MARIANNA LYA ZUMMO University of Palermo
As a form of public discourse about health, social media (one-to-many and multi-party) interactions are characterised by different voices, different language uses and different ways of representing the world. The narratives about health are dominated by opinionated tones, influenced by a mystified vision of scientific activity (Cunha and Garcia 2019), related to “I-pistemology” (Van Zoonen, 2012), that is the circulation of conflicting uncertainties and discourses around spectacularized aspects of health topics.
It is against this backdrop that medical experts and other health professionals have turned to digital stages (e.g. TikTok) to share educational content about timely/touchy topics, and to spread awareness specifically among the young(est) users employing communicative practices and channels that are accessible under the hashtags #DoctorsOfTikTok or #TikTokDocs (among the others). In these fast, musical (i.e. creative and engaging) videos, doctors perform their talks/facts, which humanises health professionals and raises awareness through humorous, and yet educational, contents.
163
This presentation aims at exploring these digital products where people discuss, negotiate and spread health information specifically tailored for a young audience, who often both exclude themselves (as uninterested) and are excluded (by parents and tutors) from receiving accurate health information. It attempts to contribute to research in the current practices of digital products and knowledge dissemination by exploring creative shifts in the process of accommodating the final product to a target audience that is protected on the one hand, since they are underage, but could prove to be discriminated against in their right to medical knowledge, especially if it regards their own condition. Following a social media-critical discourse perspective (KhosranoviNik 2018), this study explores the communicative representation of health discourse and, more particularly, it reports results on the micro analysis of the language choices and discourse constructions concerning
‘fragile’, on an age-related basis, health subjects. Results are then discussed on the macro level, taking into account how these age-specific discourses benefit from the “magnitude, penetrability and formal aspects” (KosranoviNik 2018b, 585) conveyed by the medium.
References
Bannink, R., Broeren, S., Joosten-van Zwanenburg, E., van As, E, van de Looij-Jansen, P. and Raat, H.
2014. “Effectiveness of a Web-Based Tailored Intervention (E-health4Uth) and Consultation to Promote Adolescents’ Health: Randomized Controlled Trial”. Journal of Medical Internet Research, 16, 5: e143.
Cunha, S. E. and Garcia M. 2019. “Fear time versus science time: discursive disputes over the epidemic of the Zika virus and microcephaly in Brazil”, Comunicação e sociedades, 35: 113-131.
Khosravinik, M. 2018a. “Social Media Critical Discourse Studies”. In J. Flowerdew and J. Richardson (ed.) Handbook of Critical Discourse Analysis. Routledge: London, pp. 582-596
Khosravinik, M. 2018b. “Social Media Techno-discursive Design, Affective Communication and Contemporary Politics”. Fidanzata Journal of the Humanities and Social Sciences, 1-16.
van Zoonen, L. 2012. “I-pistemology: Changing truth claims in popular and political culture”.
European Journal of Communication, 2(1), 56-67.
164
‘One Size Does not Fit All’ in Organ Transplantation: Tailoring Communication and Patient Education for Migrant and Ethnic Minority Populations
ALESSANDRA AGNESE GROSSI University of Insubria NICHON JANSEN
Dutch Transplant Foundation, Leiden, NL & Chair European Donation and Transplant Coordination Organization (EDTCO)
MARIO PICOZZI
University of Insubria
Communication is a critical element across the entire process of organ transplantation, from the promotion of organ donation, through to acquisition of family consent in intensive care units (ICU), and pre- and post-transplant patient education. For instance, communication is the means by which institutional actors and healthcare professionals (HCP) interact with potential donors and/or their families first, whereas it serves HCPs to relate with and educate transplant candidates/recipients afterwards. The increasing immigration phenomenon in the European Union (EU) has resulted in gradual increments of migrants and ethnic minorities (MEM) with end stage organ failure – particularly end stage kidney disease (ESKD). MEMs are important minority populations in the EU, the majority of whom are regular residents who benefit from healthcare coverage in publicly funded health systems. Yet, while these subjects are increasingly represented on transplant waiting lists, they remain underrepresented within the deceased and living donor pools. Further, studies report inferior knowledge and/or understanding of transplant among these vulnerable populations, with the potential for detrimental impacts on accessibility, quality of care, and outcomes of transplant.
The need for targeted strategies considering the multiple sociocultural, socioeconomic, and relational factors which may negatively affect the effectiveness of ‘one-size-fits-all’ approaches in this group of people has been put forward by scholars and institutions in the EU. Additionally, from a scientific, policy and ethical viewpoint, the inclusion of MEM groups is increasingly regarded as an important aspect in research on these populations. Based on a socioecological perspective, this panel aims to address the ethical and practical implications of tailoring interventions for MEM populations in the organ transplantation continuum. First, the panel will focus on effective strategies for promoting organ donation in MEM groups. Second, it will address the specific considerations for successfully relating with bereaved MEM families in ICU settings. Third, it will illustrate the causal mechanisms linking immigration background with disparities in the process of kidney transplant (KT) along with gaps in knowledge and potential areas for targeted interventions.
Finally, it will provide an institutional perspective on the issue. The panel will be further enriched by inclusion of a donor’s family and a KT recipient from MEM communities.
Keywords: communication, tailoring, ethics, organ transplantation, migrants and ethnic minorities References
Bhopal, R. and Sheikh, A. 2009. “Inclusion and exclusion of ethnic-minority populations in research on the effectiveness of interventions”. Diversity and Equal Health Care, 6, 4: 223-226.
European Kidney Health Alliance. 2019. A Shared Vision for Improving Organ Donation and
Transplantation in the EU.
https://ec.europa.eu/health/sites/health/files/policies/docs/js_ekha_en.pdf.
165
Mcleroy, K. R., Bibeau, D., Steckler, A. and Glanz, K. 1988. “An Ecological Perspective on Health Promotion Programs”. Health Education and Behavior, 15, 4: 351-377.
NHSBT. 2013. Taking Organ Transplantation to 2020. [cited 2021 Jan 19].
https://nhsbtdbe.blob.core.windows.net/umbraco-assetscorp/4240/nhsbt_organ_donor_strategy_long.pdf.
Poulakou, G., Len, O. and Akova, M. 2019. “Immigrants as donors and transplant recipients: specific considerations”. Intensive Care Medicine, 45, 3: 401-403.
Roodnat, J. I., van de Wetering, J., Zuidema, W., van Noord, M. A., Kal-van Gestel, J. A., Ijzermans, J.
N. and Weimar, W. 2010. “Ethnically diverse populations and their participation in living kidney donation programs”. Transplantation, 89, 10: 1263-1269.
Skelton, S. L., Waterman, A. D., Davis, L. S. A., Peipert, J. D. and Fish, A. F. 2015. “Applying best practices to designing patient education for patients with end-stage renal disease pursuing kidney transplant”. Progress in Transplantation, 25, 1: 77–90.
https://doi.org/10.7182/pit2015415.
Timmerman, L., Ismail, S. Y., Luchtenburg, A. E., Zuidema, W. C., IJzermans, J. N., Busschbach, J. J., Weimar, W. and Massey, E. K. 2015. “Exploring Knowledge About Dialysis, Transplantation, and Living Donation Among Patients and Their Living Kidney Donors”. International Journal of Behavioral Medicine, 22, 5: 580-589.
Van Biesen, W., Vanholder, R., Ernandez, T., Drewniak, D. and Luyckx, V. 2018. “Caring for Migrants and Refugees With End-Stage Kidney Disease in Europe”. American Journal of Kidney Diseases, 71, 5: 701-9.