Abstract 824: Comparing experiences of Spanish and non-English/non-Spanish speaking parents of children with cancer
Authors: Stall Melanie , Winick Naomi , Kaye Erica 
Published: March 2024

Introduction: Children with cancer whose parents speak languages other than English (LOE) experience disparities including underrepresentation on clinical trials and decreased access to resources. Few studies in pediatric oncology have investigated the communication experiences of families who speak LOE, particularly for languages other than Spanish. The primary objective of this study was to characterize the experiences of parents of children with cancer who speak LOE.

Methods: Parents of children recently diagnosed with cancer who spoke LOE were enrolled concurrently in two cohorts, Spanish speaking and non-English/non-Spanish speaking. Semi-structured interviews were conducted about parent perceptions of medical care, communication and support from the medical team within 3 months of a new cancer diagnosis and 6-12 months post-diagnosis. Inductive content analysis was performed, with iterative transcript review and memo-writing informing the development of codes. Code frequency, temporal duration and distribution across language subtype were calculated and reported as descriptive statistics. Analysis was organized in MAXQDA, a mixed-methods data analysis software.

Results: Of the 28 parents enrolled, 20 spoke Spanish and 8 spoke other languages including Dari, Nepali, Karan, Cantonese, Chuukese and French. All parents completed first interviews and 14 have completed second interviews to date. All parents described challenges with interpretation, but difficulties were reported more often by non-Spanish speakers: 67% of non-Spanish speakers encountered interpreters who spoke a different dialect (vs. 35% of Spanish speakers), 33% had interactions where no interpreter was available via any modality (vs. 0%), and 75% of their children were asked to interpret by the medical team (vs. 12%). Additionally, non-Spanish speakers lacked access to written educational materials or hospital documents in their language and they were unable to build rapport with interpreters, whereas Spanish speakers described regular access to these resources. Spanish speakers also frequently reported incorrect interpretation that was recognized by providers who understood some Spanish. This was never reported by non-Spanish speakers as no medical team members spoke their languages.

Conclusion: Nearly 40% of the United States population speaks a language other than English or Spanish at home, yet their needs are significantly underrecognized and understudied. Our findings demonstrated that challenges related to interpretation are pervasive, and non-English/non-Spanish speakers may face greater difficulties. Overall, parents who speak LOE report receiving disparate care and deficient resources. An urgent need exists to provide equitable communication and resources, particularly for non-Spanish speakers who report significant obstacles in receipt of high-quality pediatric cancer care.

Citation Format: Melanie Stall, Naomi Winick, Erica Kaye. Comparing experiences of Spanish and non-English/non-Spanish speaking parents of children with cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 824.