Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity: a Qualitative Study

Background: Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Hispanic children face many challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents with limited English proficiency (SSP-LEP). Methods: This was a qualitative study of 70 children of Spanish-speaking caregivers, enrolled in a complex care program of a tertiary care children’s hospital in North Carolina. Secondary source data were abstracted logs of care coordination tasks maintained by the program’s two bilingual care coordinators for a median observation period of 45 months, and complemented by data from care coordinator interviews. Data were entered and coded in ATLAS.ti. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers. Results: Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified as follows: (1) caregivers faced many communication challenges primarily because of language barrier. (2) Multiple factors at caregiver, provider, and system levels, in addition to language barrier, contributed to communication challenges. (3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual coordinators. Conclusion: SSP-LEP face unique communication challenges resulting in negative impact on the healthcare of their CMC. Bilingual coordinators can help improve communication between SSP-LEP and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.