refers to nervous, distressed
and angry mothers in relationship with her children. Marital Discor- Mothers of the children with epilepsy had significantly higher
dance describes marital discordance on the child rearing activities depression scores (p = 0.007) and state anxiety (p = 0.001)
of the parents. Authoritarian Attitude reflects over-punishing and compared to mothers of the control group. They demon-
a rigid parental attitude (Schaefer and Bell, 1958). Parental Atti- strated significantly lower scores in Democratic Attitude
tude Research Inventory has been used as a parental adjustment (p = 0.000). These mothers had significantly higher scores
measure in families of disabled children (Pal and Chaudhury, 1998). Attitude of Hostility and Rejection (p = 0.000), Marital Dis-
Family functioning was assessed with Family Assessment Device. cordance (p = 0.000) and Authoritarian Attitude (p = 0.000)
Family Assessment Device has been used in several studies to assess
as compared to mothers of the control group. Comparison
the functioning among mothers and fathers of children with chronic
conditions like juvenile rheumatic disease and juvenile diabetes
of scores of Beck Depression Inventory, State-Trait Anxiety
(Frank et al., 1998; Timko et al., 1992). Problem Solving reflects Inventory, Parental Attitude Research Instrument, and Fam-
the family’s ability to resolve problems. Communication refers to ily Assessment Device are summarized in Table 4.
the effectiveness, extent, clarity and directness of information
exchange in the family (Epstein et al., 1983). Roles describe the
The relation of duration of epilepsy with scores of
efficacy with which family tasks are allocated and accomplished.
Affective Responsiveness refers to the ability of family members Beck Depression Inventory, State-Trait Anxiety
to respond with appropriate emotion, encompassing feelings of Inventory, Parental Attitude Research Instrument
welfare (joy, love, concern, affection) and emergency (sadness, and Family Assessment Device in mothers of
depression, anger fear). Affective Involvement refers to the quality children with epilepsy
of interest, concern, and investment that family members have for
each other. Behavior Control describes the standards and attitudes
The mean duration of illness for children diagnosed with
for behavior. General Functioning describes a general problem in
all functions in the family (Epstein et al., 1983). epilepsy was 37.70 ± 34.05 (r: 2—144 months).
The reliability and validity of all these instruments have been There was a statistically significant positive correlation
established in the Turkish population (Oner, 1996). The scales and between the duration of epilepsy and the problematic family
their adaptations are summarized in Table 1. All questionnaires functioning scores like Problem Solving (r = 0.355, p = 0.011),
were self-report inventories that are commonly used in psychiatric Communication (r = 0.415, p = 0.003), Affective Involvement
studies and are applicable to chronic conditions (Ireys et al., 2001; (r = 0.322, p = 0.022), Behavior Control (r = 0.492, p = 0.003)
Mulhern et al., 1992; Vandvik and Eckblad, 1991; Pal and Chaudhury, and General Functioning (r = 0.492, p = 0.000). The values up
1998; Frank et al., 1998; Timko et al., 1992). 2 points (clinical cut off) were to be accepted as abnormal
for Family Assessment Device. The longer the duration of the
Statistical assessment illness, the worse the family functions were in the present
study.
Statistical analysis was performed using a computer package pro-
gram SPSS 15.0 (SPSS Inc., Chicago, IL). Chi-square test was used for
categorical data and T-test was used for parametric data (Portney The relation of the type and frequency of seizures
and Watkins, 1993a). In this study, the cases and controls were with the scale scores of the mothers of children
compared regarding Beck Depression Inventory, State-Trait Anxi- with epilepsy
ety Inventory, Parental Attitude Research Instrument and Family
Assessment Device scales using Student’s t-test. The relations of Mothers of the group of children with more frequent
duration of epilepsy with scores of Beck Depression Inventory, State-
seizures (more than one seizure in a month) had significantly
Trait Anxiety Inventory, Parental Attitude Research Instrument and
Family Assessment Device in mothers of children with epilepsy
higher Attitude of Over-parenting scores compared to the
were determined by Pearson’s correlation test. The type of seizure group of mothers whose children had less frequent seizures
and the scales applied to the mothers were analyzed with the (p = 0.024).
Mann—Whitney U-test. These tests have been commonly used in No statistically significant relationship was found
these types of psychiatric studies (Portney and Watkins, 1993b). A between the types of seizures with the scale scores of the
p value of <0.05 was considered significant. mothers of children with epilepsy.

Results The relation of the intractability of drug therapy


with the scale scores of the mothers of children
Mean age and gender distribution of the study and con- with epilepsy
trol groups are summarized in Table 2. Regarding age and
gender, there were no statistically significant differences Patients who do not achieve seizure control after having
between the two groups (p = 0.907, p = 0.500, respectively). tried 2—3 antiepileptic drugs were defined as hav-
216 A. Pekcanlar Akay et al.

Table 1 Beck Depression Inventory, State-Trait Anxiety Inventory, Parental Attitude Research Instrument, Family Assessment
Device and their Turkish adaptations.

Scales Subscales Scores Evaluation of Devise and


scales adaptation

Beck Depression Sensibility 0—3 points 0—13 points: No Devised by Beck in


Inventory scores depression 1961.
Pessimism 14—24 points: Adopted by Tegin
Moderate in Turkey in 1980.
depression
Sense of failure Higher than 25
points: Severe
depression
Sense of guilt
Self-dissatisfaction
Self-accusation
Desire to commit suicide
Hysterical weeping seizures
Nervous breakdown
Social retreat indecisiveness
Conflicting self-image
Sleep disturbances tiredness
Loss of appetite
Loss of weight
Psychological complaints
Lack of sexual desire.
State-Trait Anxiety State anxiety: transient momentary 1, not at all, to Higher the score Devised by
Inventory emotional status that results from 4, very much so of the scales, the Spielbelger et al.
situational stress that fluctuates in more anxiety in 1970.
time and intensity display by the
patients.
Trait anxiety: predisposition of Adopted by Oner
people to react with anxiety when a and Le Compte in
stressful situation arises Turkey in 1985.
Parental Attitude Attitude of Over-parenting: over 1, not at all, to Higher the score Devised by
Research Instrument controlling, anxious and 4, very much so of the factor, the Schaefer and Bell
over-demanding parental attitude more the attitude in 1958.
is displayed by the
parents.
Democratic Attitude: encourages a Adopted by Küçük
supportive and a sharing relationship in Turkey in 1987.
Attitude of Hostility and Rejection:
nervous, distressed and angry
mothers in relationship with her
children
Marital Discordance: marital
discordance on the child rearing
activities of the parents
Authoritarian Attitude:
over-punishing and a rigid parental
attitude
Family Assessment Problem Solving: reflects the family’s A 4-point Liker The values up 2 Devised by Epstein
Device ability to resolve problems and the scale from points (clinical cut et al. in 1983.
steps they go through to do so. ‘‘strongly off) are to accept
disagree’’ to as abnormal.
strongly agree
Communication: refers to the Adopted by Bulut
effectiveness, extent, clarity and et al. in Turkey in
directness of information exchange in 1989.
the family.
Maternal reactions to a child with epilepsy 217

Table 2 Sociodemographic data of children and the mothers.

Epilepsy n: 50 Control n: 50
Mean ± standard deviation Mean ± standard deviation

Mean age of childerns (years) 9.76 ± 4.33 (range: 2—17) 9.86 ± 4.25 (range: 2—17)
Mean age of mothers (years) 35.76 ± 7.46 (range: 20—52) 37.55 ± 6.89 (range: 28—53)
n % n %
Gender
Female 27 54 22 44
Male 23 46 28 56
Education of children
No school 9 18 9 18
Preschooler 3 6 39 78
Elementary 34 68 2 4
High school 4 8
Education of the mother
Elementary 23 46 20 40
High school 26 52 25 50
University 1 2 5 10
Profession of the mother
Laborer 3 6 19 61.3
Government worker 10 20 2 6.5
Housewife 27 74 10 32.2
Social insurance
Yes 41 82 48 96
No 9 18 2 4

Table 3 Seizure related variables in epilepsy group.

Mean ± Standard deviation

The age of onset of illness (years) 6.59 ± 3.83 (range: 1—13)


Duration of illness (months) 37.70 ± 34.05 (range: 2—144)
n %
Type of seizure
Generalized
Absans 8 16
Generalized tonic-clonic 36 72
Partial
Complex partial 2 4
Simple partial 2 4
Rolandic 1 2
Other
West syndrome 1 2
Antiepileptic drugs
None 4 8
Monotherapy 38 76
Polytherapy 8 16
Seizure frequency
≤10/year 16 32
1—2/month 33 66
2—3/week 1 2
Response to drug
No response (intractability of seizures) 5 10
Positive response 45 90
Comorbid motor or mental retardation
Yes 15 30
No 35 70
218 A. Pekcanlar Akay et al.

Table 4 All scale results of mothers of children with epilepsy and control group (mean values).

Epilepsy n: 50 Control n: 50 p*
Mean ± standard Mean ± standard
deviation deviation

Beck Depression Inventory 11.66 ± 8.66 7.60 ± 5.55 0.007


State anxiety 39.04 ± 9.77 32.74 ± 9.15 0.001
Trait anxiety 41.00 ± 7.32 42.54 ± 7.52 0.302
Attitude of Over-parenting 42.44 ± 3.47 42.44 ± 8.95 1.000
Democratic Attitude 25.16 ± 2.04 28.80 ± 3.88 0.000
Attitude of Hostility and Rejection 35.86 ± 3.74 28.08 ± 8.53 0.000
Marital Discordance 18.02 ± 2.12 14.72 ± 4.45 0.000
Authoritarian Attitude 40.74 ± 4.79 33.68 ± 9.20 0.000
Problem Solving 1.91 ± 0.67 1.98 ± 0.64 0.547
Communication 1.77 ± 0.53 1.84 ± 0.55 0.567
Roles 1.95 ± 0.44 1.96 ± 0.44 0.881
Affective Responsiveness 1.78 ± 0.59 1.83 ± 0.63 0.644
Affective Involvement 1.99 ± 0.48 1.99 ± 0.47 0.988
Behavior Control 1.78 ± 0.41 1.75 ± 0.44 0.764
General Functioning 1.80 ± 0.53 1.85 ± 0.57 0.655
* t-Test was used.

ing intractable epilepsy. Mothers of the children with tization. The families have to deal with stressors regarding
intractable seizures had significantly higher trait anxiety the illness like frequent health checkups and treatment pro-
scores compared to the group of mothers whose children cedures (Lv et al., 2009). The high level of anxiety and
achieved seizure control (p = 0.027). depression among these mothers might affect their attitudes
towards their children and family functioning.
In the present study, mothers of the children with
The relation of the antiepileptic drug use with the
epilepsy obtained lower scores in the areas of Democratic
scale scores of the mothers of children with Attitude compared to the mothers of the control group. This
epilepsy result means that mothers of the children with epilepsy,
as compared to the mothers of the control group, failed
Mothers of the group of children with epilepsy that had no to be a supportive parent and to develop a sharing rela-
medication had significantly higher Behavior Control scores tionship with their children. In this study, mothers whose
compared to the group of mothers whose children had one children had epilepsy had increased attitudes of hostility
or more antiepileptic drugs (p = 0.019). and rejection, Marital Discordance on the child rearing activ-
ities and over-punishing, and a rigid parental attitude as
The relation of comorbid motor and mental compared to mothers of the control group. This might indi-
retardation with the scale scores of the mothers of cate that mothers of children with epilepsy are unhappier
and more unsatisfied with respect to their maternal role
children with epilepsy
than the mothers of the control group. Mothers of the chil-
dren with epilepsy were nervous, distressed and angry in
Mothers of the children with epilepsy, in the presence of
their relationships with their children. The chronic illness
motor or mental retardation had significantly higher Prob-
of children could change family roles causing anger or guilt
lem Solving scores compared to the group of mothers whose
in the parents. Parents could become isolated from family
children without motor or mental retardation (p = 0.036).
and friends, which may limit the parents’ ability to pursue
The values up to 2 points (clinical cut off) were to be
their own interests (Cole and Reiss, 1993). Epilepsy could
accepted as abnormal for Problem Solving scores. Higher
create a significant negative social stigmatization or having
Problem Solving scores as family function refer to a higher
a child with chronic disorder may cause trouble undertaking
problem solving deficit.
the motherhood role (Wirrel et al., 2008).
It was shown that the longer the duration of the illness,
Discussion the worse were the family functions like ‘Problem Solving’,
‘Communication’, ‘Affective Involvement’, ‘Behavioral Con-
The mothers of children diagnosed with epilepsy reported trol’ and ‘General Functioning’ in the present study.
a higher level of depression and state anxiety compared to As the duration of the illness increases, the impairment
the mothers of the control group in the present study, which in family functions might reflect a poor adaptation to the
was similar to previous studies (Ferro and Speechley, 2009; illness. Chronic conditions could upset existing structures
Williams et al., 2003). These results may have been caused within the family system and may provoke changes to restore
by the unpredictable course of the illness when the child may equilibrium and reestablish or recreate roles, rituals, and
have been at risk of death during seizures and social stigma- daily routines. Families may deal with illness-related stres-
Maternal reactions to a child with epilepsy 219

sors such as the need for frequent medical visits, the be kept in mind by pediatricians. The psychosocial aspects
demands of a multicomponent treatment regimen, and of epilepsy have to be managed while working with these
an unpredictable illness course. Parents of children with patients and their families to explain the importance of
epilepsy might display controlled behavior in expressing preventive approaches and treatment interventions.
their feelings, especially negative feelings such as sad-
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