title: The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Utah Department of Health, Salt Lake City, Utah. ezamora@utah.gov.
authors.forename: Eduardo R
authors.initials: ER
authors.lastname: Zamora
authors.affiliation: Department of Preventive Medicine and Community Health, University of Texas Medical Branch, Galveston, Texas.
authors.forename: Sapna
authors.initials: S
authors.lastname: Kaul
authors.affiliation: Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.|Division of Pediatric Hematology/Oncology, University of Utah School of Medicine, Salt Lake City, Utah.
authors.forename: Anne C
authors.initials: AC
authors.lastname: Kirchhoff
authors.affiliation: Primary Children's Hospital, Salt Lake City, Utah.
authors.forename: Vannina
authors.initials: V
authors.lastname: Gwilliam
authors.affiliation: Colorado School of Public Health, Aurora, Colorado.
authors.forename: Ornella A
authors.initials: OA
authors.lastname: Jimenez
authors.affiliation: Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.
authors.forename: Deborah K
authors.initials: DK
authors.lastname: Morreall
authors.affiliation: Seattle Children's Hospital, University of Washington, Seattle, Washington.
authors.forename: Roberto E
authors.initials: RE
authors.lastname: Montenegro
authors.affiliation: University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico.|Department of Internal Medicine, University of New Mexico, Albuquerque, New Mexico.
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
authors.affiliation: Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.|Division of Pediatric Hematology/Oncology, University of Utah School of Medicine, Salt Lake City, Utah.
authors.forename: Mark N
authors.initials: MN
authors.lastname: Fluchel
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic; D003142:Communication; D003430:Cross-Sectional Studies; D004641:Emigration and Immigration; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007802:Language; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011787:Quality of Health Care
keywords: Latino; caregivers; communication barriers; decision-making; language barriers