Abstract

1. 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.

2. 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

3. 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

4. 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 membersPhase 2: a cluster randomised control trial- To implement and evaluate the intervention using measures of drug adherence, seizure frequency, mortality and quality of life

5. Methods: Phase 1 • Participants8 focus group discussions and 21 individual interviews have been conducted with stakeholders: • Research questions1. 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? Children and adults with epilepsy Service providers: hospital/ private clinic physicians; traditional healers; community health workers Parents, siblings and grandparents of children with epilepsy Interveners: epilepsy NGOs

6. Results Beliefs about epilepsy Effects on use of services 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 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

7. 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 Cost of treatment Exclusion and stigma Parental depression Needs Community education to reduce stigma Provision of low cost treatment Practical assistance in daily activities

8. 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

9. 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)

10. Background: Epilepsy • Approximately 50 million people • worldwide have epilepsy, and are • at risk of: • decreased life expectancy • psychosocial problems • social isolation • reduced chances of employment • or marriage • increased risk of unexpected death • A further 500 million • are affected indirectly • as parents, relatives and • friends, and are at risk of: • social isolation • depression • increased financial • burden