Navigating Support Pathways for Children with Developmental Language Disorder in Chile: Caregivers' Perspectives...

Developmental language disorder (DLD) is a prevalent neurodevelopmental condition with long-term consequences for children's learning, participation, and well-being. Although evidence from high-income settings shows that families often report navigating fragmented and poorly coordinated support systems, little is known about how these systems operate in Latin America from caregivers' perspectives. This study describes support pathways for children with DLD in Santiago, Chile, focusing on how families access, experience, and sustain support across health and education services.

We conducted an interpretive qualitative study using semi-structured narrative interviews with nine primary caregivers of children aged 6-9 years with a formal diagnosis registered as Specific Language Impairment (SLI) in the Chilean system (administratively aligned with DLD). Interviews were analyzed using reflexive thematic analysis, guided by key concepts from care pathways and therapeutic itineraries that informed the interpretation of transitions, institutional interactions, and meaning-making.

Caregivers' narratives described support pathways as dynamic and nonlinear, shaped by interactions between family interpretations, institutional gatekeeping, and structural constraints. Three interconnected stages were identified: (1) initial suspicion and early help-seeking, marked by uncertainty, uneven professional guidance, and trial-and-error navigation; (2) diagnosis and entry into specialized services, in which Special Language Schools functioned as key gateways to diagnostic confirmation and sustained support; and (3) primary education, characterized by discontinuities in intensity, communication, and coordination when support shifted to School Integration Programs (PIE). Across stages, weak intersectoral coordination, socioeconomic barriers to complementary private therapy, and COVID-19-related disruptions accumulated over time, positioning caregivers as informal coordinators of care. Diagnosis also operated as a sociocultural and administrative credential for access to services.

In Santiago, DLD support pathways rely heavily on education-sector gateways and caregiver-mediated coordination within a mixed and weakly articulated system. Policies should strengthen early guidance and referral mechanisms, institutionalize coordination between primary care, Special Language Schools, and primary education, and reduce inequities by ensuring continuity and adequate intensity of supports without dependence on families' resources.