Abstract

Little is known about barriers to care experienced by Latino children with chronic kidney disease (CKD). We conducted a qualitative study with children with CKD and their families to elucidate conceptions about disease process, expression, and treatment; perceived access to care barriers; and potential for treatment non-adherence. Semi-structured interviews were conducted with 42 individuals from 28 family units treated for CKD in San Diego, California. Transcripts were analyzed by coding consensus, co-occurrence, and comparison. Latino patients cited pre-diagnosis barriers in accessing primary and subspecialty care not mentioned by non-Latino Whites. Whites described a pro-active style of interacting with the health care system not mentioned by Latinos. There were no differences apparent in reports of medication adherence, but both groups emphasized the importance of extended social networks in adhering to treatment regimens. Families' perspectives provide valuable information that can serve future studies and interventions for improving care for children with CKD.