Keywords
epilepsy - perception - behaviour - stigma - supernatural
Introduction
The knowledge and perception regarding the nature and cause of epilepsy among the
general public are variable.[1] In developing countries, a vast majority of people attribute epileptic symptoms
as supernatural phenomena, which contradict the biomedical model of epilepsy envisaged
by modern epileptologists.[2]
[3]
[4]
[5]
Perceptions of the sufferer about the cause of epilepsy as well as the perception
about others’ reaction toward their sufferings influence the choice of treatment and
its outcome.[6]
People suffering from epilepsy often do not seek professional help. Reasons for this
include negative attitudes toward the help available, as well as concerns about cost
of treatment, transportation, or inconvenience, fear of breach in confidentiality,
and feeling like they can handle the problem on their own. In Indian subcontinent,
traditional healers are one of the main service providers and most of those who believed
in supernatural causation of epilepsy primarily consult indigenous healers.[2]
[7]
[8]
[9]
[10] This often results in delay in initiation of antiepileptic treatment and many remain
untreated in the community.
In view of this, it becomes imperative to generate more data regarding perception
of the cause of epilepsy and subsequent help-seeking behavior in Indian population.
This study aimed to explore the perception of the causes of illness and patterns of
help-seeking behavior from the patient and their families, attending the outpatient
department and indoor in a tertiary care hospital in Eastern India.
Methods
We conducted this study at a multispecialty teaching tertiary-care hospital that provides
services to a major area in eastern state of India. We selected our subjects using
the following criteria:
Inclusion Criteria
Participants who fulfilled the International League Against Epilepsy (ILAE) criteria,[11] and were accompanied by a reliable informant and willing to participate in the study
by providing answers to the questionnaire and providing an informed consent were included.
Age was not a bar, but for subjects below 18 years, the accompanying parent was interrogated
and his/her demographic profile was recorded after obtaining consent for participation.
Exclusion Criteria
Patients with a history of brain surgery or traumatic brain injury, concomitant nonantiseizure
medication with central nervous system effects, drug abuse, and having other progressive
medical, neurological, or psychiatric illness were excluded.
One hundred and fifty consecutive patients accompanied by a reliable informant or
family member fulfilling the criteria were approached for consent. All the subjects
consented to participate in the study.
Sociodemographic and clinical data of all the eligible subjects was collected. Perceived
cause of illness and help-seeking pattern were explored from the patient and informant
by administering proper instrument.
Instruments
The following instruments, as required, were used:
-
Sociodemo graphic profile sheet: It was used to record the relevant sociodemographic data on gender, education, marital
status, and background (rural or urban).
-
Clinical profile sheet: It was used to record the following clinical details: diagnosis, duration of illness,
most prominent symptoms, treatment history, etc.
-
Questionnaire for exploring perceived cause of illness: This was specifically designed for this study. The questionnaire was designed by
the investigators after an extensive literature search. Prior to the study, it was
pretested on a sample of 20 individuals. It was validated by the Machine Learning
unit, Indian Statistical Institute, Kolkata; and accordingly, minor changes were made
(unpublished data). Perceived causes were divided into two broad categories: causes
inside the body and causes outside the body. The former was further subdivided into
bodily pathology, habits/practices, and psychological causes, while the later consisted
of supernatural causes. Among many responses stated by the patient “the predominant”
one was considered as the response the patient considered having highest percentage
of causal relationship with the disease, “spontaneous” one was considered which came
out spontaneously, and “on probing” was the response they considered the right one
from a group of multiple choices they were given by the interviewer.
-
Questionnaire for assessing pattern for help-seeking: This was also specifically designed for the study after extensive literature search.
This included 24 types of help-seeking behavior. For information and analysis purposes,
these responses were divided into two broad categories—professional medical help (which
comprises government hospital, health clinic of nongovernment organization, private
general practitioner, etc.) and nonprofessional help (comprises local herbal leader,
faith-healer, Ojha, Gunin, astrologer, healing temple, dargah, Maulavi, priest, quack,
etc.)
Statistical Analysis
Statistical tests were performed to find out the association between various perceived
causes of illness and different types of help-seeking by using the SPSS software package
for windows, version 20 (SPSS Inc., Chicago, Illinois, United States). Descriptive
data was expressed in terms of percentage, mean, and range.
We computed the association of the perception and type of help-seeking behavior with
chi-squared test, along with phi and lambda test as and when necessary as these are
ordinal and nominal variables. We used Pearson chi-squared test (χ2) test to determine whether there is a statistically significant difference between
the expected and observed frequencies of perception of the cause of epilepsy and help-seeking
behavior. We also measured Cramer’s V value (φ
c) to determine the association between the perception and help-seeking behavior. φ
c varies from 0 (corresponding to no association between perception and help-seeking)
to 1 (complete association) and can reach 1 only when each variable is completely
determined by the other.
Results
Sociodemographic Profile
Among 150 patients, 67 (44.67%) (38 boys and 29 girls) were below 18 years of age
and their parents were interviewed. The age range of the patients participated in
this study was between 3 and 65 years. Of those participated in the study, 82 were
male and 68 were female, 92 were educated up to standard X, 37 were married, 46 were
housewife or managing households, 48 were students, and 87 were from rural background
([Table 1]). Forty-one of the respondents were illiterate.
Table 1
Demographic profile of patients
|
Male
n (%)
|
Female
n (%)
|
Total
|
|
n
|
82 (54.6)
|
68 (45.33)
|
150
|
|
Marital status
|
|
Unmarried
|
63 (76.82)
|
50 (73.52)
|
113 (75.33)
|
|
Married
|
19 (23.17)
|
18 (26.47)
|
37 (24.66)
|
|
Educational status
|
|
Illiterate
|
24 (29.26)
|
17 (25)
|
41 (27.33)
|
|
Up to standard X
|
47 (57.31
|
45 (66.17)
|
92 (61.33)
|
|
Beyond standard X
|
11 (13.41)
|
6 (8.82)
|
17 (11.33)
|
|
Occupation
|
|
Employed
|
28 (34.14)
|
4 (5.88)
|
32 (21.33)
|
|
Housewife/
Household work
|
13 (15.85)
|
33 (48.52)
|
46 (30.66)
|
|
Student
|
47 (57.31)
|
31 (45.58)
|
72 (48)
|
|
Background
|
|
Rural
|
45(54.87)
|
42(61.76)
|
87 (58)
|
|
Urban
|
37(45.12)
|
26 (38.23)
|
63 (42)
|
Clinical Profile
Perceived Causes of Illness
The participants gave highly variable responses to the question that assessed their
opinion about the cause of epilepsy. According to the respondent’s perception, cause
of epilepsy was divided into two broad categories, namely causes inside the body and
causes outside the body. Causes inside the body were further divided into (i) bodily
pathology, (ii) habits and practices, and (iii) psychological causes, whereas cause
outside the body is considered as supernatural causes. Bodily pathology was further divided into following categories as per their perceptions: malfunction
on dysfunction of specific organ system or organ, physical trauma, medical illness,
operation, accidents, ingestion of poisonous food or drink, illness/accident/any event
of mother during her pregnancy, birth trauma or distress, childhood illness, or stress.
Habits and practices include masturbation, addiction of drugs and alcohol, visit to brothel, intake of
any particular food, bad association or peer group, and pressure of study. Psychological causes include too much worry and anxiety, too much mental pressure, problems due to love
affair, relational problem, and major accident or illness or bereavement of family
member. Supernatural causes include gods and goddesses, stars and astronomy, bad spirit, black magic and witchcraft,
harm caused by envious neighbor, karma or deeds of previous birth, and bad fortune.
The median number of responses endorsed by the respondents was 5 (range: 1–7) (see
[Table 2]). A total 72% of the respondents spontaneously related “bodily pathology” as the
perceived cause of epilepsy. The spontaneous response relating to “habits and practices”
and “psychological” as the perceived causes were 3.88 and 23.37%, respectively. Psychological
cause was the predominant one in female in 12.98% and in case of male it was 2.59%.
On probing, 66.23% of the respondents ascribed supernatural cause as the perceived
cause of epilepsy. In focal seizures, 25% of the female and 38% of the male ascribed
“supernatural” factors as cause. However, only 13% of female and 14% of male respondents
ascribed “supernatural” factors as their cause in case of generalized seizure. A total
of 31.8% of female and 47.6% male respondents with focal seizure revealed “bodily
pathology” as their causes, 56.5% female and 67.2% male with generalized seizure told
“bodily pathology” as their causation, and 13% female and 14.7% male with generalized
seizure had “supernatural” causation. Interestingly, 26% female patients with generalized
seizure ascribed “psychological” factors as causes.
Table 2
Patients’ perception about cause of epilepsy
|
Predominant (%)
|
Spontaneous (%)
|
On probing (%)
|
|
I. Causes inside the body
|
|
Bodily pathology
|
|
Male
|
38.96
|
48.05
|
40.25
|
|
Female
|
22.07
|
24.67
|
36.36
|
|
Total
|
61.03
|
72.72
|
76.62
|
|
Habits and practices
|
|
Male
|
2.59
|
2.59
|
3.89
|
|
Female
|
1.29
|
1.29
|
1.29
|
|
Total
|
3.88
|
3.88
|
5.18
|
|
Psychological
|
|
Male
|
2.59
|
10.38
|
27.27
|
|
Female
|
12.98
|
12.98
|
28.67
|
|
Total
|
15.57
|
23.37
|
55.84
|
|
II. Causes outside the body
|
|
Supernatural causes
|
|
Male
|
7.79
|
6.49
|
32.46
|
|
Female
|
10.38
|
14.28
|
33,76
|
|
Total
|
18.17
|
20.77
|
66.23
|
Help-Seeking Behavior
Epilepsy patients sought treatment from different persons in their locality before
reaching our institute. We divided these helps into five broad categories, namely
(i) professional help, for example, primary health center, rural, subdivisional or district hospital, consultant
neurologist, physician or psychiatrist, general practitioner, nursing home, mental
health specialty, and health clinics run by nongovernmental organization; (ii) nonprofessional medical help, for example, local medical practitioner(not formally trained), and faith healer like
gunin or ojha; (iii) religious remedies, for example, healing temple, dargah, priest or maulavi, and astrologer; (iv) alternative medicines, for example, homeopath, kabiraj, Ayurveda, Unani, and local herbal leader; and (v)
others, for example, yoga, physical exercise, and meditation.
The median number of consultations sought by families of patients with epilepsy before
reaching the tertiary care center was 3 (range: 1–15). About 80% of the patients sought
professional medical help as their first help in preference to nonprofessional help
(20%). [Table 3] shows the help-seeking pattern of the families of persons with epileptic disorders.
Table 3
Patterns of help sought by patients having different perceptions about cause of epilepsy
|
Types of help sought
|
Perception of causes of epilepsy (%)
|
|
Bodily pathology
|
Habits and practices
|
Psychological
|
Supernatural
|
|
Male
|
Female
|
Male
|
Female
|
Male
|
Female
|
Male
|
Female
|
|
Professional medical help
|
87.67
|
76.27
|
19.17
|
8.47
|
30.13
|
55.93
|
63.01
|
47.45
|
|
Nonprofessional medical help
|
16.43
|
15.25
|
2.73
|
1.69
|
6.84
|
11.86
|
15.06
|
16.94
|
|
Religious remedies
|
8.21
|
6.66
|
2.73
|
3.38
|
4.10
|
5.08
|
6.84
|
8.47
|
|
Alternative medicine
|
8.21
|
13.55
|
2.73
|
1.69
|
1.36
|
6.77
|
6.84
|
13.55
|
|
Others
|
0
|
0
|
0
|
0
|
0
|
0
|
0
|
0
|
It has been observed that female respondents sought a greater number of helps in comparison
to male. Professional help-seeking is almost equal in both. Interestingly, female
respondents were much more interested to visit nonprofessional than male (9.25 vs.
0.75). The similar picture has been observed in religious (1.75 vs. 0) and alternative
medicine (2.5 vs. 0.25). None has sought “other” group of help.
Individual patient did not decide on their own about their help-seeking. Family played
an important role in decision making. In most cases father, elder brother in the family
or in some cases the neighbor took the decision. Before reaching to modern medical
facilities, the female respondents spent 2.5 years on average in seeking help from
other than professional help. In case of male, it was 1.7 years. Cost of treatment
was another important issue. In nonprofessional, religious help, the patient expended
between 50 to 500 rupees, while in professional help-seeking, it varied between 500
and 50,000 rupees.
From the [Table 3], it is evident that those who sought professional help, 87.67% of male and 76.27%
of female had bodily pathology as perceived cause of illness. Similarly, 19.17% of
male and 8.47% of female with thought that the disease was from habits and practices,
30.13% male and 55.93% female with thought that it was from psychological cause, and
63.01% of male and 47.45% female thought that it was from supernatural cause sought
professional help. While 16.43% male and 15.25% female of bodily pathological perception
sought nonprofessional help, 15.06% male and 16.94% female of supernatural causation
went to nonprofessional remedies. About 8.21% male and 6.77% female with bodily pathology
and 6.84% male and 8.47% female of supernatural perception sought religious help.
Very few respondents with other perception went for religious help. About 13.55% female
of bodily pathology and equal number with supernatural perception went for alternative
medicine. Patients of other perceptions seeking for other help were insignificant
in number. None of our respondents had practiced “other” help-seeking categories (yoga,
physical exercise, meditation, etc.).
Correlation of Help Sought with Perception about Cause of Epilepsy
We tried to correlate predominant perceived cause of epilepsy and help-seeking pattern
of our cohort (see [Table 4]). Female respondents with supernatural perception sought nonprofessional help (p = 0.000), religious help (p = 0.004), and help from alternative medicine personnel (ρ = 0.001). Female respondents with psychological cause as perception sought help significantly
from alternative medicine personnel (p = 0.016), from nonprofessional personnel (p = 0.023), religious people (p = 0.048), and also from professional person (p = 0.001). All other variables were insignificant. No relation was observed in male
respondents’ perception about cause of epilepsy and their different help-seeking behavior,
except in male respondents with perception in bodily pathology-seeking nonprofessional
help (p<0.001), and male with supernatural belief-seeking religious remedies (p = 0.009).
Table 4
Correlation of pattern of help sought by patients with different perceptions of cause
of epilepsy
|
Bodily pathology
|
Habits and practices
|
Psychological
|
Supernatural
|
|
Male
|
Female
|
Male
|
Female
|
Male
|
Female
|
Male
|
Female
|
|
Significance testing by chi-squared tests (χ2) and correlation analysis by Cramer’s V test (φ
c
) in parenthesis. Values with (*) are statistically significant (p<0.05)
Φ—Yoga, physical exercise, meditation.
aNo statistics are computed because professional medical help is a constant.
|
|
Professional medical help
|
a
|
0.00* (1.00)
|
a
|
0.342 (1)
|
a
|
0.001* (1)
|
a
|
0.00* (1)
|
|
Nonprofessional medical help
|
0.00*
(1.00)
|
0.00* (0.826)
|
0.570 (0.740)
|
0.324 (1)
|
0.268 (0.839)
|
0.023* (0.800)
|
0.548 (0.612)
|
0.00* (0.826)
|
|
Religious remedies
|
0.097 (0.695)
|
0.004* (0.76)
|
0.877 (0.596)
|
0.324 (1)
|
0.961 (0.529)
|
0.048* (0.771)
|
0.009* (0.882)
|
0.004* (0.768)
|
|
Alternative medicine
|
0.441 (0.594)
|
0.001* (0.796)
|
0.771 (0.655)
|
0.324 (1)
|
0.368 (0.800)
|
0.016* (0.813)
|
0.230 (0.702)
|
0.001* (0.796)
|
|
OthersΦ
|
–
|
–
|
–
|
–
|
–
|
–
|
–
|
–
|
Discussion
In this study, we attempted to explore peoples’ belief about the causes of epilepsy
and their preferred methods of help-seeking. Studies from developing as well as developed
countries have suggested that general public attribute a wide range of nonbiomedical
entities to the cause of epileptic disorders.[2]
[12] There are very few studies from India regarding perceptions about the cause of epilepsy
and subsequent help-seeking pattern.[3]
[4]
[10]
[13] Shorvon and Farmer in a landmark study observed that the key to improvements in
medical treatment lies with better understanding of patients’ cultural concepts of
epilepsy and its treatment, along with other measures.[2] Our cohort held a wide variety of beliefs regarding causation of epilepsy. We probed
with questions as the patients often tried to conceal their disease. Our patients
described different entities based on their beliefs about causes of their disease.
These included demons capturing their soul, curse of gods, and some of their neighbors
became envious and made witchcraft or black magic, etc. Some even argued in favor
of bad fortune and their misdeeds in their previous life. Many of our patients believed
in supernatural as well as psychological causes leading them to take help from traditional
healers. Interestingly, female respondents sought nonprofessional, religious, and
alternative medicine help much more than male respondents, although there was no difference
of professional help-seeking between male and female respondents. It might suggest
backwardness of women at large in the society that is an important barrier of modern
medical treatment reaching to patients with epilepsy.[6] Epilepsy being a hidden disease, the scale of the problem is by no means apparent
at either the community or national level.[5]
It has been observed that most of the patients irrespective of gender, having no formal
education, had a belief in supernatural causes. On the contrary, believers in other
causes have diverse educational status. Cost and time spent in other modalities before
professional help-seeking were significant as mentioned previously. Family and neighbors
played a key role in decision making.[14] So, individual perception, family decision, cultural belief, cost of the help, formal
education all interacted in a complex manner in decision making,
Moreover, it has been revealed in the study that a significant proportion of respondents
having focal seizure with or without secondary generalization and complex partial
seizure believed in “supernatural” causation. Respondents with generalized seizure
accepted “bodily pathology” as their causative factor. Patients with multiple seizure
types and more frequent seizures were more prone to believe in multiple causation.
Few of the believers in super natural causation had history of birth asphyxia (though
the number is very few). All these may raise concern—whether this belief system is
entirely a sociocultural product or any organic basis is there.
Regarding factors, poor knowledge, having no history of experiencing epileptic seizures,
unfavorable attitudes, and poor social support might be associated with poor help-seeking
behavior. Stigma may give rise to social isolation and poor social support that ultimately
make help-seeking difficult. Participants who have experienced another person’s seizures
might have seen different treatment options owing to frequent impact of seizures on
the physical and emotional health of those patients. Attitude had a direct relationship
with treatment-seeking behavior, particularly in rural communities, and sociocultural
attitudes continue to have a negative impact on the management of the rural epilepsy.
All these factors have a reciprocal relationship with the perception of causes of
epilepsy. These factors affect the perception that in turn influences these factors.
Our male respondents ascribed bodily pathology as the perceived cause of their illness
more than female respondents in case of psychological and supernatural cause as perceived
one female outnumbered male. In the community, biomedical concepts are much weaker
in female.[7] About 20.77% of the respondents spontaneously disclose their belief in supernatural
causes. On probing, this percentage rose to 66.23% indicating the tendency to conceal
their belief, as it was probably regarded as socially backward opinions.
All these have serious implications in the treatment of epilepsy leading to increasing
treatment gap. Although not entirely uniform, the literature supports the statement
by ILAE/IBE/WHO in their introduction to the global campaigns against epilepsy “Epilepsy
out of the Shadows,” that globally 85% of people with epilepsy are either inappropriately
treated or not treated at all.[3]
[4]
[15]
When a sufferer of epilepsy perceived it to be caused by something other than any
bodily pathology, they often seek an alternative treatment than seeking for modern
medical help. These make them vulnerable to maltreatment and they often become noncompliant
to modern medical treatment. The belief and faith about the disease and its treatment
are so engrained in the mindset of these people that they are difficult to overcome.
These myths and beliefs are considered rational by the society and they pose important
challenge for the health care provider as the disease remains untreated in a vast
population of the country.
Prevailing concepts of etiology of epilepsy are diverse and significant proportion
of our patients had unscientific concepts about it. Many of them tried to hide their
perception, which they ultimately did on probing. Except biomedical or bodily pathology,
other concepts about etiology of epilepsy had a negative impact on treatment-seeking
behavior, ultimately leading to increase the treatment gap.
To improve the treatment gap in the society, health education of the masses is extremely
warranted. Apart from false belief, other reasons for treatment gap, for example,
level of health care development, economy, distance from health care facilities and
supply of antiepileptic drugs, and a lack of prioritization, should also be dealt
with. The combination of poverty, limited medical care, and additional beliefs coalesces
to severely limit the lives of people with epilepsy. In addition to clinical interventions,
stigma-reduction interventions are important for improving the lives of people with
epilepsy.[1]
[9]
[16]
A further point for consideration concerns traditional healers. Epilepsy would appear
to offer a good basis for cooperation between biologic and traditional medicine, particularly
when neither may satisfactorily answer the needs of the patient alone. This cooperation
should also help any treatment to be more culturally relevant.
This should help to ensure that these interventions are sustainable in the long term.
In this regard, it may be appropriate to work with local or national governments in
epilepsy service provision.
Future studies are required in large sample to understand the indigenous health belief
system and how they influence help-seeking in patients with epilepsy. This has enormous
public health importance particularly for those who are involved with policy formation.
Limitations and Strength of the Study
Limitations and Strength of the Study
Our study was not without limitation. Primarily this being a hospital-based study
with small sample size, the result cannot be extrapolated in general population. Second,
we have not studied other factors pertaining to treatment gap in epilepsy, for example,
health delivery system of that particular area and availability of free of cost medicines
in primary health center. Moreover, multivariate analysis was not performed and thus
potential confounding factors were not eliminated. However, we think our result gives
an idea about prevailing perception and behavior of patient with epilepsy in the society.
