Mumbai, India (N. Bharucha and M. Weiss)
Near Mumbai in 1986, a program was started to enable the basic structure of rural health care in India, the primary health care center, to expand its care to epilepsy. Primary health care workers were trained to identify possible patients with epilepsy, with the diagnosis being confirmed or changed by neurologists who would come to the primary health care center. If it was confirmed, PB was prescribed, and the treatment maintained by the PHWs.
When the primary health care system was first visited, the researchers were told not to waste their time because there was no epilepsy. However, now 188 people are under treatment (122 male and 66 female patients). Before entry into the study, 60 people were receiving allopathic treatment, 21 allopathic plus nonallopathic, 39 nonallopathic, and 68 no treatment.
Essentially, the study was trying to tackle how anthropologic and epidemiologic problems could be solved together. The approach involved using quantitative epidemiologic techniques and anthropologic techniques that focused more on illness experience than on traditional rates of occurrence and risk factors in disease outcomes. This led to the development of a method that investigated both the experience and the meaning of epilepsy with respect to outcomes of practical clinical significance.
This method was initiated by asking about patterns of distress: What is it that is bothering people? This would not only include clinical signs and symptoms that led clinicians toward a diagnosis, but also the perceived causes, which may be different from the established biomedical ideology. After this were questions concerning help seeking and treatment: How have people actually tried to address their problems in the community?
It should be mentioned that it was important for people to realize that the questions asked were not meant to test them in any way. If interviewees did think this, they would try to please the interviewer with the answer rather than providing a personal response. Open-ended queries were essential, for example: What is it that has been bothering you? What do you feel is the cause of this problem? What kind of help have you sought? In response to such questions, people generally provided an answer that was at the front of their minds rather than one aiming to please. The answers given then needed to be probed based on knowledge of the problem and of the community. For example: Which problem do you consider most important? Which provider did you go to first? This helped to build up a picture of how things are prioritized within the community and around the illness experience of epilepsy.
From the patterns of distress section, all but one respondent mentioned seizures. Although not usually expressed in response to the open-ended query concerning the nature of their problems, sadness and depressive symptoms were emphasized above all other aspects of problems when the respondents were asked further questions. Stigma was also an important aspect of the study, especially in terms of comparing it with other aspects of illness experience. For example: Are people who emphasize sadness or anxiety in the account of their illness more likely to associate stigma with their problem than are others? Are particular perceived causes or particular emphases on help-seeking more likely to be related to stigma or not?
Although authors were keen not to put much weight on the findings of the study, they stressed that their approach was essential. It was invaluable in understanding how the health system operated and what the perceptions of epilepsy were within the community. It should help to provide a cultural epidemiologic point of view as well a guide to clinical practice. For the clinician operating within a community, it is important to know the local conceptualization of epilepsy and what people's expectations are. The method presented both analyses and summarizes the situation. However, this analysis then begs the question, how can people with epilepsy receive better social and medical treatment? The service described later provides one way forward in answering this question.
Community Based Rehabilitation (D.K. Pal)
One model of service delivery for health and disability services is community-based rehabilitation (CBR). This is an increasingly used model in developing countries and addresses the problem that most people with disabilities in developing countries live in rural areas and are mostly poor. As a result, disability is usually not the sole priority in their lives.
The three main aspects to CBR are
- 1Rehabilitation within the community, for that person and within that family;
- 2Equalization of opportunities, fighting the effects of prejudice and discrimination; and
- 3Integration within one's own community, within a school, within employment.
One of its main advantages is its low-cost approach. This is because it uses local resources: the disabled people themselves, their families, and those people around them. Why is CBR an appropriate vehicle for epilepsy? First, the theoretical rationale: cerebral impairments are often associated with epilepsy. Epilepsy is also a social handicap, and CBR is a life-long approach. Therefore, as long-term follow-up is vital to the success of treatment programs, CBR seems ideally suited for epilepsy treatment.
This present research used the theoretic framework known as the stress and coping research model, based on the work of Lazarus from the 1970s. This framework looks at stresses that may be short term, such as having a bad day, or a short-term illness, and long-term stresses such as poverty or disability. It looks at what resources are available to that individual, and it looks at what coping strategies are used to mobilize those resources, whether they are financial or psychological. Finally, it looks at outcomes in terms of individual and family and other broad outcomes. The aims of the study also partly included a look at a clinical trial for PB. The other main aim was to look at broad outcomes for intervention in the community setting.
This was an intervention study for children with epilepsy. Behavioral problems, how social integration changed, and how parents adapted to their children were studied. It also involved an epidemiologic study. From a population of almost 120,000, more than 300 were screened positive in the first stage, with 132 people being verified as having epilepsy in the second and final stage. Most of those who were eligible for the treatment trial entered that trail.
To perform the intervention, the study joined forces both with the CBR group and also with the local mother-and-child clinic. Doctors were trained in the MCH clinic to diagnose and treat epilepsy, and the disability workers in the CBR program would visit the families at home. These workers had several roles: to counsel families, to give first aid advice, to give support to the whole family, to make a neurodevelopmental assessment of these children, to design an individual program to promote their rehabilitation, to assess what their social relations were like, to act as advocates within the community to get them back into school, to get them playing with other children, to open up opportunities for them, to act as a medical liaison, and to count tablets and report back to the clinic on compliance.
We found with respect to social integration that 90% had deficits of some degree and that preschool children were not fully accepted by their peer group. The social integration of girls was not so affected, because many of their social responsibilities or normal social functions were within the home. After 1 year of intervention, improvements were found in both boys and girls, in young children and for older children, but more so for girls.
Some parents had some very negative feelings about their children, sometimes wishing that they were dead. Many families had difficulties in setting limits for discipline, and this may have been a factor in their children's behavioral problems. Great numbers had low expectations for social success with their children, and many mothers (78%) reported feelings of guilt, low self-esteem, and depression. Many of them believed that it was their fault that they had given birth to a child with epilepsy. Interestingly, the strength of social support available to parents throughout the 1 year follow-up, and whether the drug worked or not, predicted good parent adjustment. However, for children who had a high level of seizures, parents were less easily adjusted to their diagnosis.
Concerning behavioral problems: sex, age, number of seizures, type of seizures, presence of cerebral impairment, which drug was used, paternal education, and income were studied. It was found that none of these were of significant importance. The strength of social support was the sole independent predictor of behavioral problems in children.
At the end of the year, all the families were revisited, especially those who had dropped out. On average, 4 weeks of clinic attendance during the year had been missed by the 90 or so families in the study. The reasons for defaulting were studied, and it was found that these were first, maternal illness; second, child illness; third, domestic commitments, like marriages and going to visit family and so on; and fourth, problems of access, either geographic during the monsoon season, or financial because of seasonal income during the harvest time.
Drop-out was another interesting finding. Fewer than a third of the families dropped out of treatment by the end of 1 year. There were three main categories. The first was that the diagnosis itself was unacceptable. This reflected the screening and ascertainment methods, which forced the diagnosis of epilepsy on some people who did not want it. The second main reason was access, and this was mostly financial and social. For some people, the social cost of taking half a day away from domestic duties to come to the clinic was too much. In the latter part of the year, about a fifth dropped out because they no longer had seizures and so did not see the point of continuing follow-up.
The researchers concluded that CBR proved to be a good vehicle for epilepsy intervention. It promoted fairly good follow-up, almost 70%, and compliance was also good. It meant that people with the most needs were assessed appropriately and received the input they deserved. This enabled the intervention to be equitable. Intervention was tailored to the family needs by going to the home and deciding what their needs were. The costs were also amazingly low. The complete cost, including drugs, salaries, disability workers, and so on, came to $1 per child per month. This shows that including epilepsy in an existing service can enable the intervention to be very cost-effective.
In summary: PB was found to be a very effective drug; there were pervasive deficits in social integration in all the children of both sexes and all ages; and mother/child relations were affected. Intervention objectively improved both social integration and parental adjustment, and social support influenced both parental and child outcomes. This led the researchers to propose the following implications for service delivery:
- 1PB was acceptable as a first-line agent.
- 2A nonmedical intervention was very valuable.
- 3Social support role is vital to prognosis. Service has to relate to a socioeconomic context, and a CBR is one of the valuable frameworks of control.