Transcript Abstract - WHO archives

Abstract
Problem Statement
Epilepsy is the most common chronic neurological condition in childhood. The World
Bank has prioritised epilepsy as a highly cost-effective condition to treat, as antiepileptic
drug (AED) treatment is cheap and effective in controlling seizures. However, over 90%
of people in resource-poor countries, including Kenya, do not access this treatment for
their condition. This treatment gap is thought to be influenced by various factors
including lack of access to or knowledge of AED treatment, financial restrictions, stigma,
beliefs about the causes of epilepsy and poor communication between healthcare
providers and service users.
Authors
Carter J, Murira GM, Molyneux CS, Newton CRJC, Hartley S
Objectives
To examine possible intervention strategies to reduce the epilepsy treatment gap in Kilifi
District by exploring stakeholders’ perceptions of epilepsy and its treatment. To use this
data to develop alternative intervention strategies based on the expressed needs and
perceptions of the stakeholders.
Design
Qualitative study.
Setting and Population
Kilifi District on the coast of Kenya, in the catchment area of Kilifi District Hospital
(KDH). Purposive samples of stakeholder groups – children with epilepsy, their families
and service providers (allopathic and traditional) – were recruited to the study.
Participants were selected to reflect a spectrum of severity of epilepsy, level of parental
education and previous inclusion in AED drug studies to elicit a range of views and
perspectives.
Intervention
The intervention will form phase two of this study, to begin in 2004.
Results
In our hospital, AEDs were provided at little or no cost but adherence was still below
10%. In-depth individual interviews and focus group discussions were conducted with
parents of children previously involved in AED studies, traditional healers, community
health workers and doctors. A thematic analysis of the data identified factors contributing
to the epilepsy treatment gap in Kilifi District, including beliefs about the nature of
epilepsy and its treatment, regulatory and supply factors, financial constraints and
information, education and communication issues at provider, patient and caretaker levels.
Participatory workshops are currently being held, using this data to negotiate an
intervention with key stakeholders.
Conclusion
Although other studies have been carried out into the epilepsy treatment gap, the process
of our study is different to most in that we have aimed to base our intervention on the
expressed needs and perceptions of community members. Identifying the cultural
context, values, beliefs and community norms of stakeholders promotes the design of a
more effective and sustainable intervention to improve the use of AEDs.
Background: the Epilepsy
Treatment Gap
 Antiepileptic drugs (AEDs) are effective in
controlling seizures: 75% of people treated
become seizure-free
 Phenobarbitone – the first-line drug
recommended by the WHO – is relatively
cheap
BUT
At least 90% of people in developing
countries receive no appropriate AED
treatment
The Epilepsy Treatment Gap is defined as:
the difference between the number of
people with active epilepsy and the number
who are being appropriately treated
Setting
Study area:
• An area of approximately 100,000 people
surrounding a rural district hospital in Kilifi
District, Kenya
• The area is under demographic surveillance
with a repeat census every three months
• The prevalence of epilepsy among children
over 6 years is estimated at 2.2%
Less than 10% of children with active
epilepsy are receiving appropriate
treatment
Methods
Aim: to design, implement and evaluate an
intervention to address the epilepsy
treatment gap
• Successful interventions:
- are integrated within community health care
- involve the community in planning and
implementation
• Therefore, we have a two-phase study:
Phase 1: an exploratory study using
qualitative methods
- To investigate the reasons for the treatment
gap in Kilifi District
- To develop intervention strategies based on
the expressed needs and perceptions of
community members
Phase 2: a cluster randomised control trial
- To implement and evaluate the intervention
using measures of drug adherence, seizure
frequency, mortality and quality of life
Methods: Phase 1
• Participants
8 focus group discussions and 21 individual
interviews have been conducted with stakeholders:
Parents, siblings
and grandparents
of children with
epilepsy
Children and
adults with
epilepsy
Service providers:
hospital/ private
clinic physicians;
traditional healers;
community
health workers
Interveners:
epilepsy
NGOs
• Research questions
1. What are stakeholders’ attitudes and beliefs
about children with epilepsy?
2. How do these attitudes and beliefs affect the
utilisation of services?
3. What are the specific needs of children with
epilepsy and their families?
4. How could the services offered to this population
group be changed so these needs are met?
Results
Beliefs about epilepsy
Juxtaposition of natural and
supernatural causes:
“It’s caused by the evil spirits.”
FGD Health worker 3
“Birth injury or malaria is
usually what starts it”
FGD Mother 4
Effects on use of services
Different treatment for
different causes:
“The fits caused by
inheritance, people usually
go to traditional Healers...”
FGD Health worker 5
‘Types’ of epilepsy by age:
“She used to be taken to a
traditional healer for it was
’nyuni’ [fits in younger children].
But she has passed the nyuni
age and she is still like that…”
FGD Grandmother 3
Usefulness of treatment
determined by type:
“If it’s normal or from God,
one can be healed but if
it’s due to ‘vitsala’ [fits in
adults], you will treat in vain
FGD Grandmother 1
Expectation of cure:
“Many people have this illness
and have not been treated to
the extent of getting healed.
That’s why people do not take
try treatment in most cases.”
FGD Sibling 1
Treatment without cure
may not be acceptable:
“What I want is to get
healed, that is it.”
FGD Adult with epilepsy 1
Beliefs in service efficacy:
“The traditional healer might try
and treat until he says this has
defeated me. So you change
plan and seek for prayers. They
might work so you get cured.”
Interview Mother 2
Changing from one type
of treatment to another:
“I used to take her to the
traditional medicine man but
did not see any progress so
I decided to go to hospital”
Interview Grandmother 2
Results: Problems and needs of
children with epilepsy
Community-based treatment
to reduce travel costs and time
spent accessing treatment
Information and support
for parents and other
family members
Injuries
Practical
limitations
Developmental
problems
Problems
Side effects
of AEDs
Exclusion
and stigma
Cost of
treatment
Parental depression
Community education
to reduce stigma
Needs
Provision of low cost
treatment
Practical assistance in
daily activities
Results: Views of services and
how they could be changed
Home treatment
Includes: application of water, oil or urine; putting
the child in a safe place
Advantages: settles patient, quick
Disadvantages: guesswork, causes family
arguments
Hospital treatment
Advantages: service from experts, protects the
child’s brain, rigorous investigations using
equipment, good service
Disadvantages: cost, distance from home, can be
discouraging (ie. when told there is no cure),
waiting time, some doctors don’t listen
Traditional healer
Includes: herbal treatments, spiritualist treatment
Advantages: close to home, encouraging (assured
of a cure), protection from further bewitchment/
curse
Disadvantages: guesswork, cost (of repeated
visits if the treatment doesn’t work), questionable
safety of some treatments
Implications
• The data from phase 1 suggests the following
issues need to be considered in the intervention:
- Lack of information on what epilepsy is and
how it should be treated was mentioned by
participants in all stakeholder categories
- There is a disparity between the expectation of
a cure and the control that AEDs can provide
- Several service providers commented on the
possibility of collaboration between different
service sectors
- Finances are an obvious problem but often in
terms of the indirect costs rather than the
direct costs
• Possible interventions
- Educational programme
- Provision of community-based services
- Collaborative services (with community health
workers, traditional healers, local dispensaries)
Background: Epilepsy
Approximately 50 million people
worldwide have epilepsy, and are
at risk of:
A further 500 million
are affected indirectly
as parents, relatives and
friends, and are at risk of:
• decreased life expectancy
• social isolation
• psychosocial problems
• depression
• social isolation
• increased financial
• reduced chances of employment
burden
or marriage
• increased risk of unexpected death