Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

A qualitative examination of the information needs of caregivers of people with cancer from culturally and linguistically diverse backgrounds (#500)

Eva YN Yuen 1 2 , Megan Hale 1 3 4 , Carlene Wilson 3 4 5
  1. Monash Health, Clayton, VIC
  2. School of Nursing and Midwifery, Quality and Patient Safety, Institute for Health Transformation, Deakin University, Burwood, VIC, Australia
  3. School of Psychology and Public Health, La Trobe University, Bundoora, VIC, Australia
  4. Psycho-Oncology Research Unit, ONJ Centre, Austin Health, Heidelberg, VIC, Australia
  5. Melbourne School of Population and Global Health, Centre for Epidemiology and Biostatistics, University of Melbourne, Parkville, VIC, Australia

Background and Aims: Informal caregivers play a critical role in providing support for people diagnosed with cancer (1), and adequate access to key cancer-related information has been associated with better health outcomes for care recipients and caregivers (2, 3). Despite this, caregivers often report high unmet information needs, and those from culturally and linguistically diverse (CALD) backgrounds have reported higher unmet needs compared to their English-speaking counterparts (4). Few studies have explored key determinants of information needs among cancer caregivers from CALD communities, and their satisfaction with information received. Consequently, we examined experiences with cancer-related information among CALD cancer caregivers.

Methods: Arabic and Chinese cancer caregivers (12 in each group) across Australia participated in semi-structured interviews. Data were analysed using thematic analysis.  

Results: Participants had a mean age of 40.6 years, and the majority were female (83%). Five themes emerged: (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: Significant language and communication barriers were identified that impacted caregivers’ capacity to understand cancer-related information given by providers. Caregivers reported that they invested significant personal effort to understand information. Even for those with adequate English-proficiency, the importance of availability and access to formal interpreter services for caregivers and care recipients was highlighted. The importance of provider cultural sensitivity when having cancer-related discussions was also highlighted. Ensuring culturally tailored strategies are adopted to provide cancer-related information for CALD caregivers has the potential to improve the health outcomes of both caregivers and care recipients.