Healthcare Providers' and Community Leaders' Knowledge and Perceptions of Neurocysticercosis in Rural Bolivia

Abstract

Background: Neurocysticercosis (NCC) is a preventable infectious disease that is considered a major cause of epilepsy in developing nations. Bolivia is one of the least developed nations in Latin America and in rural Bolivia persons with epilepsy (PWE) go largely without treatment. Epilepsy is a devastating disease that has the capacity to significantly decrease the quality of life, not only for PWE, but for their families as well. The development and implementation of a self-sustainable program for the prevention and treatment of NCC and the consistent treatment of epilepsy is essential. However, research on epilepsy and NCC in Bolivia, whether in the urban or rural population, is extremely sparse. The central premise of this study is that rural Bolivian communities have the need for a self-sustaining program for the treatment of epilepsy and for the prevention of NCC. Purpose: Using a qualitative descriptive design, the purpose of the proposed study is to determine the knowledge and their perceptions of community barriers and facilitators among health care providers and community leaders regarding NCC and epilepsy. Sample: A sample of 12 health care providers and community leaders representing 14 communities in the Bajo Isoso district, El Chaco region, Bolivia were included. Methods: Gatekeepers were identified and assisted with entry into the communities and identification of participants. A semi-structured interview format was used to elicit participant descriptions of knowledge of cysticercosis and epilepsy, and of their perceptions of community barriers and facilitators regarding cysticercosis and epilepsy. Individual interviews were audio-recorded, transcribed, coded manually, and analyzed using the content analysis method. Findings: Data analysis revealed four major themes; Knowledge of Cysticercosis, Resource Availability Related to Cysticercosis, Perceptions of Responsibility for Addressing Cysticercosis, and Perceptions of Impact of Cysticercosis on the Community. Relating to the conceptual model PRECEDE-PROCEED used in this work, resource availability was an enabling factor, while the other themes were predisposing factors of the problem. Major findings of this study were that knowledge about cysticercosis and epilepsy was lacking, resources to address cysticercosis were severely limited, that community members perceived the problem as highly significant and needing to be urgently addressed, and that there were positive attitude toward accepting community responsibility for addressing the problem of cysticercosis. Implications: This study suggests that lacking resources is a major factor impacting the problem of neurocysticercosis in the region, and that education to address gaps in knowledge, in collaboration with the community leaders, would be an appropriate and effective next step in working towards development of a self-sustaining program for the prevention and treatment prevention of NCC.