CHAPTER ONE

1.0 INTRODUCTION
1.1

Introduction

Epilepsy Support Association Uganda (ESAU) has been operating to improve the quality of lives for
People Living with Epilepsy for the last ten years (ESAU 2008). Despite this long span of operation
and the fact that it has attracted a number of clients country wide, the prevalence of epilepsy has
been a question to be answered.
ESAU was formed in 1997 at Mbarara University Teaching Hospital out of the epilepsy clinics that
were being run by the psychiatry department. It began with a mission of empowering persons with
epilepsy in Uganda so that they may come out of the shadows and it has the overall goal of building
a national voluntary organization of persons with epilepsy (Constitution of ESAU, 1997).
The Association is a fully registered NGO with the permission to operate in the whole country.
ESAU has a total of over 3000 members who receive medical care and counseling. It is a fully
fledged member of National Union of Disabled Persons of Uganda and it has networked with
organizations like Action on Disability and Development (ADD), Uganda Society for Disabled
Children (USDC), Uganda National Association of the Deaf (UNAD), Uganda National Association
of the Blind (UNAB), Uganda Parents of Children with learning Difficulties (UPACLED), National
Association of Physical Disability (UNAPD), National Union of Women with Disabilities of Uganda
(NUWODU), Mental Health Uganda (MHU), Ministry of Health (MOH), and Ministry of Gender
Labour and Social Development.
1.2

Background and context

In view of the current clientele base and desirous curiosity to know the prevalence of Persons with
Epilepsy as a way of widening the platform to advocate, informing government planners and all
stakeholders about he plight of this disability, ESAU commissioned a study to determine their
plight, explore the knowledge, attitudes and practices as well the available health services.
To meaningfully engage stakeholders, findings were anticipated to form an empirical basis for
advocacy, policy development and program interventions. In rich and developed societies, the role
of the people with epilepsy have been supported to lead an independent life unlike in the poor and
backward societies, people with epilepsy are marginalized and cannot access any development
1

opportunity for their own families and communities and yet the International Convention of Human
Rights gives special attention to marginalized groups especially to persons with epilepsy. The same
convention advocates for protection of vulnerable groups, especially those victimized by wars,
HIV/AIDS and other health hazards.
Despite the fact that in Uganda, there is a remarkable collective effort by the Government and Non
Governmental Organisations to address these concerns through development policies, laws and
involvement of persons with epilepsy at all levels (Disability Act, 2006), there has been and still there
is a big gap on statistical data to determine the magnitude of the problem concerning persons with
epilepsy. The notion of treating people with epilepsy, as recipients of charity or neglect needs to be
changed, and it should be put in reality that the people with Epilepsy are equal partners, with equal
rights and responsibilities. It is gratifying to note that ESAU has been fighting against this fallacy
since its inception, and significant impact is already felt.
Therefore the survey was done to explore the prevalence on epilepsy focusing on knowledge,
attitudes and practices towards persons with epilepsy, establish the nature of services and document
useful information available, as a basis to empower PWE like in developed societies, where the roles
of the people with epilepsy have been supported to lead an independent life where they can access
any development opportunity for their own families and communities without marginalization.
It is worthy noting that in Uganda, there is a remarkable collective effort by the Government and
NGOs to address person with epilepsy concerns through development policies, laws and their
involvement at all local governments. However despite that, there are still many gaps in the
knowledge, information and statistical data to determine the magnitude of the problem of persons
with epilepsy.
1.3

Objectives and scope of the Baseline Survey

The major objective of the baseline survey was to assess the knowledge and attitudes and practices
towards the people with epilepsy (PWE) as well as establish the prevalence of Epilepsy in the
selected study districts namely Mukono, Bushenyi and Soroti. The specific objectives of the baseline
survey were therefore the following:

To report on the knowledge, attitudes and practices towards persons with Epilepsy in
the Community.
2

1.4

To determine the prevalence of epilepsy in selected study areas.

To find out the nature of services available for PWE in the study areas.

To document any other useful information that may help to improve services for PWE.

To stimulate further interest in research about the plight of people with epilepsy.

Survey Instruments and Materials

The research used household / individual questionnaire covering the following areas.
(a) Demographic and Socio Economic status.
(b) Knowledge and attitude to people living .with Epilepsy.
(c) Social Services available for people living with Epilepsy.
(d) Administering questionnaires.
(e) Focused Group Discussions.
(f) On spot visits/observations to ensure collection of qualitative information from key
respondents.
(g) Rapid assessment
(h) Key respondent questionnaires.
1.5

Human Resources Implication

The survey was carried out by 3 Research Supervisors in each District, 9 Research Assistants, one
team leader and data manager/statistician.
questionnaire administration.

The data analyst was to ensure completeness of

The research assistants were trained on how to administer the

questionnaire and appropriate probing techniques, Key informants interviews and Focused Group
Discussions on how they should be conducted.

CHAPTER TWO
2.0 METHODOLOGY

2. I

Introduction

The chapter describes the framework and methodology adopted by the consultant. It introduces
design, the scope, population and an overall survey execution methodology. It introduces the
various tools and methods used during the preparatory activities including needs assessment,
selection of research assistants, preparation of the training and research materials, training of
research assistants and community entry strategies. The limitation, challenges experienced and
ethical considerations throughout the baseline survey are also presented and how they impacted on
the research.
2.2

The Scope of the Survey

The survey focused on undertaking a comprehensive baseline research. A representative statistical

scope was considered where the survey concentrated in three districts that is Soroti, Mukono and
Bushenyi. The study was designed to cover 900 respondents 300 respondents for each of the
districts. However for Soroti 299 respondents were covered, for Mukono 296 and for Bushenyi 279.
Altogether 874 respondents were covered:-

2.3

Survey design

A mixed design was utilized by employing both qualitative and quantitative techniques of data
collection and management. Specifically, a descriptive Statistical survey was employed and it
involved administering of questionnaires, Focus Group discussion and key informant interviews.

The scope is represented in Figure 1. below:MapofUgandashowingtheselecteddistricts

299
Respondents

279
Respondents

296
Respondents

2.3.1: Community Entry Strategy:

In order to smoothly access the target communities, we had to rely first on the connections of
ESAU where the National Director of ESAU either called or wrote letters of introduction to the
following categories of stakeholders. These included:

The District Chairpersons

The district community development officers.

The local councils

ESAU community volunteers

NUDIPU Mukono offices

The letters introduced the mapping team to the different community levels, the objectives of the
survey and the expected roles of the respective stakeholders.
5

2.3.2: Survey Area

The survey population was cross cutting from the community living in rural to the urban
communities of Uganda and particular consideration of people living with epilepsy. A three stage
stratified Cluster - sampling techniques (design) in which the regions were the strata, the districts
were selected by simple random sampling as first -stage units, parishes were selected by systematic
random sampling as a second stage units and household also selected systematically as the third
stage units.
Purposive sampling was applied to select Bushenyi and Soroti districts where ESAU operated in
Uganda. In addition, Mukono district where ESAU does not operate was selected purposively. The
household within the three districts selected provided the sampling units. Altogether 900 households
(300 for each district) were targeted in the survey but after data collection the number fell to 874.
The key informants were purposively selected after systematic random sampling of the parishes.
Complete lists of villages and their populations were obtained from the Population Office of the
district and Uganda Bureau of Statistics. A sampling interval determined and based on the sample
size was set and parishes to be sampled were systematically selected at every identified interval of the
population. A cluster of households was then randomly selected from each of the parishes chosen.
Table 2.1:

No.

Survey Area

District

1.

Mukono

2.

Bushenyi

3.

Soroti

2.3.3

Sub county

Parishes

Kyampisi
Nkokonjeru
Mukono T.C
Kakanju
Burere
Shuuku
Arapai
Atiira
Eastern Division.

Bulijjo ntoto
Bukasa
Gulu ward
Mazinga -Namumira
Swanjere
Kyempitsi
Arapai, Odudui, Aloet
Atiira
Akisim Ward, Moru Apesur

Sample size and Population

The sample size was computed from estimates at the Parishes which were aggregated into districts
and subsequently the national sample size. A total of 874 households were identified and individuals
from these households targeted to be interviewed. Altogether 3 regions in Uganda, 3 Districts, 3
Sub-counties and 1 Municipality, 12 parishes and all the villages in the selected parishes were
6

covered in this survey. The sampling size was computed mathematically but was highly dependent
on many factors such as available finances and human resources. In the selected districts, 20
(twenty) households were targeted in each parish and five households from each village. In each
household, one person especially the household head was interviewed.
2.3.4: Sample selection
The sample selection used was the multistage stratified Cluster - sampling techniques (design) in
which the regions were the strata. The districts were selected by simple random sampling as first stage units, sub counties were systematically sampled as second stage units, parishes selected by
systematic random sampling as third stage units, the villages systematically selected as the fourth
stage units and households also selected systematically as the fifth stage units.
In addition, key informants were also purposively selected to provide additional information. They
included officials in key offices with a bearing on PWEs i.e. Community Development Officers in
charge of Persons with Disabilities (PWDs), Health officers especially from the Mental Health Units,
Labour officers, and Trade officers. Complete lists of villages and their populations were obtained
from the Population Offices of the districts and relevant UBOS publications were also acquired and
reviewed. A sampling interval was selected based on the sample size. Parishes to be sampled were
systematically selected at every identified interval of the population. A cluster of households were
then randomly selected from each of the parishes chosen.
2.3.5: Data Collection Tools

2.3.5.1: Personal interview schedule

A personal interview schedule was constructed and administered to gather quantitative data from
survey respondents. Africa Mentoring Institute with the help of a team leader, one overall
statistician, three district research supervisors and nine research assistants personally administered
the tool. This was to ensure that all questions are answered.

2.3.5.2:Key Informant Interview schedule

The selection of key informants took into consideration the fact that the selected respondents were
more knowledgeable in issues relating to PWE. Specific consideration was given to their positions of
responsibility. As such, the district health officers, chairpersons of disabled unions in the districts,
7

heads of health care facilities, Education managers and District Chairpersons and Secretaries for
health and ESAU personnel among others were considered.

2.3.5.3: Focus group discussion (FGDs)

During the mainstream discussion sessions, the researcher played the role of a moderator and
encouraged as much as possible equitable participation by all stakeholders present while also keeping
the discussion focused towards the achievement of the objectives of the survey. Throughout the
discussion, the records of issues discussed were captured using the traditional rapportuering
techniques. Discussants included District Community Development Officers, Psychiatric Officers
District Councilors for Persons with Disability, Rehabilitation Officers and PWE.

2.3.5.4:Documentary review
The raw information obtained through primary data collection methods was supplemented with
information from documentary sources. The sources included among others HMIS reports,
Ministry of Health reports, National health policy and the Health Sector Strategic Plan.
2.3.6

Method/Tools used

Several participatory methods/tools were employed to capture data about the prevalence of epilepsy.
The methods were selected according to the suitability to capture various variables in line with
epilepsy survey objectives. These included knowledge, attitudes, practices, perceptions,
demographic factors, social and economic status, education, social services availability, community
response views and impact on Persons with Epilepsy.
2.3.7

The Consultancy and Survey Process

In order to accomplish the consultancy in the stipulated period of time, the researcher developed a
work frame to be involved. The following were the processes:2.3.7.1: Consultative meetings:
These were undertaken at two levels:i.

Consultancy team meetings, whose aim was to identify the desired outcomes by the client,
developing, assembling survey tools to carry out a well documented and authentic data
collection.

ii.

Stakeholders meetings to introduce the consultancy activities and to generate views on how
best to work with the community.
8

2.3.7.2: Approval of the consultancy:

The consultancy was approved by Epilepsy Support Association Uganda. Below are some of the
photos which show some of the meetings:-

A meeting with donors, the

National Director of ESAU
and the donors.

Some of the early lobbying

meetings with other
stakeholders

2.3.8

The subsequent activities

These included preparation of data collection tools, materials, training of data collectors, field
work/data collection, analyzing the connection between the field data and the secondary data and
what was got from the focused group discussions and the rapid assessments.
2.4

Data Analysis

The qualitative data obtained from key informants was analysed thematically but this was in line with
the survey objectives. The quantitative data was captured using EPIDATA and the analysis was
done using Statistical package for social scientists (SPSS). Analysis of the data was done in two
stages namely Univariate and Bivariate. The former involved running simple frequencies of the
different categories of the background characteristics to get the distribution of the respondents
across them. The latter was done using the contingency tables and cross tabulations, in order to test
9

whether the independent variables have any statistical association with the dependent factors. This
analyzed data was summarized into a draft report for presentation to ESAU.

2.5

Limitation of the Study

There was a limitation of inadequate resources to cover a wide range of districts and target
group which led to sampling based on the available resources and man power. Further the
situation was complicated more by the political crisis in the neighboring Kenya which led
fuel and other scholastic materials prices to skyrocket.

There may be a limitation that the study could not medically identify all the different types of
epilepsy which may lead to leave a certain percentage un recognized.

There was little available literature and information concerning epilepsy in Uganda as a basis
for analysis.

Much as emphasis was taken to explain the objectives of the survey and the assurance of
confidentiality to the information given before their actual participation, some respondents
could hesitate to answer some questions asked.

Time provided to collect data was also limited in comparison to the amount of information
required and the area to be covered.

Lack of a number of research requirements gadgets to enable a complete capture of salient

information for example a digital camera to take pictures of activities, GPS for geospatial
presentation and others for health facts.

2.6

Ethical Considerations

In line with the ethical requirements of the survey, all the respondents participation was voluntary.
Further, the design of the data collection tools was made in such a way that confidentiality was
guaranteed and that ones participation could not pose any danger to any respondent either directly
or indirectly. As a procedural issue, the Consultant in close collaboration with ESAU sought and
obtained permission from all the relevant authorities before conducting the interviews.

10

CHAPTER THREE
3.0 PRESENTATION OF SOCIAL DEMOGRAPHIC CHARACTERISTICS OF
RESPONDENTS
3.1

Introduction

This section presents the details of the findings from the tools that were used in this baseline survey.
It is definitive only to the extent of the scope of the baseline survey which includes Bushenyi,
Mukono and Soroti Districts. It specifically covers the demographic information and socio
economic status of all respondents.
3.2

Demographic information and Socio Economic Status

3.2.1: Sex of Respondents

The distribution of respondents sex is shown in the table 2.1 below.

Table 3.2.1:

Distribution of Respondents by Districts and Sex

Districts

Female(N=405)

Males(N=469)

Total (N=874)

Bushenyi

27.7 %

35.6 %

32.0 %

Mukono

38 %

30.3 %

34.0%

Soroti

34.3 %

34.1 %

34.0 %

More males were sampled from both Bushenyi and Soroti, this was probably because, males are
most likely to be the house hold heads. However, in Mukono district, slightly more females were
selected. All together, 53% (469 males) were interviewed compared to 46.3% (405) females. Overall,
a total of 874 respondents were sampled from the three districts surveyed.
Graph1:PIECHARTSHOWINGTHEDISTRIBUTIONOFRESPONDENTS
BYDISTRICTS

BUSHENYI,279
(31.9%)

SOROTI,299
(34.2%)
MUKONO,296
(33.9%)

11

Graph 1. Shows a high response rate in all three districts, and as implied in Table 1, there is generally
inclusion of more males (54%) than females (46%) respondents in the baseline survey. This
however, is manifested in both Bushenyi and Soroti, but not Mukono. In Soroti district, females
constituted 46% and males 54% Bushenyi district females constituted 40% and males 60%
Mukono district females constituted 52% and males 48% of respondents.

3.2.2. Age distribution of respondents.

GRAPH2:DISTRIBUTIONOFRESPONDENTSBYAGEGROUP

No.Of
Respondents

250
200
150

228

100

241
150

48

50

107

35
54

89

79

80

70

69

59

60

49

50

40

39

29

30

20

19

10

0
9

Agegroup

The graph above shows the distribution of the age of respondents from all the surveyed districts. A
statistical computation revealed that median age of respondents is 36 mean age is 38.79 while the
modal age was 29. The standard deviation is at 15.21. This presentation aims to provide an insight
into the characteristics of the respondents age distribution in order to relate the prevalence to the
most affected age group. Even in regards to the social responsibility it is important to determine the
extent to which the prevalence affects the population by their age distribution.

3.2.3: Highest Education attained by Respondents

All respondents were asked to state their highest level of education and below is a reflection of their
education levels. It must be noted that there was no means of verification but rather the data
collectors simply captured the respondents answers.

Table 3.2.2:

Highest Level of Education attained by survey Respondents

Education Level

Bushenyi (N=279)

Districts
Mukono(N=296)

Soroti(N=299)

Total(N=874)

Not Educated
Primary
Ordinary level
Advanced level
Tertiary Institution
University
Others

17.2 %
55.6%
18.6%
1.8%
5,4 %
1.0%
1.0%

16.0%
38.9%
30.7%
6.1%
5.4%
2.0%
1.0%

10.4 %
40.8%
28.1%
6.7%
12.0%
2.0%
0.0%

14.5%
44.9%
26.0%
5.0%
7.7%
1.6%
0.5%

12

Important to note, is that almost half of all the respondents from the three districts had their highest
level of education at primary level, while only few respondents had their levels further than Ordinary
level of education. Mukono districts an urban setting, had almost the same educational levels as
Bushenyi and Soroti districts. Table 3.2.3 shows that in all 3 districts covered in the baseline survey,
more respondents had primary level education as opposed to secondary, tertiary, university and
other education levels. 45% of the respondents included in the survey were educated up to primary
level, 26% ordinary level, 5.0% advanced level, 7.7% tertiary, 1.6% university and 0.5% other
education levels.

In general, the findings show that there is a significant difference between the levels of education
with respect to knowledge and perception about epilepsy. The education level attained is seen to an
influence on the knowledge and perceptions about epilepsy. The more educated the respondent, the
greater the knowledge and perceptions about epilepsy in the districts covered in the survey.

Table3.2.3:NumberofChildrenwithEpilepsywhogotoSchoolintheDistricts(N=130)
NumberofChildren
District
BUSHENYI
MUKONO SOROTI TOTAL
1
5.4%
26.2%
47.7%
79.3%
2
3.8%
3.1%
3.1%
10%
3
1.5%
0.8%
1.5%
3.8%
4
0.8%
0.7%
2.3%
3.8%
5
0%
0.8%
0%
0.8%
6
0.8%
1.5%
0%
2.3%
Total
12.3%
33.1%
54.6%
100%

From the above tables the findings give comparisons on how many people know persons who either
go to school. It can be stated that the burden of going to school is affected by the level of drop out.
Yet it can be clearly stated that education level attained has an influence on the knowledge and
perceptions about epilepsy. The most interesting scenario here is that in Bushenyi out of 279
Individuals only 16 knows a child with epilepsy going to school, Mukono only 43 out of 296 and
Soroti 71 out of 299.

13

3.2.4: Marital Status of survey respondents

Table 3.2.4:

Marital Status of the Respondents per districts Surveyed

Marital Status

Districts
Bushenyi(N=279)

Mukono(N=296

Soroti(N=299)

Total(N=874)

Single

17.2 %

17.6 %

20.7%

18.5 %

Married

75.0 %

61.5 %

69.2%

68.4 %

Widow/Widower

6.1%

10.8 %

4.7 %

7.2 %

Divorced/Separated

1.8 %

7.8 %

0.0%

4.8 %

Others

0.2 %

0.2%

No response

0.6 %

0.2 %

0.8 %

The findings show that 68.4% of respondents interviewed were married, 18.5% single, 7.2%
widowed and 5% are divorces. The 4.8% of the divorces is a higher percentage to consider also.

3.2.5: Religion of Survey respondents

Table 3.2.5:

Religion of the Respondents per districts Surveyed

Religion

Districts
Bushenyi(N=279)

Mukono(N=296)

Soroti(N=299)

Total(N=874)

Catholics

25.8 %

30.4 %

39.8 %

32.2%

Protestant

62.0%

27.4%

41.8 %

43.4%

Muslim

6.1%

26.4%

3.3 %

12.0%

Pentecostal

3.9 %

7.4 %

11.7 %

7.8%

SDA

1.4 %

1.4 %

2.0%

1.6%

Others

0.7 %

7.1%

2.0%

3.3%

Deliberate efforts were taken to establish the respondents religious affiliation. Table 3.2.5 below
shows that the majority in Bushenyi 62% (173) and Soroti 41% (125) were Protestants while in
Mukono majority were Catholics 30.4% (90). However, Soroti has the majority of Catholics. Overall,
the dominant religion of survey respondents is protestant. However, the category of other includes
all other religions and those who stated that had given up believing since God was not responding to
their cries.

3.2.6: Main Occupation of Household head

All respondents were asked to state the main occupation of the household head. A significant
majority (395) of the respondents are involved in agriculture. Below is table to give an illustration.

14

Table 3.2.6:

Occupation of Household Head of the respondents by Districts

Occupation

Districts
Bushenyi(N=279)

Mukono(N=296)

Soroti(N=299)

Total(N=874)

Farmer

60.6 %

29.7 %

46.0%

45.1 %

Business

8.2 %

4.1 %

11.7 %

8.0 %

Teacher

3.2 %

7.1 %

9.5 %

6.6 %

Unemployed

2. 2 %

10.1 %

4.0 %

5.5%

Casual Laborers

3.2 %

3.7 %

1.3 %

2.7 %

Builder

3.2 %

1.1 %

0.7 %

2.4 %

Petty Traders

0.4 %

1.7 %

0.7 %

2.1 %

Civil servants

0.4 %

0.3 %

4.7 %

1.8 %

Drivers

0.4 %

2.4 %

1.7 %

1.5 %

Bodaboda

1.4 %

2.0 %

0.7 %

1.4 %

Others

16.8 %

32.1 %

19.1 %

22.8 %

Table 3.2.6 shows that majority of respondents are subsistence farmers with Soroti and Bushenyi
taking the lead. The findings show that 45% of those interviewed were farmers, 8% business people
and 5.5% unemployed. Such analysis can easily bring out a relationship between poverty and
unemployment which is affecting PWEs.

3.2.7: Size of House holds

GRAPH3.0:HOUSEHOLDSIZESOFRESPONDENTSBYDISTRICT
GRAPH3.0:HOUSEHOLDSIZESOFRESPONDENTSBYDISTRICT
BUSHENYI
BUSHENYI
140
140
120
120

No.OF
OFP'PLE
P'PLE
No.

100
100
80
80
60
60

MUKONO
MUKONO

138
138

96
96

130
130
131
131

SOROTI
SOROTI

117
117
112
112

40
40

44
44

20
20
18
18

00
15
15

610
610

27
27

1115
1115

55

8
5
5 8

1620
1620

N= 874
From the graph above, graph mean household size is 6.85 while the median is 6.
15

Key Statistical feedback :

The response rate was amazingly above 90% for all the Districts Bushenyi had a 93% response,
Mukono had 99% while Soroti had 100% response. The gender distribution is very likely to the
national statistics 46% of the respondents were females against the remaining males. The median
age of the respondents is 36 and the Modal age is 29 with the majority of them educated up to
primary level (45%) and 26% are ordinary level graduates. The respondents are 68% married and
19% Single with well represented religious beliefs and 35% of the household head being farmers
while 12% are peasants.
This Baseline survey brings very interesting socio economic statistics comparative to the national
statistics especially for household size which is 6 people reflected by median and modal household
size. The source of income of the respondents is predominantly agriculture followed by petty
trade and certainly from a family based setting both extended and nucleus. Since majority of
farmers get involved in subsistence agriculture, this renders them to poverty vulnerability.

3.3

Knowledge, Attitude and Practices

3.3.1: Introduction
This section presents the knowledge, attitudes and practices of community towards PWE. It
specifically draws evidence from main survey tool and blends it with key informant and views
expressed by focus group discussants. It specifically highlights respondents understanding of
epilepsy, perception of epilepsy, perceived causes of epilepsy, community reaction to an epileptic
attack, community held views about PWE community knowledge of ESAU and lastly a key
statistical feedback is presented.
3.3.2: Respondents Understanding of Epilepsy
Survey respondents were asked whether they had heard of epilepsy. Below is table 3.3.1 reflecting
their views:Table 3.3.1:

Respondents who have ever heard of Epilepsy

Ever Heard of Epilepsy?

Yes
No
No response

Bushenyi (N=279)

Districts
Mukono(N=296)

Soroti (N=299)

Total(N=874)

95.7 %
4.0%
0.3 %

97.3%
0.7 %
2.0%

97.0 %
2.7 %
0.3 %

96.7%
2.4 %
0.9 %

16

Table 3.3.1 shows that the survey respondents in the three districts had widely heard about the
existence of the epilepsy disease. In all the three districts covered in the survey combined, 98% of
respondents have heard about epilepsy. However, hearing inversely correlates with correct
knowledge about epilepsy in the three districts. Knowledge about epilepsy is influenced by level of
education, which in turn determines the source of information concerning the condition. The
higher the level of education attained, the greater the incidence of accessing a correct source of
knowledge and information about epilepsy.

The findings further show that, despite knowing about epilepsy, there is little awareness about how
the malfunction can be contained. This is expressed in the table below:3.3.3:

Perception of epilepsy

Table 3.3.2:

The Respondents Definition of Epilepsy

What is Epilepsy?

BUSHENYI

MUKONO(N=296)

SOROTI(N=299)

Total(N=874)

(N=279)
It is a curse

7.9 %

5.1 %

5.0 %

5.9 %

It is a Medical condition

53.8 %

36.1 %

21.1 %

36.6 %

It is Witchcraft

6.8 %

9.5 %

1.3 %

5.8 %

It is a Mental condition

18.3 %

41.6 %

55.5 %

38.9 %

7.8 %

20.1 %

13.7 %

Others

13.3 %

Table 3.3.2 shows that there is statistically significant difference on correct knowledge about the
definition of epilepsy among the respondents. The spontaneous knowledge of epilepsy was sought
and the respondents exhibited varied definitions depending on geographical area. According to the
statistics, 39% of the respondents know and have had heard about epilepsy as a mental condition,
while 37% respondents know it as a medical condition. The implication of this finding is that there
is no coherent information disseminated within the different geographical locations that provide a
true operational definition of epilepsy.

As implied in Table 3.3.1, correct knowledge about epilepsy is influenced by the source of
information. Probing during the survey also revealed that despite lack of coherent information
disseminated within the three districts, the more educated respondents directly accessed correct

17

information about epilepsy from trained medical personnel in hospitals, Newspapers, media (radio),
yet the less educated relied on passive information from friends and relatives.
3.3.4: Perceived causes of epilepsy expressed opinions of respondents.
Table 3.3.3: Perceived Causes of Epilepsy according to respondents by districts
Causes

Witchcraft
Accidents
Malaria
Evil Sprit/Curse
Mental Disorder
Hereditary
Unknown
Pregnancy/Birth
Not sure
Others

Bushenyi
n(%)
4.2%
3.1%
3.2%
4.7%
3.2%
8.4%
3.5%
2.1%
11.0%
0.5%

Districts
Mukono
n(%)
6.6%
1.3%
14.4%
3.3%
6.8%
10.5%
4.0%
1.3%
6.8%
-

Soroti
n(%)
1.3%
3.2%
6.4%
1.7%
3.3%
7.9%
2.6%
3.2%
10.5%
0.6%

Total
n(%)
12.1%
7.6%
24.0%
9.7%
13.3%
26.8%
10.2%
6.5%
28.3%
1.0%

Statistics in Table 3.3.3 reveal that a majority of respondents were not sure or did not know the true
causes of epilepsy. A survey on responses revealed that 28% were not sure, 24% perceived it as
malaria, 27% perceived it as hereditary, yet 12% as witchcraft. The implication is that there is a wide
misconception about perceived cause of epilepsy within the community whereby society fails to
differentiate whether or not epilepsy is disorder or a mental condition.

According to key informants, there is a direct relationship between knowledge about the causes of
epilepsy and community response to persons with epilepsy. The greater the correct knowledge about
causes of epilepsy, the greater the incidence of community response to medical institutions such as
hospitals and health centers. In line with this revelation, one key informant noted:
The cause of epilepsy is in most cases regarded as a spirit, it is rarely thought to be a medical condition by
the society. And because people associate epilepsy with evil spirits, they do not normally refer patients to
hospitals and health units1

It is thus important to note that epilepsy is understood differently, but mostly the perceived causes
do inform the likely areas where health care services will be sought for PWEs. This is reflected in the
table 3.3.4 below.

DistrictCommunityDevelopmentOfficer/Mukono

18

3.3.5: Where the community would take PWEs for Treatment

Table 3.3.4: Where the Community would take a person with epilepsy for treatment by District
Place of Treatment

Districts
Bushenyi (N=279)

Mukono

Soroti

(N=296)

(N=299)

Total(N=874)

Govt Health Units/Hospital

65.9

76.4

82.6

75.2

Traditional Healers

17.2

11.1

31.4

10.8

Religious Institution

1.4

1.7

4.0

1.4

No Where

5.0

0.7

8.0

2.7

Dont Know

9.0

8.4

20.7

7.0

Others

0.4

0.7

1.7

0.6

No response

1.1

1.0

4.7

2.3

Statistics in table 3.3.4 shows that 75% of respondents in all three districts combined reported that
they would take a person living with epilepsy to a government Health facility, 11% to traditional
healers yet 7% would not know what to do in case of an opportunity to take them for treatment.
The fact that 75% of all respondents would take PWEs to health facilities may imply a positive
attitude towards assisting persons living with epilepsy access to medical services in the three districts.
This however, is also dependant on proper definitions and causes attached to epilepsy within
different localities. The fact that many respondents would take people living with epilepsy to a
government hospital reflects a positive attitude, but contradicts findings from key informants and
focus group discussants which are sammarised by one group discussant who noted that
Normally, society members treat epilepsy with traditional herbs. This stems from the wide held view that
epilepsy is a curse or caused by evil spirits. Moreover traditional healers claim to have a total cure2

Councilor for the Persons with Disability/ Bushenyi District.

19

3.3.6

Community Response to epileptic seizure

Table 3.3.5: Response to an epileptic seizure if it suddenly happens in the presence of the respondents by
District
Response

Districts

Total

Bushenyi(N=279)

Mukono (N=296)

Soroti(N=299)

Take the PWE to the HC

51.3 %

55.7 %

45.8 %

50.9%

Run away

16.5 %

17.9 %

5.0 %

13.0%

Report to the LCs

1.1 %

1.7 %

0.0 %

Take the PWE to a traditional Healer

11.1 %

4.7 %

1.7%

Look for their Relatives

0.4 %

4.7 %

13.7 %

Give First Aid

5.4 %

1.4 %

8.7 %

Help PWE to avoid Injury

1.1 %

2.4 %

7.0 %

Dont Know

12.2 %

9.8%

9.4%

Others

1.1 %

1.7 %

8.7

0.9%
5.7%
6.4%
5.1%
3.5%
10.4%
3.9%

According to table 3.3.5, a sudden occurrence of an epileptic seizure would provoke positive
assistance within society. If an Epileptic fit occurred in the surrounding, 51% of respondents would
rush the person with epilepsy to the health centre, while 13% of them would run away and 10.4%
would not know what to do. This further shows that society perceives epilepsy as any other health
condition that would require the victims to be assisted.
However, a comparative analysis of the responses from households 5.1% would give first aid, 3.4%
would help them avoid injury, and 13% of those that would run away reveals respectively, gives an
implication that there is less knowledge about first line assistance that should be rendered to
epileptic victims, in spite of the desire to take victims to hospital and heath units, which causes
paranoia on sudden occurrence of seizure.
3.3.7: Community held views about PWEs
Table 3.3.6:

What the Community thinks about PWE by District (Multiple Responses)

Districts

Community Perceptions

Bushenyi n(%)

Mukono n(%)

Soroti n(%)

Totals n(%)

Epilepsy is curable

55.6%

59.5%

49.5%

53.4%

PWE can Marry

62.4%

84.9%

71.9%

71.6%

PWE can be Leaders

38.4%

65.2%

62.9%

54.6%

PWE can Inherit Property

62.4%

77.85

82.3%

72.9%

Sharing Utensils with PWE does not pass

55.2%

66.7%

57.5%

58.6%

on Epilepsy

20

PWE should not operate machine

28.0%

75.3%

65.9%

55.5%

Epilepsy is Infectious

29.0%

41.6%

25.8%

31.4%

It is embarrassing to have Epilepsy

75.6%

73.1%

57.2%

67.0%

According to responses in table 3.3.6, there is a general misconception about epilepsy 53% of the
respondents believe that epilepsy is curable, while 31% believe it is infectious. The fact that epilepsy
is both not curable and infectious implies that the community is not aware of the basic facts about
epilepsy, but there is still lack of knowledge about the characteristics and spread/ transmission of
the disease. Importantly the findings in the survey reveal that 67% of the respondents generally
believe that it is embarrassing to have epilepsy. Such an attitude of embarrassment is directly related
to the enormous stigmatization directed to persons with epilepsy in society. In line with this
revelation, one key informant noted:
Epilepsy is a sensitive disease, highly stigmatized in society, and PWEs hide themselves they are also
hidden by their family members this may be probably one reason why PWEs shun away from government
facilities3.
Additionally, the community were asked to indicate what they think transmits epilepsy. Table 3.3.7
captures their responses.
3.3.8: Community perception of how Epilepsy transmitted to the others.
Table 3.3.7:

Community perception of how Epilepsy transmitted to the others.

Districts

When

Epilepsy

is

Bushenyi(N=279)

Mukono (N=296)

Soroti (N=299)

Totals (N=874)

During the seizure/fit

54.3 %

85.3 %

40.3 %

63.5 %

Casual

30.9 %

1.7 %

10.3 %

12.8 %

Sexual contact

3.7 %

0.9 %

6.5 %

3.3 %

Sharing Utensils

7.4 %

5.2 %

10.4 %

7.3 %

Dont know

2.5 %

4.3 %

15.6 %

6.9 %

Others

1.2 %

2.6 %

16.9 %

6.2 %

transmitted

Contact

with

others (not fitting)

Findings in table 3.3.7 reveal the lack of knowledge on the transmission of epilepsy as implied in table
3.3.6. Of those who believe that Epilepsy is infectious, 63.5% say it can be transmitted during
attacks/fits, 13% say through contact with Person living with epilepsy whereas 7% think it is

District Health Officer/ Mukono District

21

transmitted by sharing utensils with People living with epilepsy. Lack of knowledge on the causes of
epilepsy significantly influences the facts held about transmission of the epilepsy disorder. Society
lacks adequate knowledge about the fact that epilepsy is congenital and caused by accidents during
birth. Implicitly, this gap does influence a lot the community practices and attitudinal views towards
persons with epilepsy.
3.3.9:

Community knowledge about Epilepsy Support Association Uganda

Table 3.3.8: Respondents Knowledge about ESAU by districts

Ever Heard about

Bushenyi (N=279)

Mukono (N=296)

Soroti (N=299)

Total (N=874)

Yes

19 %

13 %

32 %

21.3 %

No

81 %

87 %

68 %

78.7 %

ESAU?

The findings shown in table 3.3.8 show that despite the intensive undertaking and contribution of
Epilepsy Support Association Uganda, it is not significantly known amongst respondents. Thus, it is
evident that people living epilepsy may not be aware where to turn for support. For those who had
heard or known ESAU, they were asked to state how they learnt about. Table 3.3.9 shows their
responses.

3.3.10: Respondents Source of Information about ESAU by Districts

Table 3.3.9: Respondents Source of Information about ESAU by Districts
Source of Information about

Districts

ESAU

Bushenyi

Mukono

Soroti

Total

Radio

37.7 %

69%

62 %

56.5 %

Radio west

20.8 %

5.9 %

Friends

6.0%

11.6 %

8.2%

8.1 %

Atiira Health Centre 3

18.6 %

9.7 %

Hospitals

3.0%

1.6

Kakanju

7.5 %

2.2 %

Mbarara

15.1 %

4.3 %

Mushanga

11.3 %

3.2 %

Schools

0.0 %

5.2 %

2.6 %

Soroti Hospitals

3.0%

1.6%

Newspaper

1.6 %

19.4%

4.3 %

22

The above table shows radio, health hospitals and one on one are the major media of information
flow to people living with epilepsy These survey findings can help ESAU to design an intervention
strategy to make sure that the public more especially people living with epilepsy get to know their
rights.
Key Statistical feedback:
Of the respondents interviewed 98% have ever heard about Epilepsy and 39% of these people
know epilepsy as a mental condition with most inclined to the districts of Soroti and Mukono
while 37% know it as a medical condition marjory inclined to Bushenyi. 21 % of the respondents
have ever had about ESAU with most them hearing about it over radio (62%) followed by health
facilities (23%).
The community perceives the causes of epilepsy as malaria (24%), hereditary (27%), witchcrafts
(12%) and 28% of them are not sure of the causes of epilepsy. 75% of Ugandans would take a
person living with epilepsy to a government health facility if they were given opportunity to take
them for treatment.
If an epileptic seizure/fit occurred in the surrounding, 49% Uganda would rush the epilepsy
patient to the health centre (44%) while sadly 12% of them would run away and yet 10% would
not know what to do.
The survey also shows that 53% of the respondents believe that epilepsy is curable, 72% agree
that people living with epilepsy can marry, 73% believe that PWE can inherit property, 59% agree
that there is nothing wrong with sharing utensils with People living with epilepsy, 67% say that it
is embarrassing to have epilepsy, and 31% say that epilepsy is infectious.
Of those who believe that epilepsy is infectious 64% say it can be transmitted during attacks/fits,
13% say through contact with Person living with epilepsy and 7% think it is transmitted by
sharing utensils with People living with epilepsy.
Implication:
Where as communities have heard about epilepsy, they hold varied views and perception about
the disease and condition. In view of their responses, it is distinctively clear that a lot of myths
surround the causes of epilepsy and averagely, they think, epilepsy cannot be clinically managed.
Others think that epilepsy is infectious and therefore, in case of a seizure, they simply run for
their safety. The implication is that a lot of misconceptions still exist amongst different members
of society.
The fact that ESAU is not widely known indicates that a lot has to be done by the Association to
help out its members. PWEs need to know the basic facts about the association and subsequently
acquire knowledge and skills on how to live decent lives.

23

3.4

Prevalence of Epilepsy in the Community.

3.4.1: Introduction
This section presents the estimated prevalence of epilepsy in the surveyed districts. Care was taken
to include an individual as having epilepsy only if that person had a positive history of convulsions
and confirmed clinically by health workers. As a requirement, those who claimed to have epilepsy
were required to adduce a medical form as a way to confirm. Subsequently, this was important to
separate persons living with epilepsy from any other people with similar related seizures
3.4.2: Prevalence of epilepsy in the Community.
In an attempt to determine the prevalence of epilepsy, the Grand Mal fits, Petit Mal and the
continuous fits type were basically considered. The reason was not to venture into other types since
they require clinical diagnosis and investigations. This was not in the reach of the consulting team
and thus, the figures stated here may reflect an underestimation of the actual prevalence but certainly
do portray a picture of the magnitude of the disorder.
Respondents were asked to state whether themselves were persons living with epilepsy and below
graph 4.0 is a reflection of their answers. As shown in the graph below, there were 25 out of 296
cases in Mukono, 25 out of 279 in Bushenyi and 10 out of 299 respondents in Soroti districts.
Although the findings show a low existence of people living with epilepsy, it is also possible that the
figures could even be higher than portrayed, given the stigma that is attached to the disease.
GRAPH4.0:RespondentwhohaveEpilepsybyDistricts
100.0%

Yes

No. OF PATIENTS

90.0%
80.0%
70.0%

91.0%

60.0%

91.6%

96.7%

No

50.0%
40.0%
30.0%
20.0%

9.0%

8.4%

10.0%

3.3%

0.0%

BUSHENYI

MUKONO

SOROTI

24

Bushenyi (N=279), Mukono (N=296) Soroti (N=299)

From the graph 4.0 above, out of the total respondents interviewed 9% (25) in Bushenyi, 8.4% (25)
in Mukono and 3.3% Soroti (10). This implies that there is relatively a higher prevalence among the
sampled population. The average prevalence rate in the sampled population is 6.9%.
GRAPH5.0:RespondentswithrelativeswhohaveEpilepsybyDistricts
80.0%

Don't Know

No. OF P'PLE

70.0%

73.8%

60.0%

Yes

67.3%

50.0%

57.5% No

40.0%
30.0%
20.0%
10.0%

23.7%
2.5%

28.0%
4.7%

BUSHENYI

MUKONO

36.8%
5.7%

0.0%

SOROTI

Bushenyi (N=279), Mukono (N=296) Soroti (N=299)

The graph 5.0 has an interesting comparison to make based on the increasing percentage and
number of people who have relatives with epilepsy. It presents a burden caused by epilepsy though
it does not necessarily bring out the prevalence since many respondents could be related to the same
person living with epilepsy.
Table 3.4.1: How long have you lived with Epilepsy

Period taken living

with Epilepsy

District
Bushenyi (N=25)

Mukono (N=25)

Soroti (N=10)

Total (N=60)

6 months

8%

0%

10 %

5%

1 Year

4%

4%

10 %

5%

2 Years

4%

4%

10 %

5%

3-5 Yrs

24 %

8%

10 %

15 %

>5 Yrs

60 %

84 %

60 %

70 %

When respondents were asked about how long they had lived with epilepsy, it was found out in table
3.4.1 that 70% of respondents had spent more than 5 years with the disease. This when related to
findings in Table 3.3.3 about the lack of knowledge of the causes of epilepsy and the stigma attached
to it would imply that many of these 70% respondents do not access appropriate medical assistance.
It is due to the stigmatization of people affected that they do not come out open to declare their
25

status within society. Many of these PWEs have expressed these finding both in their advice to
ESAU and also in FGDs especially in Soroti and Bushenyi.
Akello Grace who is now 30 years from Soroti said, I am tired of this disease, if you could treat me and get cured I will
be very happy and in Bushenyi ,one young lady with epilepsy who was locked in the house by her Parents for fear of being
ashamed of the associated that they have an epileptic case in their home for over 15 years now, the lady was pleading for cure4

Table 3.4.2: Number of boys living in the village with Epilepsy that the respondents know of by District

Number of boys with

District

Epilepsy

Bushenyi (N=66))

Mukono (N=83)

Soroti (N=110))

TOTAL(N=256)

1
2
3
4
5
8
10

58 %
18.6 %
9.3 %
2.3 %
7.0 %
2.3 %
2.3 %

75.4 %
21.1 %
1.8 %
0.0 %
1.8 %
0.0 %
0.0 %

75 %
15 %
5.0 %
5.0 %
0.0 %
0.0 %
0.0 %

71.0%
18 %
5%
3.0 %
2.0 %
0.5%
0.5%

Table 3.4.2 show that 71% of the respondents say that they know of at least one boy in the village
living with epilepsy whereas 0.5% knows 10 people who live with epilepsy. What these Statistics
reveal is that at least most villages have a case of epilepsy in Uganda and that just like any other
diseases, it is deep in the heart of the community. In comparison with table 3.4.3, 76.5% know at
least girl living with epiplepsy. The statistics derive a conclusion that there may be more girls
affected with epilepsy than boys.
Table 3.4.3: Number of girls in the village living with Epilepsy who the respondents know by District

Number of girls with

District

Epilepsy

BUSHENYI

MUKONO

SOROTI

TOTAL(N=149 )

1
2
3
4
5and above

11.4 %
3.4 %
2.0 %
0%
1.3 %

24.8 %
4.7 %
2.0 %
0%
0%

40.3 %
6.7 %
0.7 %
1.3 %
1.3 %

76.5 %
14.8 %
4.7 %
1.3 %
2.7 %

Total

18.1 %

31.5 %

50.3 %

100 %

In table 3.4.3, attempted to isolate the burden of epilepsy by gender, and it was very clear that out of
149 respondents who know a girl or more living with a epilepsy in their villages 76.5% at least new
one and the rest know 2 or more.

ViewsfromthefocuseddiscussionsinSoritiandBusheny.

26

3.4.3

Education services

Table: 3.4.4: Number of Children with Epilepsy who have dropped from School by District
Number of Children
District
BUSHENYI
MUKONO
SOROTI
TOTAL(N=140)
1
12.8 %
24.3 %
38.6 %
75.7 %
2
1.4 %
0.7 %
8.6 %
10.7 %
3
2.9 %
0%
2.9 %
5.7 %
4
1.4 %
0.7 %
1.4 %
3.6 %
5
0%
0%
1.4 %
1.4 %
6
1.4 %
1.4 %
0%
2.9%
Total
20 %
27.1 %
52.9 %
100 %

From table above, it can thus be concluded that the education system remains significantly
insensitive to the needs of children with epilepsy. This is absurd as it denies these children an
opportunity to stay in school. Not surprising, survey results indicate that 76% of the respondents
were aware of high level of school dropped out of school of children living with epilepsy.
Table 3.4.4 clearly explains why majority of PWEs are primary and other lower levels (refer table
3.2.3). Of particular interest, despite the 76% awareness of children who drop out of school, 79% of
all survey respondents were aware of a child who had epilepsy but was still in school. This basically
implies that much as the school system is not sensitive to the various needs of pupils with epilepsy,
their parents and relatives still value them and are willing to send them to school.
In all the surveyed districts, Education managers interviewed as key informants observed that
inclusive education caters for every one in the school system. However, a detailed a review of
inclusion education and the current practices in the system leaves a lot to be desired. In all the three
districts, conclusions were made that the school system are poorly prepared to take on the children
with epilepsy. In Bushenyi, the District male councilor for PWDs observed:
In this district, there is no school that can ably handle and respond to the need of children with epilepsy, I
witnessed a case where the head teacher simply ran away from a convulsing child.. There is a lot of
stigmatization and ridicule from both the school management and the pupils, aspects that make it so
conducive for children with epilepsy to dropout from school5
From the table above, it can thus be concluded that the education system remains significantly
insensitive to the needs of children with epilepsy. This is absurd as it denies them an opportunity to
stay in school.

BushenyiDistrictMaleCouncilorcommentsonhowpeoplelivingwithEpilepsyaretreated.

27

Apparently, this is an issue which needs to be appropriately addressed basing on the inherent
challenges within the school system to give children living with epilepsy equal opportunity to attend
school since findings reported (Jacob A, Snape. D, Baker. G, 2005) Lancet, The British Medical
Journal, does indicate that epileptic children have the same IQ range as the same with the general
population.
3.4.4: Women and Men living with Persons with Epilepsy
Table 3.4.5: Number of women and men living in the respondents village with Epilepsy by District

Number of women and

men with epilepsy

BUSHENYI
Men
Women

District
MUKONO
Men Women

SOROTI
Men Women

TOTAL
Men Women

1
2
3
4
5
6
7

43
7
1
1
1
0
0

17
0
1
0
2
0
1

24
7
1
2
1
0
0

45
5
3
1
0
0
0

43
12
4
1
0
0
0

26
4
1
0
0
1
0

110
26
6
4
2
0
0

88
0
5
1
2
1
1

Total

53

21

35

54

60

32

148

98

Statistics in table 3.4.5 show that in total there are more males than females living in villages that have
persons with epilepsy. There is a possibility that these figures are not conclusive, because many
females fear to declare their positive status to the disease, as they suffer more the burden of stigma
compared to the males. Moreover, there is limited record taking about the exact numbers of epilepsy
patients in the districts covered in the baseline.
Limited data collection and gathering has an influence on not only client monitoring, but also the
services rendered to epilepsy patients. In Bushenyi and Soroti, for instance, the government cannot
provide basic medical supplies to health centers because planning cannot be done for a number of
clients not known. However, this survey did not establish whether the lack of data is purely
responsible for the regular un availability of drugs.
Key statistical feedback:
Prevalence of generalized epilepsy in the surveyed districts Bushenyi has 9%, Mukono 8.4% and
Soroti 3.3%. The average prevalence is 6.9%. These statistics reflect a lower prevalence than that
one of the research carried out in 1996 in North Western region of Central African Republic in
the Ngaoundaye Sub-prefecture which registered 10.6% (African Journal of Neurological Science,
2002). This is also in line with the same Journal quotes of countries like Gambia, Liberia, Togo,
Madagascar, Western Uganda and Nigeria, which have an average prevalence of 10% per 1,000.
However, in comparison with other countries like the United States which is 4.7%, Thailand
7.2%, Rural Bolivia 12.3%, Benin 15.9% there may be an under estimation since the other forms
of epilepsy were not catered for.
28

3.5:

Services available for people living with Epilepsy

3.5.1: Introduction
This section presents details of social services available to PWE. It basically highlights the available
health care services, education services, and social support systems for PWE. In the presentation of
these sectors, qualitative judgments are made and inherently the challenges are highlighted. This
information was gathered to inform future ESAUs pragmatic interventions.
3.5.2: Health care services
The researchers deliberately sought to secure information about the nature, organization, quality and
infrastructure of the formal health care system. This included both the private and government
health care facilities.
3.5.3: Organization and delivery for care of PWEs
When asked where PWE go for treatment and care, majority of the respondents were of the opinion
that they should visit health centres as indicated in the table 3.5.1 below:
Table 3.5.1: Where the Community thinks Services for PWEs can be accessed
Districts
Community Perceptions
Traditional Healers
Health Centres
Witch Doctors
Churches
Mosques
Dont Know
Others
No response

BUSHENYI
7.7%
20.0%
1.7%
0.3%
0.1%
1.7%
0.3%
-

MUKONO

SOROTI

8.9%
13.75
3.1%
2.6%
0.3%
3.0%
0.3%
1.8%

1.4%
27.3%
1.0%
1.5%
0.1%
1.75
0.8%
0.3%

Totals (N=874)
18.0%
61.1%
5.8%
4.5%
0.5 %
6.4%
1.5%
2.2%

From the table above 61% of the respondents agreed that PWEs would access services from the
health centres. Much as they mentioned as an option to seek care and treatment, key informants
from the three districts decried the unavailability of drugs in government facilities. This explains why
there is a great percentage of PWEs going to traditional healers (18%), witchdoctors (5.8%) and
churches (4.5%) as a desperate means of survival. Similarly, people living with epilepsy in Soroti
District had the same opinion and expressed their total disappointment particularly with government
facilities where drugs are almost unavailable and yet they are supposed to take drugs throughout the
year. One informant from Bushenyi summarized all by saying that
29

Person with epilepsy must visit health centre regularly for medication, but one challenge is the availability of
drugs6.
It is therefore apparent that the community as well as the health officials have confidence in health
care system but are concerned about the supply of drugs for PWE. In Bushenyi district, A non
profit private Health centre III (Mushanga) that runs an outreach mental health clinic specifically
targeting epileptic cases reviews more than 120 cases on a single day once in a month. Asked why
they receive more clients, the in charge had this to say:
The turn up of clients is overwhelming because we have antiepileptic drugs and this is supported by the regular
health sensitization in the villages. However, we have several challenges of manpower7.
In comparative analysis with the OPD attendance at Kitagata Hospital (refer to appendix 6.), the
attendance creates an impression that the cases are fewer since less PWE turn up for clinical
assessment and management. The significant difference can be explained by what focus group
discussant in Soroti considered as the unavailability of antiepileptic drugs as an influencing factors
for health seeking behavior in health facilities.
Kitagata hospital is based in a rural area in Bushenyi whereas ESAU had not yet carried out its
mobilization. On the other hand, Mushanga hospital is accessible where by it is situated on a
highway 25 km from Mbarara hospital. With the support of ESAU and Mbarara hospital, it was
expressed that drugs are more regularly available and thus a driving factor for the regular high turn
of PWEs. Conclusively, availability of drugs in tandem with community re-education about the
management of PWEs has a direct bearing on the health seeking behavior.
According to the attendance list got at Kitagata health centre (see Appendix 6), its apparently clear
that in a government health facility, the OPD attendance is irregular with some months having fewer
cases reporting. A comparison of OPD attendance of Kitagata hospital and Mushanga health centre
III reflects the fact that more PWEs do not receive modern treatment. This concurs with
observation by World Health Organisation, (2005) that 80% of PWEs do not receive modern
treatment and may not even be identified.

District Health Officer, Bushenyi.

Incharge, Muhanga Health centre.

30

Typically, the case of Mushanga health center III indicates that with regular availability of drugs and
community sensitization, the response from the community is high. Thus, the frustration of
unavailability of drugs may thus be held as a deterring factor from consumption of formal health
care services and conversely, the availability of free drugs for the PWEs influences the pattern of
health seeking behavior. Worth noting is the strategy employed by Mushanga Health centre III of
organizing regular monthly outreach visits in rural Ugandan communities. However, this is not to
exclude other factors that influence health care seeking behavior.

3.5.4: Clinical Visits by PWEs for Treatment and Care

Further, respondents were asked to comment on the regularity of visiting the health care facilities
for drugs, below is Table 3.5.2 depicting their responses. Strikingly, respondents are certainly aware
that PWE must visit health care facilities regularly. A minority section is not aware and some do
believe that it can be annually.

Table 3.5.2:

How often PWE should go to Clinic for Anti-Epileptic Drugs

Frequency of the Clinic

Attendances
Daily
Weekly
After 2 weeks
Monthly
After 3 month
Yearly
Dont know

Bushenyi (N=279)
5.0 %
8.6 %
4.7 %
29.7 %
10.1 %
0.7 %
50.2 %

Mukono(N=296) Soroti(N=299) Total(N=874)

1.4 %
6.4 %
6.4 %
41.9 %
4.8 %
0.0 %
43.2 %

1.0 %
14.7 %
9.4 %
29.4 %
17.0 %
0.0 %
43.8 %

2.4 %
10.0 %
6.9 %
33.9 %
29.6 %
0.2 %
45.7 %

The survey further show that, despite people living with epilepsys willingness to visit the clinics
45.7% dont know when to visit the clinics which can put then in a very dangerous situation where
the mental malfunction can escalate. These findings portray that each person guesses when to visit
and yet clinically, a person living with epilepsy should know the well articulated time to take the
drugs as prescribed by a health official.
Respondents were also asked to estimate the distance from the nearest health centre and below are
their responses in table 3.5.3.

31

3.5.5: Distance in Kilometers to Health Centres from the Community

Table 3.5.3 : Distance in Kilometers to Health Centres from the Community
Distance in Kilometers

BUSHENYI

MUKONO

SOROTI

TOTAL

n(%)

n(%)

n(%)

n(%)

25.4%
2.4%
0.7%
0.9%
0.1%
0.1%
2.3%

24.3%
3.5%
2.2%
0.7%
33.9%

31.9%
0.3%
0.2%
1.7%

81.6%
6.3%
3.1%
1.6%
0.1%
0.1%
7.2%

0-9
10-19
20-29
30-39
40-49
50-59
No Response

From the table 3.5.3 above, its apparently clear that majority of respondents across the three district
surveyed did suggest that the distance lies between 0-9 kilometers. This matches the Ministry of
Health intentions to decentralize health care and make the services accessible to all persons (Health
Sector Strategic Plan II 2005/2006 2009/2010). It must be noted that the present policy positions
provide opportunity for mental health interventions but overall, so many gaps do exist with respect
to the quality of health care services.
3.5.6: Health education
Table3.5.4:

Health education on Epilepsy

Bushenyi(N=279)

Mukono

Soroti

Total

( N=296)

(N=299)

(N=874)

Yes

11.3 %

4.7 %

24.3 %

11.9 %

No

88.7 %

95.3 %

75.7 %

88.1 %

It was shocking to note that when asked about health education to PWE, a majority of the
respondents (88%) in all the three districts lacked health education about epilepsy. This indeed
explains the prior ignorance about the causes of epilepsy and the assistance meant to be given to
person living with epilepsy. It can also be deduced from the finding that, there is very limited
provision of information, education and communication (IEC) materials to PWE to enhance their
coping mechanisms about living with the disability. Avuga, (2006) counteract the above when he
notes that all persons involved in the management of epilepsy should know that epilepsy can be
controlled by drugs if taken daily and categorically argues that a lot of information must be given to
PWE and their care givers.
Further, Ovuga concludes that education should focus on clinical diagnosis, treatment plan, drug
dosage schedule and the side effects as a must. It can thus be concluded that clinical management
32

without heath education remains incomplete and subtle in respect to patients compliance to the
treatment plan and awareness.
3.5.7: Quality and adequacy of Health care services
Table 3.5.5: How PWE are treated by Health workers
Bushenyi

Mukono(N=296)

Soroti(N=299)

Total(N=874)

(N=279)
Very well

24.8 %

11.3 %

13.2 %

16.7 %

Well

38.3 %

16.2 %

57.8 %

39.2 %

Badly

2.2 %

3.6 %

3.8 %

3.2 %

Chase away

0.4 %

0.9 %

0.0 %

0.4 %

Dont know

34.3 %

68.0 %

25.1 %

40.5 %

According to the respondents, quality was understood to comprise the waiting time it takes to see
the clinician, interpersonal relations between the PWE and service provider and availability of drugs.
Interestingly, 39.2% of the survey respondents believe that health workers treat the People living
with epilepsy well while 40.5% of them dont know how the health workers treat the PWE. This
brings an indication that respondents have never been either to health facilities seeking medical care
for PWE. The key informants interviewed in the three districts noted with concern the fact that
there is high level of stigmatization and were of the view that PWEs may be discouraged to join the
health centres for treatment.
This is supported by the reviewed data from World Health Organization which suggests that
between 60% 90 % of all PWEs do not seek or receive treatment due to inadequacies in the health
care system and due to social stigma WHO, (2007). Similarly, Ovuga, (2006), sharply notes that
several new anti consultant medication have been developed but none of these are in Uganda.
3.5.8: Human Resources and Pharmaceutical supplies
Attempts were made to establish the availability of health workers with requisite potential to manage
epilepsy. Specifically, the survey sought to establish how psychiatric officers are employed by
districts. In the health centers visited across all the districts, there was no psychiatric clinical officer.
However, it was established for the case of Bushenyi that the district employs two, with one
attached to the office of the District health officer while the other one is stationed at Kitagata
Hospital. In Bushenyi, further revelations were made that where as the staffing was at 46% (District
Health Official Records 2008), it is least likely that the posts of Enrolled psychiatric Nurses and
33

Psychiatric clinical officers were to be declared vacant. The argument was the issue of budget ceiling.
It is thus implied that it is not a priority concern and one can conclude that PWE are least
considered.
Not surprising, all respondents across different categories singled out the unavailability of drugs in
health facilities as a big challenge in the management of epilepsy. To the district health officials, this
is attributed to the low funding to the entire health sector and the fact that these drugs are quite
expensive. Implicitly, this can be a prohibitive factor to PWE to stop visiting health centres. Indeed,
when asked why preference is given to the traditional healers, many PWE in the focus group
discussion for Soroti district argued that among other, traditional healers will always give them the
herbs though the study team did not venture into the efficacy of the herbs.
3.5.9: Social Support services

3.5.9.1:

Involvement of PWEs in social support

GRAPH6.0:InvolvementofpeoplelivingEpilepsyintheSocialSupport
NetworksbyDistricts
80.0%

No. OF P'PLE

70.0%

72.3%

60.0%

60.0%

50.0%
40.0%
30.0%

39.4%60.6%

40.0%

20.0%

27.7%

10.0%
0.0%

BUSHENYI

MUKONO
Yes

SOROTI

No

Bushenyi (N=279), Mukono (N=296) , Soroti (N=299)

Majority of the survey respondents are of the opinion that PWEs are involved in social support
networks. However, this view is strongly contested by the PWEs. In Soroti where a focus group
discussion was conducted with PWEs, they reasoned that society discriminates a lot and also
stigmatizes PWEs. According to statistics in graph 6.0, there is generally an active involvement of
PWEs in social support networks in Soroti and Mukono districts, but not Bushenyi. According to
the findings, 55.3% of respondents (PWE) are actively involved in social support networks. This
could probably be a result of non disclosure or the way the disease manifests cannot easily deny
34

them a chance of living like fellow human beings. This however is also determined by the way
people living with epilepsy are viewed within the different localities and the attitudes directed
towards them that in turn could influence their participation in social support networks.
3.5.10: Discrimination and stigmatization
People living with Epilepsy are greatly stigmatized and discriminated against. Surprising but not
interesting is the fact that even in the homes of PWE, a lot of discrimination does exist. This may be
partly explained by the fears that relatives of PWE hold about their survival. A case in point can be
extracted from Bushenyi where a 35-year-old PWE has lived in confinement for over 25 years. She
has lived a typical life of a prisoner since she is kept in one small room and most of the time under
lock. When the biological mother was asked why this was the case, she replied:
I have to keep my daughter in a room or else I risk losing her life, in the past, she would get an epileptic
attack, people would simply laugh at her, am not even sure whether she was not ever raped, . The
community here thinks my family was cursed. We have tried several rituals but nothing, tried government
health care centres but every time we are informed to buy drugs. I have not been helped by health workers at
all. I have no choice8.
The survey therefore has shown that, the quality of life for PWE is lower compared to any other
members in society. The high levels of discrimination and stigma makes life difficult for PWE and
their family members. All the focus group discussants from the three districts highlighted the issues
of stigma and discrimination as serious issues influencing formal health seeking behavior amongst
PWE. Additionally, district health officers attributed the poor health seeking behavior to the
traditional belief that epilepsy is a disease
resulting from witchcraft and curses from the spirit. However, PWE who constituted the focus
group discussion from Soroti district had a different opinion, and unanimously argued that because
in most government centres there are no drugs and so it was useless to continuously visit them.
Further, it appears like consideration is
made to the relative advantages to visiting
traditional healers. Asked about the efficacy
of herbs, all the PWE in the group answered
in affirmation.

It is useless to visit government health

centressinceeverytime,wearetoldthat
drugs are out of stock. Yet, the
traditional healers are always well
stocked, understanding and we do not
have to make long queues. (Focused
groupdiscussantsPWESorotiDistrict)

Mother of an lady with epilepsy at 35 years, Burere Sub-County, Bushenyi district.

35

3.5.11: General Intervention strategy and Community concerns

In trying to probe the government interventions on how PWEs can be helped, the respondents
gave the inputs basing on what they sought could help to empower PWEs. The table 3.5.6 below
shows the frequency of the findings.

3.5.6: Advice of the community to the government of Uganda

Advice
Avail drugs for treatment of PWEs in all health facilities and Hospitals
Attach a department for epilepsy in all Health centres and Hospital
Sensitize the community about Epilepsy and Mobilize them to fight the
social factors related to the Epilepsy
Provide PWE with financial and social support
Take epilepsy as a serious social problem in the society

Frequency
55 %
17 %
16.6 %
10.8 %
0.6 %

Much they gave their inputs, many question expressed were left un attended. Question like, what
next after this exercise? Are there drugs for epilepsy? Are you now going to bring drugs for us? How
can we reach ESAU? Is ESAU willing to train PWEs to be able to help themselves? Are you going
to educate and sensitize the public about epilepsy? Do those drugs given cure epilepsy? Are you
going to help us now? Are you going to give us a copy of this report? Can someone with epilepsy
produce a child with it? How is epilepsy managed? These questions left un answered and a challenge
for ESAU and other stakeholders.

Key statistical feedback

Survey findings revealed that 87.7% of the respondents know a child living with epilepsy who goes
to school. It was also discovered that 76% of the respondents were aware of a child who dropped
out of school because he /she had epilepsy.
The findings also indicated that 81.6% the respondents walk a distance of 0-9 KMs to the health
facilities, with majority having to walk a distance of 2KMs from the health facilities.
Further, 33.9% of the respondents think that PWEs should go to the clinic for anti-epileptic drugs
monthly and 45.5% of the respondents dont know when PWE should go for anti- epileptic drugs.
Interestingly, 56% of the survey respondents believe that health workers treat the People living with
epilepsy well while 40.5% of them dont know how the health workers treat the PWE.
The findings further indicate that of the respondents 12% have received health education in
epilepsy compared to 88% who have never received heath education concerning epilepsy.
A small majority of 57% of respondents believe that people living with epilepsy are involved in
social support association.
Implication: PWEs are more likely to visit a health centre with anti epileptic drugs as indicated by
the high turn up at Mushanga health centre III.

36

CHAPTER FOUR
4.0

CONCLUSIONS AND RECOMMENDATIONS

4.1

Introduction

This last section of the report presents the major conclusions drawn from the foregoing discussion.
This section also outlines major recommendations for government, ESAU and its partners in
shaping policy development and service provision for PWE so as to improve their living standards.
The survey was conducted in three districts namely Bushenyi, Mukono and Soroti. The unit of
analysis was a household where only the head or the most significant adult was selected to
participate in the survey. Altogether, a total of 876 households were surveyed in nine sub counties,
45 parishes from the three districts. The survey utilized mainly personal interview schedule, key
informant interview and focus group discussions to gather evidence from the field and documentary
review was used to augment the field level data.
4.2

Knowledge, Attitudes and Practices

(a) Respondents understanding of epilepsy

It is apparently clear that majority of the persons interviewed had heard about epilepsy and were
sure that epilepsy existed amongst community members.

(b) Perceived causes of epilepsy

Largely, respondents perceived the cause of epilepsy to be witchcraft or evil spirits, an aspect that
meant to them that they should seek services from the traditional doctors. However, a minority of
the respondents did perceive the cause to be a mental condition but again not all of them were sure
whether epilepsy could be clinically managed.

(c) Perceived impact of ESAU

The overall judgment is that Epilepsy Support Association Uganda has not made enough impact and
majority of respondents had not heard about it. However, in the sub counties were much serious
sensitization had been done by ESAU, significantly, society had some basic understanding of issues
surrounding epilepsy. For those who had heard about ESAU, they noted the medium of radio,
newspapers and friends.
37

(d) Community reaction to an epileptic attack

With respect to the little information about epilepsy, communities have varied reactions but their
reactions are based on the level of education and attitudinal views towards PWEs.

(e) Community held views about PWE

The general thinking in the community towards the PWEs is that these people are much more
equated to a less level of privilege and competence in social issues. Subsequently, discrimination and
stigmatization is a serious issue.
Recommendation
1.

ESAU should intensively scale up the sensitization campaigns in all districts. It is evident
that in the districts (Bushenyi and Soroti) where advocacy has been done, more persons with
epilepsy are able to openly seek treatment from qualified health workers.

4.3

Prevalence of Epilepsy

Prevalence of generalized epilepsy in the surveyed districts Bushenyi has 9%, Mukono 8.4% and
Soroti 3.3%. The average prevalence is 6.9%. These statistics reflect a lower prevalence than that one
of the research carried out in 1996 in North Western region of Central African Republic in the
Ngaoundaye Sub-prefecture which registered 10.6% (African Journal of Neurological Science, 2002).
It also in line though below what the same Journal quoted of countries like Gambia, Liberia, Togo,
Madagascar, Western Uganda and Nigeria, which have an average prevalence of 10% per 1,000.
However, in comparison with other countries like the United States which is 4.7%, Thailand 7.2%,
Rural Bolivia 12.3%, Benin 15.9% there may be an under estimation since the other forms of
epilepsy were not catered for.
Recommendation
1.

Government of Uganda should use the estimate to plan and allocate resources to uplift
the standard of living for PWE

2.

ESAU with its partners should use the rate to inform policy development, service
provision and to engage all stakeholders. It is thus anticipated that the figures for PWE
will serve as an empirical basis for strategic interventions.

3.

There is a dire need to sensitize the general public on how to deal with epilepsy cases.

38

4.4

Social Services available for PWE

The major revelations regarding service provision to PWE are:

Health Centres are under funded and staffed to offer the basic services such as community
outreach, health education, general management of PWE

Significantly, all government Health facilities lack treatment guidelines for epilepsy.

PWE are more likely to visit traditional healers and witch doctors than visiting health
centres.

PWE are excluded from social support services right from their own homes up to
institutional levels.

PWE are least if at all or rarely considered, as all the districts had no clearly identified
budgetary vote for them. Further, no district had passed by-laws towards the protection of
PWE, an aspect that keeps them in vulnerable situation.

The education system is insensitive to the needs of PWE, with no clear-cut management
plan for PWE. Children with Epilepsy in schools are ridiculed, discriminated and
stigmatized by their fellow pupils, teachers and to worsen the situation, school management
system remains insensitive to the needs of such children.

Epilepsy is characterized with pervasive effects of social exclusion resulting from stigma and
discrimination.

The greatest challenges to service provision is the deep rooted community held view that epilepsy
cant be clinically managed. This notion has to be challenged
4.5

Recommendations
1. Provision of anti epileptic drugs should be a priority by both Ministry of health and district
Local government. Of particular importance, deliveries of drug strategies such the T.B and
malarias home-based treatment plan may be initiated, adopted and implemented. The
findings reflect that clearly reflects that 55 percent of the respondents suggest that drugs for
PWE should be availed, 17% of the respondents suggested that there is need for
government of Uganda and any other stakeholders to create access to epilepsy support
services nearer to the people at health facility level including level II.
2. To overcome the problem of lack of qualified staff to handle epilepsy cases, and in
consideration of the decentralizations system of governance, local governments should
39

prioritise recruitment and deployment of psychiatric officer at all health centres IV.
Alternatively, Ministry of Health through the health unit needs to orient the existing health
workers into the management of epilepsy.
3. Ministry of Health should increase its pharmaceutical supplies through the credit lines
specifically for the cause of PWE. This is premised on the understanding that the drugs are
relatively expensive for the village poor PWE and further, encourage PWEs to visit the
government health centres such that their portion of drugs may be availed for the
government plans according to patient attendance records.
4. There is a need for the health workers to regularly monitor PWEs. Amidst the lack of
transport means, the concept of village Health Teams (VHT) could be revamped. The
VHTs could be used to distribute anti epileptic drugs. This has numerous advantages and
will permit regular home visits and subsequently offer psychological support for continued
medication.
5. All positive steps must be boldly taken to lessen social exclusion and discrimination. This
will help those with epilepsy and their families to lead a better and more productive lives,
besides, it will encourage them to seek treatment at the right time and from the right service
providers.
6. Epilepsy Support Association Uganda as an umbrella organization has to support the
government in advocacy for people living with epilepsy and acts as a watchdog for ensuring
inclusion of PWE rights and needs. The public has to be sensitized about the importance of
thorough knowledge in First Aid if one gets a seizure as a way of avoiding injury and
stigmatization.
7. There was a recommendation that PWEs need to be provided with social and financial
support to overcome the issues of medication and poverty.36

40

REFERENCES
ESAU (1997): The Constitution of ESAU. Kampala Uganda
Epilepsy Support Association Uganda ( ): Promising Strategy Retrieved May 2, 2008, from http://www.ibeepilepsy.org
Jacoby A., Snape D., Baker G. (2005): Education for People with epilepsy In the Lancet:
Volume 4 Issue 3 page 171-179.
KABORE J K, CABORE J W. MELAKU Z, ET AL. Epilepsy in a focus of onchocerciasisin Burkina
Faso.Lancet1996347:836. RetrievedMarch20,2008,from http://www.ajns.paans.org
KELLYMG,AKOGUNOB.Rapidassessmentofonchocerciasisprevalenceandamodelforselecting
Communities for ivermectin distribution in West Africa. Zbl Bakt , Retrieved March 20, 2008,
from http://www.ajns.paans.org

Kipp W. Bumham G, Bumham J. Ochocerciasis and Epilepsy in Uganda, Lancet 1994.African

Journal of Neurogical Sciences. Retrieved March20, 2008, from http://www.ajns.paans.org
Luigi M Specchio, Ettore Beghi. (2004) Should Antiepileptic Drugs Be Withdrawn in Seizure-Free
Patients?. CNS Drugs 18:4, 201, Retrieved March 20, 2008, from http://www.blackwellsnergy.com
Maureen Nakatudde and Jackie Nakke (2007, July 18) Uganda: How to deal with Epilepsy, The New
Vision (Uganda), Retrieved April 10, 2008, from http://www.allafrica.com
Ministry of Health (Un dated): Health Sector Strategic Plan II 2005/2006- 2009/2010:
Kampala Uganda: Ministry of Health
Ministry of Health online: MOH National Health Policy Manual, Retrieved May 2, 2008, from
http://www.health.go.ug/pubs
Ministry of Health online: What you need to know about Epilepsy, Retrieved May 10, 2008, from
http://www.health.go.ug/pubs
Nambi S. (2006): Psychiatry for Nurses. New Delhi: Jaypee Brothers Medical
Publishers (P) Ltd.
NEWELLED, VYUNGIMANAF,BRADLEYJ E.Epilepsy,retardedgrowth andonchocerciasis,in
twoareasofdifferentendemicityofonchocerciasisinBurundi.TransRSocTropMedHyg199791:525,

Retrieved March20, 2008, from http://www.ajns.paans.org

Ovuga E. (2006): Psychiatry for Primary Health Care in Uganda. Makerere University,
Kampala: Fountain Publishers.
The Republic of Uganda (1995): The Constitution of Uganda 1995: Kampala, Uganda
The Republic of Uganda: Disability Act (2006): Kampala, Uganda
The World Health Organization (WHO, 2005a): Atlas Epilepsy Care in the World. Geneva:
41

The World Health Organization (WHO, 2005b): From neglected Disease to Neglected
Population: to reach the Unreached. Kampala-Uganda:
WHO
The World Health Organization (WHO, 2006): Uganda Non communicable Diseases Risk
factor survey. Kampala-Uganda: WHO
Uganda Bureau of Statistics (March 2005): The 2002 Uganda Population and Housing census Report,
Kampala Uganda.
WHO (February 2001) Epilepsy: Social Consequences and Economic aspects Retreived March 20, 2008,
from http://:www.who.int/mediacentre/factsheets/fts166/en/

42