Academic journal article Human Organization

Treatment Seeking for a Chronic Disorder: How Families in Coastal Kenya Make Epilepsy Treatment Decisions

Academic journal article Human Organization

Treatment Seeking for a Chronic Disorder: How Families in Coastal Kenya Make Epilepsy Treatment Decisions

Article excerpt

A person-centered case-study approach was used to account for treatment choices made by families of children with epilepsy seizure disorders in Kilifi, Kenya. Observations of individual families and treatment providers suggest that the local cultural system of illness classification and the process of assessing treatment results are fundamental influences on family decisions to seek treatment for childhood seizure disorders. The findings also indicate that the dominance of these two factors shifts throughout the illness experience. Family classification of seizures and cultural perceptions of their causation are primary in initial treatment seeking, while the perception of results of the last treatment sought dominates subsequent treatment decisions. External factors, including pressure from individuals outside the family, and financial and time resources, are described as secondary constraining factors in the decision making process. A model is presented to summarize the decision making process. The model accounts for treatment seeking in families of children with seizure disorders in coastal Kenya but may also help explain how families manage other chronic conditions.

Key words: Family health, treatment-seeking, decision making, epilepsy, health utilization, treatment gap, chronic illness, East Africa, Kenya

First I went to the hospital because I thought that it was malaria, and I know that malaria is for the hospital. But later, that place [the hospital] was not good for her condition. I decided that it was necessary that I go to try the traditional healer. Now that is where I go and the child is getting better. This thing [epilepsy] is different, it keeps going and going and it never stops. You have a lot of worry because it is necessary that you continue deciding 'what should I do now.'

- Mother of a child with epilepsy in Kilifi, Kenya


Social scientists have examined the determinants and process of treatment seeking for individual illness episodes. However, there is a gap in our understanding of how individuals and families make treatment decisions when confronted with persistent chronic conditions. In The Spirit Catches You and You Fall Down, Ann Fadiman recounts the attempts of one Hmoung family in Central California to treat their daughter's recurring seizure disorder (Fadiman 1998). Fadiman's work highlights the complexities of seeking treatment for a chronic condition when doctors and patients hold dissonant cultural conceptions of illness. In cases of chronic illness, such as a persistent seizure disorder (SD), or epilepsy, treatment seeking is a complex process. Each subsequent treatment decision is different from but also affected by the outcomes of previous decisions. The experiences of the individuals and families who seek treatment provide valuable insight into this process.

This article presents a decision model developed to account for treatment choices made by families of children with SD. The model summarizes findings from a person-centered ethnographic approach to the study of treatment seeking. Qualitative data were analyzed to identify factors that influence decision making in family members responsible for choosing the child's treatment. Survey methods were also employed to provide background on community seizure beliefs and treatment practices.

Some studies have related treatment choices to sociocultural changes or tensions (Beckerleg 1994; Sussman 1981). Other investigations have modeled decision making by specifying the factors that predict the behavior of individuals (Fabrega 1973; Hurwicz 1995; Izquierdo 1995; Mathews and Hill 1990; Young 1980; Young and Garro 1994). However, few studies have examined the unique type of treatment seeking involved in managing chronic illnesses like childhood SDs. Further research focusing on treatment seeking in cases of repeated symptom presentation is required to inform intervention policy and facilitate positive program outcomes. …

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