Peer-reviewed article
"I'm not moving from here until you resolve this for me": mothers of disabled children overcoming barriers to health care.
Greiner R ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This ethnographic study examines how mothers of children with Congenital Zika Syndrome in Colombia navigate and overcome barriers to healthcare access. Rather than simply documenting barriers, the research focuses on the strategies mothers use to secure specialist care for their disabled children. The study shows that mothers draw on both formal and informal healthcare resources, biomedical and alternative interventions, and knowledge-sharing networks to ensure their children receive needed care. The research highlights the critical but often-overlooked role of mothers' unpaid caregiving labour in healthcare access and outcomes.
Key points
- Mothers of children with Congenital Zika Syndrome adopt diverse strategies to navigate healthcare barriers on behalf of their disabled children
- Mothers combine formal and informal spaces of care, accessing both biomedical and alternative interventions
- Mothers actively share health management information with other caregivers to support collective problem-solving
- The gendered reproductive labour of mothers is essential to ensuring healthcare access and efficacy for their disabled children
- Previous research has focused on barriers themselves, but this study shows how caregivers actively overcome them
Limitations
The study is based on ethnographic research with mothers in one city (Barranquilla) and focuses specifically on Congenital Zika Syndrome, so findings may not generalise to all disabled children or all contexts. The research does not provide quantitative outcome data on healthcare access improvements or child health outcomes.
Abstract
Mothers of disabled children typically fulfil the role of the primary caregiver. For mothers of children with Congenital Zika Syndrome in Colombia, the caregiver role extends far beyond the provision of direct personal care within the private sphere of the home. Their children require specialist interventions, and mothers negotiate access on behalf of their children. In the process, they frequently encounter barriers to timely access to healthcare and welfare for their child. Barriers and facilitators have received significant attention in the literature, but caregivers responses to barriers have been largely overlooked. Drawing on ethnographic research conducted between February 2022 and March 2023 with mothers of children with Congenital Zika Syndrome in Barranquilla, Colombia, I address this gap. In my analysis, I bring together Menéndez' concept of autoatención (self-management) with Madden's conceptualisation of cultural health capital to explore how mothers respond to barriers and negotiate access to healthcare on behalf of their child. They adopt diverse strategies to draw together formal and informal spaces of attention and care, make use of both biomedical and alternative interventions, and share information about how they manage their child's health with other caregivers. This analysis highlights the essential role of their gendered reproductive labour in ensuring healthcare access and efficacy.