The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer

• Published in: Pediatric blood & cancer Vol. 63; no. 12; pp. 2173 - 2180
• Main Authors: Zamora, Eduardo R., Kaul, Sapna, Kirchhoff, Anne C., Gwilliam, Vannina, Jimenez, Ornella A., Morreall, Deborah K., Montenegro, Roberto E., Kinney, Anita Y., Fluchel, Mark N.
• Format: Journal Article
• Language: English
• Published: United States Blackwell Publishing Ltd 01.12.2016; Wiley Subscription Services, Inc
• Subjects: Adolescent; Adult; Caregivers; Child; Child, Preschool; Clinical Trials as Topic; Communication; communication barriers; Cross-Sectional Studies; decision-making; Emigration and Immigration; Female; Hematology; Humans; Infant; Infant, Newborn; Language; language barriers; Latino; Male; Neoplasms - therapy; Oncology; Patient Education as Topic; Patient Satisfaction; Pediatrics; Quality of Health Care; caregivers; language barriers; decision-making; Latino; communication barriers
• ISSN: 1545-5009; 1545-5017; 1545-5017
• DOI: 10.1002/pbc.26150

Background An increasing proportion of pediatric cancer patients in the United States are Latino and many have Spanish‐speaking immigrant parents with limited English proficiency (LEP). Little is known about how language or undocumented immigration status impacts their care experience. Procedure A cross‐sectional survey was administered to English (N = 310) and Spanish‐speaking LEP (N = 56) caregivers of pediatric cancer patients. To assess differences in healthcare experiences between the language groups, t‐tests and chi‐square statistics were used. Multivariable logistic regression evaluated associations between primary language and knowledge of clinical trial status. Results Spanish‐speaking caregivers were more likely to report higher rates of quitting or changing jobs as a direct result of their child's cancer, and their children were more likely to experience a delay in education. Although Spanish‐speaking caregivers reported higher satisfaction with care, 32% reported feeling that their child would have received better care if English was their primary language. Spanish‐speaking caregivers were more likely to incorrectly identify whether their child was on a clinical trial compared with English‐speaking caregivers. The majority of Spanish‐speaking caregivers reported at least one undocumented caregiver in the household and 11% of them avoided or delayed medical care for their child due to concerns over their undocumented immigration status. Conclusions Language barriers and undocumented immigration status may negatively impact the quality of informed decision‐making and the care experience for Spanish‐speaking LEP caregivers of pediatric cancer patients. These families may benefit from culturally appropriate Spanish language resources to improve communication and open a dialogue regarding undocumented immigration status.