Family Caregiver Marginalization is Associated With Decreased Primary and Subspecialty Asthma Care in Head Start Children

BACKGROUND: Urban minority children are at risk for poor asthma outcomes and might not receive appropriate primary or subspecialty care. We hypothesized that preschool children with asthma whose caregivers reported more barriers to care would be less likely to have seen their primary care provider (PCP) or an asthma subspecialist and more likely to have had a recent emergency department (ED) visit for asthma. METHODS: The Barriers to Care Questionnaire (BCQ) is used to measure expectations, knowledge, marginalization, pragmatics, and skills. We assessed asthma control using the Test for Respiratory and Asthma Control in Kids and these outcomes: PCP visits for asthma in the past 6 months, subspecialty care (allergist or pulmonologist) in the past 2 years, and ED visits in the past 3 months. RESULTS: Three hundred ninety-five caregivers (96% African-American, 82% low-income, 96% Medicaid) completed the BCQ. Sixty percent (n = 236) of children had uncontrolled asthma, 86% had seen a PCP, 23% had seen a subspecialist, and 29% had an ED visit. Barriers related to marginalization were associated with decreased likelihood of PCP (odds ratio [OR], 0.95; P = .014) and subspecialty visits (OR, 0.92; P = .019). Overall BCQ score was associated with decreased likelihood of subspecialty care (OR, 0.98; P = .027). Barriers related to expectations, knowledge, pragmatics, and skills were not associated with any of the care outcomes. CONCLUSIONS: Among low-income, predominantly African-American preschool children with asthma, primary and subspecialty care were less likely if caregivers reported past negative experiences with the health care system (marginalization). Clinicians who serve at-risk populations should be sensitive to families' past experiences and should consider designing interventions to target the most commonly reported barriers.