A qualitative inquiry of communication based barriers to the diagnosis of pediatric cancer: Perceptions of primarily Spanish-speaking caregivers

Abstract

Background: Primarily Spanish-speaking cancer patients and caregivers often experience non-congruence with healthcare providers about beliefs, values, and knowledge of cancer. Our goal was to describe how communication related to the diagnosis of cancer was influenced by culture and language among primarily Spanish-speaking caregivers of pediatric cancer patients.

Methods: Caregivers participated in three focus groups about their experiences with their child's diagnosis, communication issues, and understanding of their child's diagnosis and treatment plan. Focus groups were audio recorded, transcribed, and qualitatively analyzed using interpretive description.

Results: Three themes emerged: 1) Negative experiences and barriers during the cancer diagnosis and treatment, 2) Miscommunication and system complexity, and 3) Language barriers throughout the diagnostic process. Due to barriers and negative experiences, some caregivers reported that their child's diagnosis was delayed, that providers sometimes used dehumanizing language, and that they were confused about diagnostic testing and treatment.

Conclusion: Cultural and linguistic disparities in pediatric oncology must be systematically addressed at the provider, clinic, and system level.

Practice implications: High-quality cancer care delivered by oncologists and cancer care teams should include cultural humility when discussing the cancer diagnosis and prognosis.

Keywords: Cancer caregivers; Culture; Language; Pediatric oncology.