School of Languages and Linguistics - Research Publications

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    The Rise of Pregnancy Apps and the Implications for Culturally and Linguistically Diverse Women: Narrative Review
    Hughson, J-AP ; Daly, JO ; Woodward-Kron, R ; Hajek, J ; Story, D (JMIR Publications, 2018-11-16)
    Background: Pregnancy apps are a booming global industry, with most pregnant women in high-income countries now using them. From the perspective of health care and health information provision, this is both encouraging and unsettling; the demand indicates a clear direction for the development of future resources, but it also underscores the importance of processes ensuring access, reliability, and quality control. Objective: This review provides an overview of current literature on pregnancy apps and aims at describing (1) the ways in which apps are used by women, in general, and by those of a culturally and linguistically diverse (CALD) background; (2) the utility and quality of information provided; and (3) areas where more research, development, and oversight are needed. Methods: We chose a narrative review methodology for the study and performed a structured literature search including studies published between 2012 and 2017. Searches were performed using MEDLINE, EMBASE, and CINAHL databases. Studies were identified for inclusion using two separate search criteria and strategies: (1) studies on pregnancy apps and pregnant women’s use of these apps and (2) studies on CALD pregnant women and their use of technology for accessing information on and services for pregnancy. Overall, we selected 38 studies. Results: We found that pregnancy apps were principally used to access pregnancy health and fetal development information. Data storage capability, Web-based features or personalized tools, and social media features were also popular app features sought by women. Lower rates of the pregnancy app uptake were indicated among lower-income and non-English-speaking women. Preliminary evidence indicates that a combination of technological, health literacy, and language issues may result in lower uptake of pregnancy apps by these groups; however, further investigation is required. A marked limitation of the health app industry is lack of regulation in a commercially dominated field, making it difficult for users to assess the reliability of the information being presented. Health professionals and users alike indicate that given the choice, they would prefer using pregnancy apps that are relevant to their local health care context and come from a trusted source. Evidence indicates a need for greater health professional and institutional engagement in the app development, as well as awareness of and guidance for women’s use of these resources. Conclusions: This is the first review of pregnancy app use, types of information provided, and features preferred by pregnant women in general and by those of a CALD background in particular. It indicates the demand for access to accurate information that is relevant to users, their community, and their associated health services. Given the popularity of pregnancy apps, such apps have enormous potential to be used for the provision of accurate, evidence-based health information.
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    Culturally and linguistically diverse populations in medical research: perceptions and experiences of older Italians, their families, ethics administrators and researchers
    Woodward-Kron, R ; Hughson, J-A ; Parker, A ; Bresin, A ; Hajek, J ; Knoch, U ; Phan, TD ; Story, D (SAGE PUBLICATIONS INC, 2016)
    BACKGROUND: Low-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 METHODS: A 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. RESULTS: Themes 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. CONCLUSIONS: Our 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.
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    A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials
    Hughson, J-A ; Woodward-Kron, R ; Parker, A ; Hajek, J ; Bresin, A ; Knoch, U ; Tuong, P ; Story, D (BMC, 2016-05-26)
    The under-representation of culturally and linguistically diverse participants in clinical trials is an ongoing concern for medical researchers and the community. The aim of this review is to examine the complex issue of recruiting culturally and linguistically diverse (CALD) older people to medical research and to examine responses to these issues. The review focuses on (1) trends in the existing literature on barriers to and strategies for recruiting CALD and older people to clinical research, (2) issues with informed consent for CALD populations, and (3) the efficacy of innovative approaches, including approaches incorporating multimedia in research and consent processes. The literature indicates that predominant barriers to greater involvement of CALD patients in clinical trials are communication, including literacy and health literacy considerations; English language competence; and cultural factors in the research setting such as mistrust of consent processes, as well as considerable practical and logistical barriers, including mobility considerations. Some evidence exists that incorporating multimedia resources into the informed consent process can improve patient understanding and is preferred by patients, yet these findings are inconclusive. A multi-methodological approach, including the use of culturally and linguistically sensitive multimedia tools, may help address the issue of low inclusion of CALD groups in clinical research. Researcher education needs to be taken into account to address preconceptions about CALD resistance to research participation and to raise awareness of cultural concerns in regard to research participation.