Barriers to Caregiver Empowerment and Health Literacy in Low-Resource Pediatric Rehabilitation: A Case Study from Bolivia
Sagrario Pérez-de la Cruz, Ivonne RamírezBackground/Objectives: In Latin American pediatric neurorehabilitation, clinic-centric models frequently reduce primary caregivers to passive bystanders. This study analyzes technical communication barriers, logistical constraints, and health literacy demands among caregivers at a university rehabilitation center in Bolivia to support a paradigm shift toward community co-therapy. Methods: A sequential mixed-methods design was employed. Qualitative semi-structured interviews were conducted with 19 primary caregivers (89.5% mothers, 10.5% fathers) of children with neuromotor conditions (aged 6 months to 6 years, mean age = 3.2 ± 1.4 years), integrated with descriptive frequency analyses to categorize structural bottlenecks. Results: Substantial logistical barriers were identified: 100% of families were restricted to a single weekly session due to center saturation, 89.5% relied on public transit, and 68.4% commuted over one hour. Additionally, spatial overcrowding (84.2%) and noise pollution (73.7%) created environmental interference. A marked health literacy gap emerged: While 94.7% reported general treatment understanding, 68.4% demonstrated an unmet technical competence gap, requesting structured visual tools to safely perform maneuvers at home. Intercultural language barriers further alienated indigenous caregivers. Conclusions: Isolated weekly sessions, within the framework of existing neurodevelopmental literature, may be clinically insufficient to sustain optimal progression unless complemented by home-based care. Decentralizing technical competencies through tailored health literacy strategies is an important avenue to explore for empowering caregivers as community co-therapists.