Family and Provider Perceptions of Barriers to NGO-Based Pediatric Surgical Care in Guatemala

Abstract

Background: Globally, there is often a gap between medical need and access to care, and this is particularly true for surgical care for children. In Guatemala, for instance, families frequently pursue care outside of the government health system. Using a structured anthropologic approach, we sought to explore the barriers to surgical care for children in Guatemala, suspecting both financial and cultural barriers were the primary obstacles families had to face.Study design: Twenty-nine parents/guardians of children receiving surgical care at two non-governmental organizations (NGOs) in Guatemala and 7 health care providers participated in semi-structured interviews to explore what they believed to be the impediments to care. Transcripts were analyzed using a grounded theory approach. Current models for barriers to care were critiqued and a novel Framework for Barriers to Pediatric Surgery in Guatemala (FBPSG) was developed, which highlights both the existence, and centrality, of fear and mistrust in families' experience.Results: Families and providers identified financial costs, geography, and systems limitations as the primary barriers to care. Mistrust and fear were also voiced. In addition, health literacy and cultural issues were also thought to be relevant by providers.Conclusions: Due to biases inherent in this sample, parents/guardians did not necessarily report the same perceived barriers as healthcare providers - e.g., education/health literacy and language - and may have represented a "best case" scenario compared to more disadvantaged populations in this specific Central American context. Nonetheless, financial concerns were some of the most salient barriers for families seeking pediatric surgical care in Guatemala, with systems limitations (waiting time) and geographic factors (distance/transit) also being highlighted. Fear and mistrust were found to be deeper barriers to care and warrant reevaluation of organizational heuristics to date. NGOs can address these worries by working with individuals and organizations already known by and trusted in target communities and by providing good quality medical treatment and interpersonal care.