Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers

Abstract

BackgroundLow-participation of culturally and linguistically diverse (CALD) patients in medical research remains a problem in migrant and refugee destination countries such as Australia. The aims of this study were to explore i) CALD persons’ perceptions and experiences of the medical system and medical research, in this case, older Italian Australians; and ii) the views of research professionals on CALD patient participation in medical research.Design and MethodsA qualitative study was conducted in Melbourne, Australia, in 2015 utilising in-depth interviews and focus groups with four stakeholder groups: older Italian Australians (n=21); adult children of older Italian Australians (n=10); hospital Human Research Ethics Committee administrators (n=4); and clinical researchers (n=4). The data were analysed for content and thematic analysis.ResultsThemes for the CALD and family group were getting by in medical interactions; receptivity to medical research: testing the waters; and, receptivity to technology for support: passive versus active. Themes for the researcher and HREC groups about CALD patient participation in research were: exclusion; cultural factors; and e-consent.ConclusionsOur findings from four stakeholder perspectives and experiences confirm that there were considerable cultural, linguistic, and resourcing barriers hindering the participation of older Italian-Australians in medical research. Furthermore, our findings showed that in this study setting there were few enabling strategies in place to address these barriers despite the national ethics guidelines for equitable participation in research. The findings informed the creation of a multimedia tool whose purpose is to address and improve representation of CALD groups in clinical research.Significance for public healthMany people from culturally and linguistically diverse (CALD) backgrounds remain excluded from medical research such as clinical trials due to a range of language and cultural factors that can be amplified when this population is ageing. This exclusion has implications for the ability of CALD populations to benefit from participating in medical research and for applying research findings to CALD populations. It is essential to develop and implement strategies to include CALD communities in medical research and to uphold the ethical obligation of obtaining informed consent to research. The findings of this study have guided the development of a tablet-based resource which can be used in clinical and community contexts to raise awareness about the purpose of medical research. The resource has been carefully designed to be appropriate for participants' cultural background as well as their preferred language and literacy level. Such a resource has potential to address some of the cultural and linguistic barriers to clinical trial participation of CALD populations.

Facilitators and barriers of participation in a longitudinal research on migrant families in Badalona (Spain): A qualitative approach

“…Most participants were willing to participate and reported a wide range of benefits—as reported in other studies—for themselves, their families (Evans et al., ; Woodward‐Kron et al., ), the whole society (Ford et al., ; Gadegbeku et al., ), the health system and science (Ford et al., ). Previous studies showed that perceiving the direct benefit of research participation enhances recruitment (Ejiogu et al., ), while the lack of benefit reduces the motivation to participate (Goff et al., ).…”

“…The interview model used emphasises experience and meaning (Seidman, ) with the aim of exploring subjective meanings. Discussion groups may increase the feeling of safety by gathering a group of people of the same origin (Woodward‐Kron et al., ), and allowed for clarification of shared cultural understanding and collective identity (Barbour, ; Kitzinger, ).…”

“…In migrant populations, a range of language, cultural and socioeconomic factors such as fear and distrust in research and government institutions; lack of interest, personal benefit or knowledge about research; intrusive nature of survey questions; issues of confidentiality and racial profiling; economic and time constraints; and transportation and mobility issues; make identification, participation and re‐contacting more difficult than for native‐born populations. These factors collaborate to maintain migrant populations under‐represented and excluded in health research (Ejiogu et al., ; Evans et al., ; Ford et al., ; Goff et al., ; Jones & Jablonski, ; Katigbak et al., ; Woodward‐Kron et al., ).…”

Acceptability of opt‐out consent in a hospital patient population

“…These findings are in contrast to the findings in a much smaller study of Woodward-Kron et al, who analysed attitudes towards medical research in 21 older Italian-Australians and found 'few indicated willingness to participate in medical research'. 19 This study has several limitations. Possible response bias, with those completing the survey demonstrating a willingness to participate in research, cannot be excluded; however, a completion rate of 91% suggests this may be minor.…”

“…This was paralleled by support in those who were illiterate, a cohort which has not been explored in previous studies. These findings are in contrast to the findings in a much smaller study of Woodward‐Kron et al ., who analysed attitudes towards medical research in 21 older Italian‐Australians and found ‘few indicated willingness to participate in medical research’ …”