Experiences with health information among caregivers of people with cancer from culturally and linguistically diverse backgrounds: A qualitative study

Abstract

Abstract Objectives Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This study aimed to explore experiences with cancer-related information among caregivers of people with cancer from CALD communities. Methods Semi-structured interviews were conducted with 24 caregivers from Arabic and Chinese backgrounds (12 in each group). Thematic analysis was used to analyze data. Results Participants’ mean age was 40.6 years, and most were female (83%). Six themes were identified: (a) lack of information to meet their needs; (b) challenges understanding cancer- and care-related information; (c) proactivity to make sense of, and understand information; (d) interpreting information: the role formal and informal services; and (e) engaging with health providers to access information. Conclusions Caregivers identified significant language and communication barriers impacting their capacity to understand cancer-related information given by providers and they invested personal effort clarifying information. The importance of access to formal interpreter services, even when caregivers and care recipients seem proficient in English, was highlighted. Cultural sensitivity of providers when discussing a cancer diagnosis and treatment was also identified as an important consideration. Significance of results Culturally tailored outreach programs designed to provide key cancer-related information which are accessible to CALD caregivers have the potential to improve the health outcomes of both caregivers and care recipients.