Keywords
depression - anxiety - caregivers - children with epilepsy - Burkina Faso
Background
Epilepsy is a common and chronic neurological disorder influencing children's cognitive
and behavioral performance.[1] Recurrent seizures may lead to irreversible effects on family members, especially
parents.[2] Diagnosis of epilepsy in a child brought with it a series of consequences for the
family, and most parents got affected by it: the loss of a perfect child and the realization
that the child might always be different from other children because of their illness.[3] Primary caregivers of children with epilepsy (CWE) report high levels of depression
and anxiety.[4]
[5] Compared with families of healthy children, caregivers of CWE have been found to
have significantly higher levels of depression and anxiety.[6] The number of research done on the effects of epilepsy on family members and other
caregivers are so few.[7] In sub-Saharan Africa, there are few studies regarding the prevalence of anxiety
and depression among caregivers of patients with epilepsy.[8]
[9] In Burkina Faso, to our knowledge, there is no study on anxiety and depression among
caregivers of people with epilepsy. The only study performed concerns the depression
of adult patients with epilepsy, with a high prevalence of depression symptoms among
adult patients with epilepsy attending in a tertiary hospital of Ouagadougou (56%).[10] The objective of this study was to determine the prevalence of anxiety and depression
among caregivers of CWE in Burkina Faso.
Patients and Methods
This study was approved by the Ethical Board of Medical School of Joseph Ki Zerbo
University and the Local Ethical Committee of Yalgado Ouédraogo University Teaching
hospital.
Study Profile
This cross-sectional study was performed in the Department of Neurology of Yalgado
Ouédraogo University Teaching Hospital during the period from May 7th to August 18th,
2020.
Study Location
Burkina Faso is a French speaking country located in West Africa without access to
the sea. Its population was estimated in 2016 as 19,034,397 inhabitants. Ouagadougou
is its capital and the largest city of the country. The city has public health infrastructures
such as the Yalgado Ouédraogo University Hospital, Tengandogo University Hospital,
Charles De Gaulle Pediatric University Hospital, Bogodogo Hospital and many private
health infrastructures. The department of neurology belongs to the department of medicine.
It has been into existence since March 2003. It provides care for patients with neurological
pathologies and pathologies with neurological repercussions. The neurology department
has 23 inpatient beds spread over five wards.
Study Population
This study included children and adolescents with epilepsy attending in neurology
department outpatient's consultation of the Yalgado Ouédraogo University Teaching
Hospital during the study period and their principle caregivers for whom informed
consent was obtained. The inclusion criteria were: (1) the child was less than 18
years old; (2) epilepsy was clinically diagnosed according to the International League
Against Epilepsy (ILAE) 2017 criteria; (3) the caregivers were older than 18 years;
and (4) the caregiver of the child with epilepsy was willing to participate in this
study. Principle caregivers of CWE, defined as the individuals who had most responsibility
for the child's care (sisters, brothers, fathers, mothers, grandfathers, grandmothers).
The exclusion criteria were: (1) other chronic diseases in the child with epilepsy,
which could affect the emotional states of caregivers (i.e., congenital heart disease,
diabetes); (2) lack of consent, (3) caregivers with diagnosed psychiatric disorders.
Sampling
Our sample was non-random with systematic recruitment of caregivers of children and
adolescents with epilepsy followed on an outpatient basis in the neurology department
during the study period.
Procedure
The caregiver who came along with a child with epilepsy for outpatient consultation
in the neurology department was recruited. When the child arrived at the Neurology
Department for the regular follow-up appointments, the parents were approached about
participating in the study. All caregivers agreed to participate and signed the informed
consent. Each caregiver was matched to a child with epilepsy.
Data Collection and Analysis
Survey
The data were collected by using a hetero-administered anonymous questionnaire, containing
information about CWE and their caregivers. Data were collected. The questionnaire
was made by the first five authors of the article (D.A.A., K.J.M.A., R.B., D.A., and
B.Z.). The questionnaire was divided into two sections. The first section was focused
on the characteristics of CWE, including: (1) children's basic characteristics (age,
gender, place of residence); (2) disease status (seizure type, duration of epilepsy,
seizure frequency). The second section was focused on the caregivers, including: (1)
basic characteristics (gender of caregivers, age of caregivers, caregivers “education
level, caregivers” working status, place of residence, marital status) and their past
medical status (anxiety, depression, or psychiatric diseases).The initial questionnaire
was pre-tested in five caregivers of CWE to gauge the acceptability of the study and
to assess their interest in the study. The questionnaire was validated by C.N., R.B.,
A.M., K.K., and J.K.
Assessment of Anxiety and Depression
All the caregivers of CWE were assessed on their level of anxiety by the State-Trait
Anxiety Inventory scale, French version comprising 20 items. Each item is rated from
1 to 4. The total score varies from 20 to 80. The level of anxiety was classified
into five categories: greater than 65 = very high, between 56 and 65 = high, between
46 and 55 = medium, between 36 and 45 = weak, less than 36 = no anxiety.[11] The depression was assessed using the Beck Depression Inventory-Fast Screen scale,
a short version of the Beck Depression Inventory II composed of seven items.[12] The seven items include sadness, pessimism, feelings of failure in the past, loss
of pleasure, low self-esteem, self-criticism, and suicidal thoughts.[13] Following the recommendations of the BDII manual, caregivers with a BDI-II score
of ≥4 points were classified as having symptoms of depression.
Data Analysis
Data collected were analyzed on microcomputer using Epidata software version 7.2.1.0.
The quantitative variables were expressed by their mean ± standard deviation, and
the qualitative variables by number and percentage. For the comparison of proportions,
the Chi-square test and Fischer's exact test were used. The threshold of statistical
significance was defined for a probability p less than or equal to 0.05 for the Chi-square and Fischer's exact tests. The threshold
of statistical significance was defined for a probability if p< 0.05.
Results
Sociodemographic and Clinical Characteristics of Participants
One hundred CWE were included in the study. The majority of them were boys (55%).
Their mean age was 12.34 years, ranging from 4 to 17 years. Most of the children had
generalized epilepsy (55%). The mean duration of epilepsy was 4 years. Forty-five
percent of CWE had more than three seizures per month. In line with the number of
patients, 100 caregivers were enrolled in this study. The mean age of caregivers was
37.75 ± 10.69 years ranging from 20 to 69 years. Most of them were female gender (73%),
aged <40 years (59%), not educated (37%), residing in rural areas (79%), and merchants
(33%). The principle caregivers were mothers (67%), fathers (20%), and sisters (7%).
The mean age of mothers and fathers was respectively 36.05 ± 8.24 years and 45.85 ± 12.17
years. [Table 1] gives the sociodemographic and clinical characteristics of participants to the study.
Table 1
Sociodemographic characteristics of participants to the study
Variable
|
Study population (N = 100)
|
Frequency (%)
|
Sociodemographic characteristics of caregivers
|
Age (years)
|
< 40
|
59
|
59
|
40–59
|
27
|
27
|
≥60
|
14
|
14
|
Gender
|
Women
|
73
|
73
|
Male
|
27
|
27
|
Urban
|
79
|
79
|
Rural
|
21
|
21
|
Educational status
|
Not scolarized
|
37
|
37
|
Primary
|
16
|
16
|
Secondary
|
26
|
26
|
University
|
20
|
20
|
Relationship with child
|
Mothers
|
67
|
67
|
Fathers
|
20
|
20
|
Sisters
|
7
|
7
|
Grandparents
|
6
|
6
|
Marital status
|
Married
|
89
|
89
|
Single
|
11
|
11
|
Occupation
|
Merchants
|
33
|
33
|
House women
|
32
|
32
|
Civil servant
|
23
|
23
|
Students
|
6
|
6
|
Famer
|
3
|
3
|
Retired
|
3
|
3
|
Characteristics of CWE
|
|
Age (years)
|
0–5
|
54
|
54
|
6–11
|
24
|
24
|
12–17
|
17
|
17
|
> 17
|
5
|
5
|
Gender
|
Boys
|
45
|
45
|
Girls
|
55
|
55
|
Sixteen types
|
Generalized
|
45
|
45
|
Focal
|
55
|
55
|
Epilepsy duration (years)
|
0–5
|
74
|
74
|
6–11
|
17
|
17
|
≥12
|
9
|
9
|
Seizures frequency per month
|
1
|
19
|
19
|
2–3
|
36
|
36
|
> 3
|
45
|
45
|
Prevalence of Anxiety and Its Risk Factors
The mean STAI YB score of 37.73 ± 9.11 ranging from 21 to 60. Fifty-six percent of
parents were found to be anxious. Of them, 33 (58.9%) had fair anxiety, 18 (32.1%)
moderate anxiety, and five (8.9%) severe anxiety. The mean age of caregivers with
anxiety was 37.37 ± 11.27 years. The symptoms of anxiety were nervousness (98.2%),
feelings of vulnerability (87.5%), feelings of failure and worry (55.3%), feelings
of insecurity (42.85%), and a lack of confidence in self (39.28%). The factors influencing
anxiety among caregivers was female gender (p = 0.04), being patient's mothers (p = 0.04), and caring male patients (p = 0.04). [Table 2]
shows the factors associated or not with caregiver's anxiety.
Table 2
Factors associated with anxiety of caregivers of CWE
Variable
|
Study population
|
With anxiety
|
Without anxiety
|
p-Value
|
Sociodemographic characteristics of caregivers
|
Age (years)
|
< 40
|
59
|
34 (57.6%)
|
25
|
0.59
|
40–59
|
27
|
19 (70.4%)
|
8
|
|
≥60
|
14
|
3 (75%)
|
11
|
|
Gender
|
Women
|
73
|
46 (63%)
|
27
|
0.48
|
Male
|
27
|
10 (37%)
|
17
|
|
Residence
|
Urban
|
79
|
44 (55.7%)
|
35
|
0.48
|
Rural
|
21
|
12 (57.1%)
|
9
|
|
Educational status
|
Not scolarized
|
37
|
16 (43.2%)
|
21
|
0.18
|
Primary
|
16
|
9 (56.2%)
|
7
|
|
Secondary
|
26
|
18 (69.2%)
|
8
|
|
University
|
20
|
12 (60%)
|
8
|
|
Type of family caregivers
|
Mothers
|
67
|
43 (64.2%)
|
24
|
0.04
|
Fathers
|
20
|
6 (30%)
|
14
|
|
Sisters
|
7
|
3 (57.1%)
|
4
|
|
Grandparents
|
6
|
4 (66.7%)
|
2
|
|
Marital status
|
Married
|
89
|
48 (53.9%)
|
41
|
0.34
|
Single
|
11
|
8 (72.7%)
|
3
|
|
Occupation
|
Merchants
|
33
|
14 (42.4%)
|
19
|
0.31
|
House women
|
32
|
21 (65.6%)
|
11
|
|
Civil servant
|
23
|
13 (56.5%)
|
10
|
|
Students
|
6
|
5 (83.3%)
|
1
|
|
Famer
|
3
|
2 (66.7%)
|
1
|
|
Retired
|
3
|
2 (66.7%)
|
1
|
|
Characteristics of CWE
|
Age (years)
|
0–5
|
54
|
29 (53.7%)
|
25
|
0.77
|
6–11
|
24
|
15 (62.5%)
|
9
|
|
12–17
|
17
|
10 (58.8%)
|
7
|
|
> 17
|
5
|
2 (40%)
|
3
|
|
Gender
|
Boys
|
45
|
26 (57.8%)
|
19
|
0.006
|
Girls
|
55
|
30 (54.5%)
|
25
|
|
Sixteen types
|
Generalized
|
45
|
29 (64.4%)
|
16
|
0.52
|
Focal
|
55
|
27 (49.1%)
|
28
|
|
Epilepsy duration (years)
|
0–5
|
74
|
40 (54%)
|
34
|
0.09
|
6–11
|
17
|
8 (47%)
|
9
|
|
≥12
|
9
|
8 (88.9%)
|
1
|
|
Seizures frequency per year
|
0–5
|
19
|
13 (68.4%)
|
6
|
0.64
|
5–30
|
36
|
20 (55.5)
|
16
|
|
> 30
|
45
|
23 (51.1%)
|
22
|
|
Prevalence of Depression and Its Risk Factors
Twenty-seven percent of caregivers had depression symptoms with a mean BDI-FS score
of 2.92 ± 4.11 with extremes of 0 and 10. The mean age of depressed caregivers was
37.51 ± 12.29 years. The symptoms of depression were mood sadness (92.6%), pessimism
(55.5%), past failure (74.1%), negative self-criticism (74.1%), and desire for suicide
(41.7%). The factors associated with caregivers depression was being married (p = 0.03) and having children with less seizures per month (p = 0.04). [Table 3] shows the factors associated or not with caregivers depression.
Table 3
Factors associated with depression of caregivers of CWE
Variable
|
Study population
|
With depression
|
Without depression
|
p-Value
|
Sociodemographic characteristics of caregivers
|
Age (years)
|
< 40
|
59
|
18 (36%)
|
41
|
0.82
|
40–60
|
27
|
7 (18.9%)
|
20
|
|
≥60
|
14
|
2 (50%)
|
12
|
|
Gender
|
Men
|
73
|
21 (28.8%)
|
52
|
0.34
|
Women
|
27
|
6 (22.2%)
|
21
|
|
Educational status
|
Out of school
|
37
|
10 (27%)
|
27
|
0.48
|
Primary
|
16
|
3 (18.7%)
|
13
|
|
Secondary
|
27
|
10 (37%)
|
17
|
|
University
|
20
|
4 (20)%
|
16
|
|
Residence
|
Rural
|
21
|
4 (19%)
|
17
|
0.51
|
Urban
|
79
|
23 (29.1%)
|
56
|
|
Marital status
|
Married
|
89
|
26 (37.7%)
|
63
|
0.03
|
Single
|
11
|
1 (9.1%)
|
10
|
|
Family caregivers
|
Mothers
|
67
|
19 (28.3%)
|
48
|
0.23
|
Fathers
|
20
|
5 (25%)
|
15
|
|
Sisters
|
7
|
0
|
7
|
|
Grandparents
|
6
|
3 (50%)
|
3
|
|
Occupation
|
|
0.73
|
Merchants
|
33
|
11
|
22
|
|
House women
|
3
|
1
|
2
|
|
Civil servant
|
6
|
0
|
6
|
|
Students
|
23
|
7
|
16
|
|
Farmer
|
32
|
7
|
25
|
|
Retired
|
3
|
1
|
2
|
|
Children (n = 100)
|
Age group (years)
|
0–5
|
54
|
15 (27.8%)
|
39
|
0.36
|
6–11
|
24
|
4 (16.7%)
|
20
|
|
12–17
|
17
|
7 (41.2%)
|
10
|
|
> 17
|
5
|
1 (20%)
|
4
|
|
Gender
|
Female
|
45
|
14 (31.1%)
|
31
|
0.07
|
Male
|
55
|
13 (23.6%)
|
42
|
|
Sixteen types
|
Generalized
|
45
|
11 (24.4%)
|
34
|
0.43
|
Focal
|
55
|
16 (29.1%)
|
39
|
|
Epilepsy duration
|
0–5
|
74
|
18 (24.3%)
|
56
|
0.08
|
6–11
|
17
|
5 (29.4%)
|
12
|
|
12–17
|
35
|
4 (11.4%)
|
31
|
|
Epilepsy frequency per year
|
0–5
|
19
|
8 (42.1%)
|
11
|
0.040
|
6–30
|
36
|
5 (13.9%)
|
31
|
|
> 30
|
45
|
14 (31.1%)
|
31
|
|
Discussion
We conducted a cross-sectional study to evaluate anxiety and depression status among
caregivers of CWE in Burkina Faso, and examined which factors were associated with
anxiety and depression. The caregivers included in the study were parents (87%), female
gender with majority of mothers (73%). Similar studies conducted across different
countries had found that most of the caregivers were female and mothers of CWE.[14]
[15]
[16]
[17] The prevalence of anxiety in this study was 56%, in line with the literature in
which its value varied from 9 to 58%.[18] However, the high prevalence was also similar to those observed in China (56.2%),[4] Saudi Arabia (55%),[19] and United States (64.20%).[20] In contrast, lower prevalence was observed in Iran (46.7%),[21] Nigeria (12 and 38.6%),[8]
[9] and China (25.7%).[22] Regarding depression, its prevalence (27%) was lower than that observed in Saudi
Arabia (38.7%.),[19] China (38.40%),[23] Nigeria (50.5%),[8] and Hussain in United States (46.91%)[20] but higher than those observed in another studies in China (21.67%),[23] and Nigeria (18.7%).[9] Twenty-two percent of caregivers had both anxiety and depression, in lower prevalence
than that observed in Saudi Arabia (32%).[19] The differences in levels of anxiety, depression, and both anxiety and depression
among different studies might be because of socio-economic and cultural differences,
differences in availability of treatment options, age of patients and differences
in resilience of people across different study settings. However, this current study
suggest that neurologists as psychiatrics should pay more attention to psychoemotional
symptoms among caregivers of CWE. The second objective of this study was to examine
the factors associated with anxiety and depression of caregivers of CWE. Being a women
and mother of a child with epilepsy was associated with anxiety of caregivers. In
several studies, mothers are significantly affected by anxiety as evidenced by several
studies.[4]
[19]
[24]
[25] Mothers plays a pivotal role in the provision of health care services to children.[26]
[27] Women are usually more closely and emotionally involved in caregiving, and are traditionally
expected to be involved with household work than men; thus bringing them into more
contact with the patients.[28] The caregivers of boys with epilepsy were significantly affected by anxiety, unlike
the study of Yusuf et al in Nigeria[9] who found that caregivers of girls with epilepsy were mostly affected. A study from
Saudi Arabia had found that parental anxiety was not linked to the sex of the child
with epilepsy.[19] This situation could be explained by the fact that the majority of CWE were of male
gender. Moreover, in the African context, parents give more interest to the education
of boys than that of girls. In the present study, caregivers who were married were
significantly affected by depression than single (23 vs. 9%). This may be due to the
majority of caregivers in the current study being married, which induces family burden
in addition to special care for an epileptic child which affect mother and may lead
to depression. Similar results were found by Rehab in Egypt where 81.0% of married
mothers were depressed and there was a statistically significant relationship between
marital status and depression.[29] Our study found that lower seizures frequency in child with epilepsy was significantly
associated with 'caregiver's depression. Riechmann et al in Germany[30] observed a significantly higher frequency of depression in parents with children
having active epilepsy than those with remission, respectively. As for Babalola et
al in Nigeria,[8] they observed significantly more depression in parents whose children had more seizures.
The fact that parents of children with fewer seizures are more affected by depression
could be explained by the fact that the majority of patients (74%) had a short duration
of disease (less than 6 years). Therefore, this did not allow the caregivers to adapt
to the unpredictability of seizures.
Study Limitations
This study provided insight into the impact of epilepsy on the health status of caregivers
of CWE. However, it have several limits. In addition, several data relating to the
caregivers which could better analyze the factors of risk of anxiety and depression
(duration of caring of child; presence of other pathologies in the family, income
of caregivers, their responsibilities and knowledge and attitudes of caregivers about
epilepsy) could not be included in this present study.
Conclusion
The study revealed very high rates of anxiety and depressive disorders among caregivers
of CWE in Burkina Faso. The presence of anxiety and depressive disorder was significantly
associated with gender of caregivers, relation to patient, marital status, gender
of patients, and frequency of epilepsy seizure.