Neurocysticercosis in Northern Peru: Qualitative Insights from men and women about living with seizures

Background Neurocysticercosis (NCC) is a helminthic disease of the central nervous system, and it is one of the leading causes of seizures and symptomatic epilepsy in countries with tropical regions like Peru. Studies of people with epilepsy in Peru’s northern coast have consistently found that between 30% and 50% of epilepsy cases is associated with NCC. There are few studies that report on the differences in incidence and prevalence of NCC by sex, and to our knowledge, none that consider the gendered dimensions of having epilepsy. Methodology This qualitative study based on individual interviews (n = 9) and focus group discussions (n = 12) explored the challenges of diagnosis and the implications for everyday activities among men and women with epilepsy as well as the views of their family members on the impact of such condition. Principal findings The explanatory models used by women to discuss their condition reflect low levels of decision-making power in areas such a reproductive health, health care access and treatment. For some women domestic violence is also a probable cause for seizures among women. The implications of living with neurocysticercosis and the accompanying seizures were reported differently by men and women. While women were mostly concerned about their capacity to perform their domestic responsibilities and their roles as mothers and caregivers; men were mostly concerned about the impact on their income generation activities. Women and men shared concern about the consequences of their condition on the wellbeing of their families. Conclusions/Significance NCC is a disrupting experience for men and women in ways that reflect their position and roles in society: Women as caregivers within the home, men as income generators outside the home. Further gender research is needed to better understand and address the differential impacts of NCC and health system responses as well as gendered dimensions of prevalence and incidence. (268 words)
Author summary Neurocysticercosis (NCC) is a condition caused by a parasitic infection associated with tapeworms that usually results in seizures. NCC is common in tropical areas such as Northern Peru where families in rural communities breed pigs. Neurocysticercosis is a helminthic disease that is acquired through faecal-oral contamination. Poor sanitary facilities and poor hygienic practices are factors that increase the chances of infection. NCC affects the central nervous system and this usually results in seizures and symptomatic epilepsy. In this article we explore the implications of living with NCC using a gender lens. We describe the different ways in which men and women explain and cope with seizures and show that while both men and women see their abilities to perform everyday tasks diminished; women’s concerns revolve around not being able to perform their responsibilities as mothers and housewives, while men worry about the wellbeing of the family as a result of their reduced capacity to engage in income generating activities. Further research to document whether gendered activities result in differential exposure to NCC is needed to have a better understanding of the various ways in which gender impacts the health status of men and women in poor rural areas.