1. bookVolume 8 (2021): Issue 1 (January 2021)
    Health, Media and Participation
Journal Details
License
Format
Journal
First Published
01 Nov 2014
Publication timeframe
2 times per year
Languages
English
access type Open Access

Participatory Research Methods for Investigating Digital Health Literacy

Published Online: 03 Apr 2021
Page range: 1 - 17
Journal Details
License
Format
Journal
First Published
01 Nov 2014
Publication timeframe
2 times per year
Languages
English
Abstract

DIGITAL TECHNOLOGIES AND PRE/PERI-NATAL APPS ARE TRANSFORMING MATERNITY CARE AS WOMEN USE COMMUNICATIONS TECHNOLOGIES TO OBTAIN INFORMATION AND SUPPORT. WOMEN FROM CULTURALLY AND LINGUISTICALLY DIVERSE (CALD) BACKGROUNDS EXPERIENCE INFORMATION AND SUPPORT GAPS, HOWEVER, RESEARCH ON NEW HEALTH COMMUNICATIONS HAS RARELY ENGAGED WITH THIS GROUP, RAISING CONCERNS ABOUT THE APPLICABILITY OF THESE TECHNOLOGIES WITH HIGHLY DIVERSE COMMUNITIES. THE GOAL OF THIS PILOT STUDY LOCATED IN IN NORTH RICHMOND, A CULTURALLY DIVERSE NEIGHBOURHOOD OF MELBOURNE, WAS TO TEST THE VALUE OF “DESIGN PROBES” IN ENGAGING WOMEN FROM CALD BACKGROUNDS IN DISCUSSIONS ABOUT HEALTH TRACKING AND WEARABLE HEALTH TECHNOLOGIES IN THE CONTEXT OF PREGNANCY AND PARENTING. THIS STUDY FOUND THAT DESIGN PROBES WERE EFFECTIVE IN ENABLING PARTICIPANTS TO PARTICIPATE IN EXTENDED DISCUSSIONS ON THE IMPLICATIONS OF DIGITAL HEALTH TECHNOLOGIES. PARTICIPANTS WERE AWARE OF THE WAYS THAT HEALTH INFORMATION SERVED THE NEEDS OF MULTIPLE ENTITIES, AND SOUGHT MORE CONTROL OVER WHERE AND WITH WHOM THEIR DATA WAS SHARED WITH.

Keywords

Ajana, B. (2017). Digital health and the biopolitics of the Quantified Self. Digital Health, 3, 2055207616689509. https://doi.org/10.1177/2055207616689509 Search in Google Scholar

Australian Bureau of Statistics. (2006). Health Literacy Australia, (No. 4233.0). Australian Bureau of Statistics. http://www.ausstats.abs.gov.au/Ausstats/subscriber.nsf/0/73ED158C6B14BB5ECA2574720011AB83/$File/42330_2006.pdf Search in Google Scholar

Baldassar, L., Nedelcu, M., Merla, L., & Wilding, R. (2016). ICT-based co-presence in transnational families and communities: Challenging the premise of face-to-face proximity in sustaining relationships. Global Networks-A Journal of Transnational Affairs, 16(2), 133–144.http://onlinelibrary.wiley.com/doi/10.1111/glob.12108/pdf Search in Google Scholar

Bobashev, G. (2014). myEpi. Epidemiology of One. Frontiers in Public Health, 2(97), 4. https://doi.org/10.3389/fpubh.2014.00097 Search in Google Scholar

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa Search in Google Scholar

Butt, D., McQuire, S., & Papastergiadis, N. (2016). Platforms and public participation. Continuum, 30(6), 734–743. https://doi.org/10.1080/10304312.2016.1231777 Search in Google Scholar

Carissolii, C., Villani, D., & Riva, G. (2016). An emerging model of pregnancy care: The introduction of new technologies in maternal wellbeing. In D. Villani (Ed.), Integrating Technology in Positive Psychology Practice (pp. 162–193). IGI Global. https://market.android.com/details?id=book-OnqmCwAAQBAJ Search in Google Scholar

City of Yarra. (2011). Richmond North Neighbourhood Profile. City of Yarra. https://profile.id.com.au/yarra/about?WebID=190 Search in Google Scholar

Collins, S. A., Currie, L. M., Bakken, S., Vawdrey, D. K., & Stone, P. W. (2012). Health literacy screening instruments for eHealth applications: A systematic review. Journal of Biomedical Informatics, 45(3), 598–607. https://doi.org/10.1016/j.jbi.2012.04.001 Search in Google Scholar

Crawford, K., Lingel, J., & Karppi, T. (2015). Our metrics, ourselves: A hundred years of self-tracking from the weight scale to the wrist wearabledevice. European Journal of Cultural Studies, 18(4-5), 479–496. https://doi.org/10.1177/1367549415584857 Search in Google Scholar

Crook, B., Stephens, K. K., Pastorek, A. E., Mackert, M., & Donovan, E. E. (2016). Sharing health information and influencing behavioral intentions: The role of health literacy, information overload, and the internet in the diffusion of healthy heart information. Health Communication, 31(1), 60–71. https://doi.org/10.1080/10410236.2014.936336 Search in Google Scholar

De Souza, R. (2005). Transforming possibilities of care: Goan migrant motherhood in New Zealand. Contemporary Nurse, 20(1), 87–101. https://www.ncbi.nlm.nih.gov/pubmed/16295345 Search in Google Scholar

De Souza, R. (2006). New spaces and possibilities: The adjustment to parenthood for new migrant mothers (Blue Skies Report 1 3). New Zealand Families Commission. Search in Google Scholar

De Souza, R. (2008). Wellness for all: The possibilities of cultural safety and cultural competence in New Zealand. Journal of Research in Nursing: JRN, 13(2), 125–135. https://doi.org/10.1177/1744987108088637 Search in Google Scholar

Ebersole, D. S., & Hernandez, R. A. (2016). “Taking good care of our health”: Parent-adolescent perceptions of boundary management about health information. Communication Quarterly, 64(5), 573–595. https://doi.org/10.1080/01463373.2016.1176939 Search in Google Scholar

Epstein, D. A., Lee, N. B., Kang, J. H., Agapie, E., Schroeder, J., Pina, L. R., Fogarty, J., Kientz, J. A., & Munson, S. A. 2017). Examining menstrual tracking to inform the design of personal informatics tools. In S. F. Gloria Mark (Ed.), Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems Pages (pp. 6876–6888). https://doi.org/10.1145/3025453.3025635 Search in Google Scholar

Executive Office of the President. (2014). Big Data: Seizing opportunities, preserving values (Report for the President). White House, Washington, DC. https://obamawhitehouse.archives.gov/sites/default/files/docs/big_data_privacy_report_may_1_2014.pdf Search in Google Scholar

Eyles, H., Jull, A., Dobson, R., Firestone, R., Whittaker, R., Te Morenga, L., Goodwin, D., & Mhurchu, C. N. (2016). Co-design of mHealth Delivered Interventions: A systematic review to assess key methods and processes. Current Nutrition Reports, 5(3), 160–167. https://doi.org/10.1007/s13668-016-0165-7 Search in Google Scholar

Frost, J. H., & Massagli, M. P. (2008). Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another’s data. Journal of Medical Internet Research, 10(3), e15. https://doi.org/10.2196/jmir.1053 Search in Google Scholar

Galloway, A. R. (2012). The interface effect. Cambridge: Polity Press. Search in Google Scholar

Gaver, B., Dunne, T., & Pacenti, E. (1999). Design: Cultural probes. Interactions, 6(1), 21–29. https://doi.org/10.1145/291224.291235 Search in Google Scholar

Greenstock, L., Woodward-Kron, R., Fraser, C., Bingham, A., Naccarella, L., Elliott, K., & Morris, M. (2012). Telecommunications as a means to access health information: An exploratory study of migrants in Australia. Journal of Public Health Research, 1(3), 216–221. https://doi.org/10.4081/jphr.2012.e34 Search in Google Scholar

Hughson, J.-A. P., Daly, J. O., Woodward-Kron, R., Hajek, J., & Story, D. (2018). The rise of pregnancy apps and the implications for culturally and linguistically diverse women: Narrative review. JMIR mHealth and uHealth, 6(11), e189. https://doi.org/10.2196/mhealth.9119 Search in Google Scholar

Institute of Medicine, Roundtable on Health Literacy, & Board on Population Health and Public Health Practice. (2009). Measures of health literacy: Workshop summary. National Academies Press. https://doi.org/10.17226/12690 Search in Google Scholar

Johnson, S. (2014). “Maternal Devices”, social media and the self-management of pregnancy, mothering and child health. Societies, 4(2), 330–350. https://doi.org/10.3390/soc4020330 Search in Google Scholar

Lawn, S., Delany, T., Sweet, L., Battersby, M., & Skinner, T. (2015). Barriers and enablers to good communication and information-sharing practices in care planning for chronic condition management. Australian Journal of Primary Health, 21(1), 84–89. https://doi.org/10.1071/PY13087 Search in Google Scholar

Ledford, C. J. W., Canzona, M. R., Womack, J. J., & Hodge, J. A. (2016). Influence of provider communication on women’s delivery expectations and birth experience appraisal: A qualitative study. Family Medicine, 48(7), 523–531. http://www.ncbi.nlm.nih.gov/pubmed/27472789 Search in Google Scholar

Lupton, D. (2016). The use and value of digital media for information about pregnancy and early motherhood: A focus group study. BMC Pregnancy and Childbirth, 16(1), 171. https://doi.org/10.1186/s12884-016-0971-3 Search in Google Scholar

Lupton, D., & Pedersen, S. (2016). An Australian survey of women’s use of pregnancy and parenting apps. Women and Birth: J ournal of the Australian College of Midwives, 29(4), 368–375. https://doi.org/10.1016/j.wombi.2016.01.008 Search in Google Scholar

Madden, D., Cadet-James, Y., Atkinson, I., & Lui, F. W. (2014). Probes and prototypes: A participatory action research approach to codesign. CoDesign, 10(1), 31–45. https://doi.org/10.1080/15710882.2014.881884 Search in Google Scholar

Madianou, M., & Miller, D. (2013). Polymedia: Towards a new theory of digital media in interpersonal communication. International Journal of Cultural Studies, 16(2), 169–187. https://doi.org/10.1177/1367877912452486 Search in Google Scholar

Mander, S., & Miller, Y. D. (2016). Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in Queensland. Journal of Racial and Ethnic Health Disparities, 3(1), 83–98. https://doi.org/10.1007/s40615-015-0118-7 Search in Google Scholar

McMichael, C., Gifford, S., & Temple-Smith, M. (2014). The cultural and social shaping of sexual health in Australia. In M. Temple-Smith (Ed.), Sexual Health: A multidisciplinary approach (pp. 99–113). IP Communications. https://books.google.com.au/hl=en&lr=&id=WcwlCAAAQBAJ&oi=fnd&pg=PA99&dq=%22peer+education%22+CALD+&ots=e57e4m7xjH&sig=CM5E_t1-zqjC7A2tKpdP6joV7ko Search in Google Scholar

Moss, F. (2008, October). The new media medicine manifesto. MIT Media Lab. http://www.frankmoss.com/pdf/MITMediaLab%20NewMediaMedicineManifesto.pdf Search in Google Scholar

National Academies of Sciences, Engineering, and Medicine, Institute of Medicine, Board on Population Health and Public Health Practice, & Roundtable on Health Literacy. (2015). Health Literacy and Consumer-Facing Technology: Workshop Summary. National Academies Press. https://market.android.com/details?id=book-5mj5CgAAQBAJ Search in Google Scholar

Nissenbaum, H., & Patterson, H. (2016). Biosensing in context: Health privacy in a connected world. In D. Nafus (Ed.), Quantified: Biosensing technologies in everyday life (pp. 79–100). Cambridge, Massachusetts: MIT Press Search in Google Scholar

O’Donnell, B. E., Lewkowitz, A. K., Vargas, J. E., & Zlatnik, M. G. (2016). Examining pregnancy-specific smartphone applications: What are patients being told? Journal of Perinatology: Official Journal of the California Perinatal Association, 36, 802–807. https://doi.org/10.1038/jp.2016.77 Search in Google Scholar

Pasquale, F. (2015). The black box society: The secret algorithms that control money and information. Harvard University Press. Search in Google Scholar

Patterson, H. N. H. (2016). Biosensing in context: Health privacy in a connected world. In D. Nafus (Ed.), Quantified: Biosensing technologies in everyday life (pp. 79–100). The MIT Press. http://www.nyu.edu/projects/nissenbaum/papers/Nissenbaum%20H%20Patterson%20H_Biosensing%20in%20Context.pdf Search in Google Scholar

Petronio, S., & Altman, I. (2002). Boundaries of Privacy. State University of New York Press. https://muse.jhu.edu/book/4588 Search in Google Scholar

Pezaro, S., & Lilley, L. (2015). Digital voice recorders–A conceptual intervention to facilitate contemporaneous record keeping in midwifery practice. Women and Birth: Journal of the Australian College of Midwives, 28(4), e171–e176. http://www.sciencedirect.com/science/article/pii/S1871519215000517 Search in Google Scholar

Rich, E., & Miah, A. (2017). Mobile, wearable and ingestible health technologies: Towards a critical research agenda. Health Sociology Review: The Journal of the Health Section of the Australian Sociological Association, 26(1), 84–97. https://doi.org/10.1080/14461242.2016.1211486 Search in Google Scholar

Robertson, Z., Wilding, R., & Gifford, S. (2016). Mediating the family imaginary: Young people negotiating absence in transnational refugee families. Global Networks-A Journal of Transnational Affairs, 16(2), 219–236. https://doi.org/10.1111/glob.12111 Search in Google Scholar

Sanders, E. B.-N., & Stappers, P. J. (2014). Probes, toolkits and prototypes: Three approaches to making in codesigning. CoDesign, 10(1), 5–14. https://doi.org/10.1080/15710882.2014.888183 Search in Google Scholar

Scott, K. M., Gome, G. A., Richards, D., & Caldwell, P. H. Y. (2015). How trustworthy are apps for maternal and child health? Health Technology, 4(4), 329–336. https://doi.org/10.1007/s12553-015-0099-x Search in Google Scholar

Segura Anaya, L. H., Alsadoon, A., Costadopoulos, N., & Prasad, P. W. C. (2017). Ethical implications of user perceptions of wearable devices. Science and Engineering Ethics, 24, 1–28. https://doi.org/10.1007/s11948-017-9872-8 Search in Google Scholar

Sisson, K. L. (2007). Theoretical explanations for social inequalities in oral health. Community Dentistry and Oral Epidemiology, 35(2), 81–88. https://doi.org/10.1111/j.1600-0528.2007.00354.x Search in Google Scholar

Smith, W., Wadley, G., Daly, O., Webb, M., Hughson, J., Hajek, J., Parker, A., Woodward-Kron, R., & Story, D. (2017). Designing an app for pregnancy care for a culturally and linguistically diverse community. Proceedings of the 29th Australian Conference on Computer-Human Interaction, 337–346. https://doi.org/10.1145/3152771.3152807 Search in Google Scholar

Sohn, M., & Bye, E. (2015). Pregnancy and body image. Clothing and Textiles Research Journal, 33(1), 64–78. https://doi.org/10.1177/0887302X14557809 Search in Google Scholar

Spivak, G. C. (2006). Culture alive. Theory, Culture & Society, 23(2-3), 359–360. https://doi.org/10.1177/026327640602300264 Search in Google Scholar

Thomas, G. M., & Lupton, D. (2015). Threats and thrills: Pregnancy apps, risk and consumption. Health, Risk & Society, 17(7-8), 495–509. https://doi.org/10.1080/13698575.2015.1127333 Search in Google Scholar

Tirado, M. (2011). Role of mobile health in the care of culturally and linguistically diverse US populations. Perspectives in Health Information Management / AHIMA, American Health Information Management Association, 8, 1e. https://www.ncbi.nlm.nih.gov/pubmed/21307988 Search in Google Scholar

Tripp, N., Hainey, K., Liu, A., Poulton, A., Peek, M., Kim, J., & Nanan, R. (2014). An emerging model of maternity care: Smartphone, midwife, doctor? Women and Birth: Journal of the Australian College of Midwives, 27(1), 64–67. https://doi.org/10.1016/j.wombi.2013.11.001 Search in Google Scholar

Tsvyatkova, D., & Storni, C. (2014.). Adapting Design Probes to Explore Health Management Practices in Pediatric Type 1 Diabetes. https://doi.org/10.1145/2593968.2610471 Search in Google Scholar

Valdez, R., Patton, T., & Brennan, P. (2010). To talk or not to talk: Exploring culturally diverse patients’ health information communication choices. AMIA ... Annual Symposium Proceedings / AMIA Symposium. AMIA Symposium, 2010, 812–816. https://www.ncbi.nlm.nih.gov/pubmed/21347091 Search in Google Scholar

Vamos, S., & Klein, K. (2016). Our self-tracking movement and health literacy: Are we really making every moment count? Global Health Promotion. https://doi.org/10.1177/1757975916660674 Search in Google Scholar

Weitzman, E. R., Kaci, L., & Mandl, K. D. (2009). Acceptability of a personally controlled health record in a community-based setting: Implications for policy and design. Journal of Medical Internet Research, 11(2), e14. https://doi.org/10.2196/jmir.1187 Search in Google Scholar

Yelland, J., Riggs, E., Small, R., & Brown, S. (2015). Maternity services are not meeting the needs of immigrant women of non-English s peaking background: Results of two consecutive Australian population based studies. Midwifery, 31(7), 664–670. https://doi.org/10.1016/j.midw.2015.03.001 Search in Google Scholar

Recommended articles from Trend MD

Plan your remote conference with Sciendo