ABSTRACT
People from culturally and linguistically diverse backgrounds (CALD) remain underrepresented in clinical research due to a range of language, literacy, and cultural factors such as the literacy needed to understand lengthy, paper-based consent forms. Exclusion of these populations from medical research contributes to health inequalities for migrant groups; it also limits the generalisability of research findings. A methodology for developing inclusive and effective recruitment processes needs to be not only informed by culturally and linguistically appropriate models of translation but also adhere to ethical principles for medical research and support the dynamic needs of researchers conducting clinical trials.
This chapter reports on research to develop and implement mobile health (mHealth) ethics and medical research information for culturally and linguistically diverse (CALD) patients. The prototype, Let’s talk medical research/ Parliamo di ricerca medica, is an interactive tablet delivered web app, providing bilingual audio-visual research information for Italian patients and their families, including informed consent processes using digital communications. A mixed-methods, proof of concept study into the acceptability, feasibility, and utility of the prototype resource was conducted in Melbourne, Australia, with patients at an inner-city hospital, and with community-based older Italian-Australians. From the field note findings about barriers to recruitment in the community setting, the emergent themes were environmental factors, engagement versus resistance, and alignment/ misalignment of values. The prototype web app found some acceptance with the older Italian speaking participants. Wi-Fi connectivity and noisy hospital environments presented problems when showing audio-visual material. Once participants viewed the resource, many viewed the content favourably and were engaged. The findings suggest that while communication technologies have potential to positively impact recruitment of older CALD people, attitudinal and other sociocultural factors remain a major barrier beside language competence.
