Parent-identified barriers to pediatric health care: a process-oriented model

To further understand barriers to care as experienced by health care consumers, and to demonstrate the importance of conjoining qualitative and quantitative health services research.

Transcripts from focus groups conducted in San Diego with English- and Spanish-speaking parents of children with special health care needs.

Participants were asked about the barriers to care they had experienced or perceived, and their strategies for overcoming these barriers. Using elementary anthropological discourse analysis techniques, a process-based conceptual model of the parent experience was devised.

The analysis revealed a parent-motivated model of barriers to care that enriched our understanding of quantitative findings regarding the population from which the focus group sample was drawn. Parent-identified barriers were grouped into the following six temporally and spatially sequenced categories: necessary skills and prerequisites for gaining access to the system; realizing access once it is gained; front office experiences; interactions with physicians; system arbitrariness and fragmentation; outcomes that affect future interaction with the system. Key to the successful navigation of the system was parents' functional biomedical acculturation; this construct likens the biomedical health services system to a cultural system within which all parents/patients must learn to function competently.

Qualitative analysis of focus group data enabled a deeper understanding of barriers to care--one that went beyond the traditional association of marker variables with poor outcomes ("what") to reveal an understanding of the processes by which parents experience the health care system ("how,""why") and by which disparities may arise. Development of such process-oriented models furthers the provision of patient-centered care and the creation of interventions, programs, and curricula to enhance such care. Qualitative discourse analysis, for example using this project's widely applicable protocol for generating experientially based models, can enhance our knowledge of the parent/patient experience and aid in the development of more powerful conceptualizations of key health care constructs.