Translating Behind the Scenes An Observational Study on Language Barriers in Childhood Cancer Care

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Published: Dec 23, 2025
Keywords:
observational study, language barriers, childhood cancer care, classic grounded theory, translating behind the scenes

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Elisabet Tiselius
Stockholm University
https://orcid.org/0000-0002-2285-6729
Johanna Granhagen Jungner
Karolinska Institutet
https://orcid.org/0000-0003-4103-6539
Pernilla Pergert
Uppsala University, Karolinska Institutet
https://orcid.org/0000-0002-4210-855X

Abstract

Language barriers impact patient’s and families’ involvement in childhood cancer care, risking the quality of care and patient safety. Despite several studies in the field, few focus on the patient/family perspective. The aim of this observational study was to explore social patterns of communication across language barriers, and to explore how children and families dealt with their main concern. Through the lens of classic grounded theory, we collected and analysed data from observations and interviews conducted at two Swedish childhood cancer centres. Translating behind the scenes is used to resolve the main concern of overcoming language barriers. The causes are varying proficiency in the languages of the conversation, and being uninitiated to the setting, and in a context of respecting the importance of the initiated people. Consequences include being left out of the communication and staying uninitiated. We argue that this leads to ineffective communication and lack of support for patients and their families, which ultimately threatens the patient safety.

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How to Cite
Tiselius, E., Granhagen Jungner, J., & Pergert, P. (2025). Translating Behind the Scenes: An Observational Study on Language Barriers in Childhood Cancer Care. Grounded Theory Review, 25(1), 7–30. Retrieved from https://groundedtheoryreview.org/index.php/gtr/article/view/309
Issue
Vol. 25 No. 1 (2025)
Section
Articles

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Author Biographies

Elisabet Tiselius, Stockholm University

Dr Tiselius is an associate professor at Stockholm University where she teaches interpreting. She has been a Swedish state authorized public service interpreter for some 25 years. Her research interests focus on interpreters’ competence and expertise, but also on communication across language barriers in highly specialized paediatric care. After completing her doctoral thesis in Interpreting Studies in 2013, she was a postdoc at Karolinska Institutet (KI) in Pergert research group and used grounded theory to study interpreters and patients in highly specialized paediatric care. Dr Tiselius heads Stockholm Process Research in Interpreting and Translation group (SPRINT) and is collaborating researcher in the research group on Paediatric Healthcare Sciences group at KI.

Johanna Granhagen Jungner, Karolinska Institutet

Dr Granhagen Jungner is an Assistant Professor at the Department of Women's and Children's Health at Karolinska Institutet (KI). She earned her PhD in 2018, focusing on communication across language barriers in paediatric oncology care. With a background as a specialist nurse in pain management, Dr Granhagen Jungner has extensive clinical experience from Astrid Lindgren Children's Hospital, Karolinska University Hospital. Her research interests include patient-reported experiences in paediatric healthcare, particularly in rheumatology. She is also actively involved in advanced-level education and has contributed significantly to the development of curricula and educational programs. Dr Granhagen Jungner’s research aims to improve healthcare communication and patient care for children across diverse cultural and linguistic backgrounds.

Pernilla Pergert, Uppsala University, Karolinska Institutet

Dr Pergert is Senior Lecturer in caring science, with a focus on care ethics at the Centre for Research Ethics & Bioethics, Uppsala University and Associate professor (docent) of Paediatric Care Science affiliated to Karolinska Institutet (KI). Dr Pergert performs research and education in intercultural care and clinical ethics. She used classic grounded theory in her dissertation about “Façading in transcultural relationships”. Dr Pergert has continued using and teaching classic grounded theory. Furthermore, she is a paediatric/adolescent nurse specialist with more than 13 years of clinical experience from paediatric cancer care at Astrid Lindgren Children's Hospital, Karolinska University Hospital, and even longer experience of working with clinical ethics support.

References

Boland, L., Graham, I. D., Légaré, F., Lewis, K., Jull, J., Shephard, A., Lawson, M. L., Davis, A., Yameogo, A., & Stacey, D. (2019). Barriers and facilitators of pediatric shared decision-making: A systematic review. Implementation science, 14(1), 7. https://doi.org/10.1186/s13012-018-0851-5

Bray, L., Appleton, V., & Sharpe, A. (2019). ‘If I knew what was going to happen, it wouldn’t worry me so much’: Children’s, parents’ and health professionals’ perspectives on information for children undergoing a procedure. Journal of Child Health Care, 23(4), 626–638. https://doi.org/10.1177/1367493519870654

Choe, A. Y., Unaka, N. I., Schondelmeyer, A. C., Raglin Bignall, W. J., Vilvens, H. L., & Thomson, J. E. (2019). Inpatient communication barriers and drivers when caring for limited English proficiency children. Journal of Hospital Medicine, 14(10), 607–613. https://doi.org/10.12788/jhm.3240.

Glaser, B. G. (1998). Doing grounded theory: Issues and discussions. Sociology Press.

Glaser, B. G. (1978). Advances in the methodology of grounded theory: Theoretical sensitivity. University of California.

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Routledge.

Goenka, P. K. (2016). Lost in translation: Impact of language barriers on children's healthcare. Current Opinion in Pediatrics, 28(5), 659–666. https://doi.org/10.1097/MOP.0000000000000404

Granhagen Jungner, J., Tiselius, E., Blomgren, K., Lützén, K., & Pergert, P. (2019). Language barriers and the use of professional interpreters: A national multisite cross-sectional survey in pediatric oncology care. Acta Oncologica, 58(7), 1015–1020. https://doi.org/10.1080/0284186X.2019.1594362

Granhagen Jungner, J., Tiselius, E., & Pergert, P. (2021). Reasons for not using interpreters to secure patient-safe communication–A national cross-sectional study in paediatric oncology. Patient Education and Counseling, 104(8), 1985–1992. https://doi.org/10.1016/j.pec.2021.01.017

Iqbal, H., & Crafter, S. (2023). Child language brokering in healthcare: Exploring the intersection of power and age in mediation practices. Journal of Child and Family Studies 32, 586–597. https://doi.org/10.1007/s10826-022-02376-0

Jaeger, F.N., Pellaud, N., Laville, B., & Klauser, P. (2019). Barriers to and solutions for addressing insufficient professional interpreter use in primary healthcare. BMC Health Services Research 19, 753. https://doi.org/10.1186/s12913-019-4628-6

Joseph, M. M., Mahajan, P., Snow, S. K., Ku, B. C., Saidinejad, M. (2022). Optimizing pediatric patient safety in the emergency care setting. Pediatrics, 150(5), e2022059674. https://doi.org/10.1542/peds.2022-059674

Karliner, L. S., Jacobs, E. A., Chen, A. H., & Mutha, S. (2007). Do professional interpreters improve clinical care for patients with limited English proficiency? A systematic review of the literature. Health Services Research, 42(2), 727–754. https://doi.org/10.1111/j.1475-6773.2006.00629.x

Mayer, B. (2019). A review of the literature on community resilience and disaster recovery. Current Environmental Health Reports, 6(3), 167–173. https://doi.org/10.1007/s40572-019-00239-3. PMID: 31267349.

Pergert, P. (2017). Facading in transcultural interactions: Examples from pediatric cancer care in Sweden. Psycho‐Oncology, 26(7), 1013–1018. https://doi.org/10.1002/pon.4274

Pergert, P., Ekblad, S., Enskär, K., & Björk, O. (2008a). Protecting professional composure in transcultural pediatric nursing. Qualitative health research, 18(5), 647–657. https://doi.org/10.1177/1049732308315736

Pergert, P., Ekblad, S., Enskär, K., & Björk, O. (2008b). Bridging obstacles to transcultural caring relationships--tools discovered through interviews with staff in pediatric oncology care. European Journal of Oncology Nursing, 12(1), 35–43. https://doi.org/10.1016/j.ejon.2007.07.006

Pergert, P., Ekblad, S., Enskär, K., & Björk, O. (2007). Obstacles to transcultural caring relationships: experiences of health care staff in pediatric oncology. Journal Pediatric Oncology Nursing, 24(6), 314–328. https://doi.org/10.1177/1043454207308066

Robles, J. M., Ruiz, J., Correa, R., Dinescu-Munoz N., Patel C., Noyd D., Alvarez M., Frost E., Ledbetter, L., & LeBlanc, T. W. (2024). The impact of language discordance on pediatric cancer care outcomes: A systematic review. Pediatric Blood & Cancer, 71(12), e31338. https://doi.org/10.1002/pbc.31338

Ruiz, J., Robles, J. M., Sánchez, L. M., Khan, A., Lu, A. D., Marjerrison, S., Morales La Madrid, A., & Aristizabal, P. (2025). Achieving language justice in pediatric hematology-oncology: A multinational perspective for language-concordant equitable patient- and family-centered care and research inclusion. Pediatric Blood & Cancer, 72(4), e31521. https://doi.org/10.1002/pbc.31521

Sandgren, A. (2012). Deciphering Unwritten Rules. Grounded Theory Review, 11(2), 9–20. https://groundedtheoryreview.org/index.php/gtr/article/view/310

Tiselius, E. (2022). Swedish interpreters’ roles and identities – How legislation and the surrounding world contribute to creation and disruption of work environment and education. The Translator 28(2), 178–195. https://doi.org/10.1080/13556509.2022.2104664

Wadensjö, C. (2020). Involvement, trust and topic control in interpreter-mediated healthcare encounters. Communication & medicine, 15(2), 165–176. https://doi.org/10.3138/9781800502994-006

Williams, A., Oulton, K., Sell, D., Wray, J. (2018). Healthcare professional and interpreter perspectives on working with and caring for non-english speaking families in a tertiary paediatric healthcare setting. Ethnicity & Health, 23(7), 767–780. https://doi.org/10.1080/13557858.2017.1294662

World Medical Association. 2024. WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Participants. https://www.wma.net/policies-post/wma-declaration-of-helsinki/