Participatory Research Methods for Investigating Digital Health Literacy

Abstract

Digital technologies and pre/peri-natal apps are transforming maternity care as women use consumer-oriented communications technologies to obtain information and support. These technologies have introduced a new set of politics into health communication, as information asymmetries embedded into apps and their platforms disrupt traditional concepts of health literacy and consumer participation that have been key concepts in community health advocacy. The development of cultural safety and cultural competence has been one impetus for health professionals to adapt their models of care to address information and support gaps for service users from culturally and linguistically diverse (CALD) backgrounds, by asking clinicians to address the operations of power at work in their cultural norms of practice. However, consumer apps appropriate the cultural interface that has historically been managed by clinicians, raising questions about how participatory these technologies can be for women from marginalised groups. Given the black-boxed nature of many health technologies that by design do not enable adequate description by end users, new modes of research are necessary to both stimulate dialogue on health literacy and health participation as a part of a discovery process around CALD women’s experiences and perceptions.

‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children

“…These aforementioned studies in the field of autism research have described similar benefits reported in other CALD and non-CALD co-produced studies (De las Nueces et al, 2012;De Souza et al, 2021;Kildea et al, 2009;Wild et al, 2021) namely more effective dissemination of community messages, improved trust and ongoing collaboration between researchers and community members and increased skills and expertise of all participants. For co-produced CALD autism research, other benefits have also been reportedbenefits that extend beyond the research itself.…”

“…Previous studies with marginalised communities have similarly reported how community involvement meaningfully influenced community dissemination – both in delivery and message (Kildea et al, 2009). The proposed dissemination plan suggested by parents (brief, easily shareable flyers) ensured that communities could access and share findings about the home–school partnerships study on social media more easily than the research team's initial suggestion (De las Nueces et al, 2012; De Souza et al, 2021; Wild et al, 2021). The suggested inclusion of FAQs and information debunking community-specific myths about autism, alongside the key research fundings, was also intended to serve as a useful mechanism to address autism stigma in their communities (Ha & Whittaker, 2022; Liu & Fisher, 2017).…”

User types, psycho-social effects and societal trends related to the use of consumer health technologies

“…A more direct and upstream approach to mitigating potential negative effects could be participative development of CHTs, involving diverse user types and including minority and disadvantaged groups. 15 , 110 To give just two very compelling examples, fitness apps may be developed for people with paraplegia, as they are excluded by current fitness apps both in terms of the exercises they propose and the quantitative activity goals they predefine. 111 In a participatory study with male workers, the design and functionality requirements for mental health apps were studied in order to find ways to engage this group of people that very often see mental disorders as a stigma.…”

Centering Digital Health Equity During Technology Innovation: Protocol for a Comprehensive Scoping Review of Evidence-Based Tools and Approaches

“…Evidence shows that priority communities may not have equal access to the underlying technologies that support DHTs, such as mobile phones, computers, and internet services [ 9 - 14 ]. Moreover, communities with culturally or linguistically diverse backgrounds are less likely to have access to culturally appropriate DHTs [ 15 , 16 ]. This was a prominent experience during the COVID-19 pandemic response and vaccination rollout over 2020-2022 [ 17 , 18 ] and demonstrates a need for cultural considerations in health messaging and technologies.…”