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Paper short abstract:

I bring together the concepts of lay expertise and cultural health capital in my analysis of ethnographic observations with mothers of children with Congenital Zika Syndrome in Colombia, to demonstrate their agency and resilience in negotiating health care access on behalf of their children.

Paper long abstract:

Mothers are most commonly the primary caregivers for children with Congenital Zika Syndrome in Colombia. They navigate health systems on behalf of their children and frequently struggle to gain timely access to high quality routine appointments, investigative and diagnostic testing, and therapies for them. This work is highly gendered, and their low socio-economic status intersects with the complex disabilities of their child and for some, their status as migrants, to create a great deal of uncertainty and exclusion. With years of experience, they have become lay experts at navigating health systems and negotiating access to services. In the existing literature on health system navigation, the agency of patients and carers is neglected; their responses to barriers are rarely reported. Drawing on 10 months of ethnographic fieldwork, I will discuss the diverse strategies that these mothers use to navigate and negotiate health care access. Bringing together Madden’s (2015) conceptualisation of cultural health capital with the notion of ‘lay expertise’ enables me to highlight their agency and resilience. They work within systems by escalating their complaints to senior staff or higher offices, seeking referrals to alternative providers, or engaging in legal proceedings. They also go outside of official channels and find unconventional and creative routes to desired outcomes, using deception or stubbornness, deliberately modifying how they speak or act in order to be taken seriously, drawing on personal contacts, and calling in reinforcements. These strategies reflect the cultural health capital that these mothers have acquired since the births of their children.