Communication over language barriers in paediatric oncology care : a prerequisite for equity in care

Background: Out of Sweden's more than two million children under the age of eighteen, 23% have a foreign background, which means that every fourth child has a foreign background. We know that migration and the mixed population are reflected in all healthcare settings nationwide and are naturally also reflected in paediatric oncology care. Paediatric oncology care is a complex communication and information context in which effective and patient-safe communication between specialist nurses and other healthcare personnel and patients and their families is of particular importance in order to avoid the risk of miscommunication that could threaten patient-safe care. The use of professional interpreters is an essential tool for achieving adequate clinical practice with patients with limited Swedish proficiency. Despite the fact that research shows that using interpreters improves care and increases patient safety, research also shows that the use of interpreters is still limited and threatens children’s right to equity in care. Thus, there is a need to gain a deeper understanding of how communication over language barriers is performed and enabled in a paediatric oncology care context, and what factors limit the use of interpreters. Aims: The overall aim of this research project was to investigate communication over language barriers among healthcare personnel in paediatric oncology care and the use of interpreters and other communication tools to overcome language barriers. The specific aims were: a) exploring interpreters’ experiences of interpreting between healthcare personnel and patients/families with limited Swedish proficiency in paediatric oncology care (Study I), b) exploring interpreters’ perceived strategies in interpreted-mediated consultations between healthcare personnel and patients/families with limited Swedish proficiency in paediatric oncology care (Study II), c) developing and validating the Communication over Language Barriers questionnaire (CoLB-q) (Study III), and d) investigating communication over language barriers among healthcare personnel in paediatric oncology care (Study IV). Methods: Study I & II had an inductive exploratory qualitative design using semi-structured interviews with eleven interpreters with experiences of interpreting in paediatric oncology care. Study III was a methodology study in questionnaire development using cognitive and focus groups interviews, a pilot test and a test-retest, and Study IV was a national multisite cross-sectional survey using the CoLB-q. Key findings: The interpreters in Study I struggled to establish a meeting point of understanding including all parties in the interpreter mediated consultation. In Study II the key findings were that in order to carry the bilingual conversation; the interpreters used strategies clearly outside their assignment, as for example by alleviating and adapting words and phrases. Study III showed that the CoLB-q had sufficient content and face validity and, regarding reliability; the test-retest showed that the results were stable. In Study IV, almost 90% of the participants believed that the use of interpreters is important for the patients’ involvement in care and patient safety. Nevertheless, this belief did not translate into the actual use of professional interpreters among the healthcare personnel in paediatric oncology care. Conclusion: Language barriers negatively affect specialist nurses’ and other healthcare personnel’s ability to communicate effectively with their patients and thereby have a negative impact on the provision of appropriate, patient-safe and effective care. Due to its direct impact on health outcomes and equity in healthcare, high-quality interpreting should be a priority. Efficient professional interpretation is an important part of effective and patient-safe communication and a vital foundation for equity in healthcare