Quem Semeia Cocriação de Personas Ligadas ao VIH e SIDA Colhe Literacia em Saúde: O Projeto Português VIHVER
DOI:
https://doi.org/10.17231/comsoc.47(2025).6127Palavras-chave:
VIH, SIDA, persona, literacia em saúde, cocriaçãoResumo
A problemática do vírus da imunodeficiência humana (VIH) e síndrome de imunodeficiência adquirida (SIDA) está geralmente confinada a uma perspetiva biomédica. São poucos os casos de investigação sobre a participação das entidades com peso na intervenção comunitária, como as associações de cariz comunitário que apoiam pessoas que vivem com VIH e SIDA. O estudo apresentado foca-se no projeto português VIHVER, que investiu na criação de parcerias entre os representantes destas associações de cariz comunitário e profissionais de saúde, numa simbiose participativa e de cocriação de conteúdos promocionais de saúde. O presente estudo visa mapear o processo de cocriação de personas usadas nas campanhas de comunicação das associações portuguesas integradas no projeto VIHVER e caracterizá-las sob a perspetiva da linguagem. Nesse sentido, usa-se o método qualitativo, assente na cocriação enquanto processo que integra investigação participativa baseada na comunidade e tradução integrada de conhecimentos, na observação participante e na análise semiológica. Os resultados detalham, de forma transparente, o processo de cocriação de seis personas para campanhas de literacia em saúde sobre VIH e SIDA, colmatando uma lacuna na investigação. As escolhas de linguagem verbal, icónica e plástica mostram o seu valor para a caracterização competente das personas. Conclui-se que o processo de cocriação desenvolvido desde a sua raiz pelas seis associações é uma experiência plural e altamente representativa, inovadora, utilitária, orientativa, inspirada nos princípios da literacia em saúde e com potencial de replicação, caráter transversal dos dados e ganhos para todos os envolvidos.
Downloads
Referências
Araújo, W. A. de, Assunção, M. L. de B., Araújo, I. S. de, Temóteo, R. C. de A., Souza, E. C. D., Almeida, G., Carvalho, F. O., & Feitosa, A. de N. A. (2019). Educação em saúde na estratégia saúde da família: Contribuições práticas do enfermeiro. Enfermagem Brasil, 17(6), 645–653. https://doi.org/10.33233/eb.v17i6.2231 DOI: https://doi.org/10.33233/eb.v17i6.2231
Barthes, R. (1977). Elements of semiology. Farrar, Strauss and Giroux.
Belim, C. (2024). Com todo o meu coração graças à literacia em saúde: A linguagem e a retórica em campanhas mediáticas portuguesas de saúde cardiovascular. Linha D’Água, 37(2), 184–210. https://doi.org/10.11606/issn.2236-4242.v37i2p184-210 DOI: https://doi.org/10.11606/issn.2236-4242.v37i2p184-210
Bhattacharyya, O., Mossman, K., Gustafsson, L., & Schneider, E. C. (2019). Using human-centered design to build a digital health advisor for patients with complex needs: Persona and prototype development. Journal of Medical Internet Research, 21(5), e10318. https://doi.org/110.2196/10318 DOI: https://doi.org/10.2196/10318
Cirlot, J. E. (2001). A dictionary of symbols (J. Sage, Trad.). Routledge.
Coughlin, S. S., Vernon, M., Hatzigeorgiou, C., & George, V. (2020). Health literacy, social determinants of health, and disease prevention and control. Journal of Environmental Health Science, 6(1), 3061. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7889072/
Darlington, E., & Masson, J. (2021). What does co-creation mean? An attempt at definition informed by the perspectives of school health promoters in France. Health Education Journal, 80(6), 746–758. https://doi.org/10.1177/00178969211013570 DOI: https://doi.org/10.1177/00178969211013570
Direção-Geral da Saúde & Instituto Nacional de Saúde Doutor Ricardo Jorge. (2024). Infeção por VIH em Portugal – 2024. DGS/INSA. http://hdl.handle.net/10400.18/9233
Dzinamarira, T., Mulindabigwi, A., & Mashamba-Thompson, T. P. (2020). Co-creation of a health education program for improving the uptake of HIV self-testing among men in Rwanda: Nominal group technique. Heliyon, 6, e05378. https://doi.org/10.1016/j.heliyon.2020.e05378 DOI: https://doi.org/10.1016/j.heliyon.2020.e05378
Elliott, S. (2007, 24 de maio). Madison Avenue says hello to ‘hello,’ again. The New York Times. https://www.nytimes.com/2007/05/24/business/media/24adco.html
Essink-Bot, M. L., Dekker, E., Timmermans, D. R., Uiters, E., & Fransen, M. P. (2016). Knowledge and informed decision-making about population-based colorectal cancer screening participation in groups with low and adequate health literacy. Gastroenterology Research and Practice, 2016, Artigo 7292369. https://doi.org/10.1155/2016/7292369 DOI: https://doi.org/10.1155/2016/7292369
European Centre for Disease Prevention and Control & WHO Regional Office for Europe. (2018). HIV/AIDS surveillance in Europe 2018: 2017 data. https://www.ecdc.europa.eu/sites/default/files/documents/hiv-aids-surveillance-europe-2018.pdf
Feisner, E. A. (2006). Colour: How to use colour in art and design. Laurence King Publishing.
Frow, P., McColl-Kennedy, J. R., & Payne, A. (2016). Co-creation practices: Their role in shaping a health care ecosystem. Industrial Marketing Management, 56, 24–39. https://doi.org/10.1016/j.indmarman.2016.03.007 DOI: https://doi.org/10.1016/j.indmarman.2016.03.007
Galliford, N., Yin, K., Blandford, A., Jung, J., & Lau, A. Y. S. (2022). Patient work personas of type 2 diabetes: A data-driven approach to persona development and validation. Frontiers in Digital Health, 4, Artigo 838651. https://doi.org/10.3389/fdgth.2022.838651 DOI: https://doi.org/10.3389/fdgth.2022.838651
Giunti, G., Kool, J., Rivera Romero, O., & Dorronzoro Zubiete, E. (2018). Exploring the specific needs of persons with multiple sclerosis for mHealth solutions for physical activity: Mixed-methods study. JMIR Mhealth Uhealth, 6(2), e37. https://doi.org/10.2196/mhealth.8996 DOI: https://doi.org/10.2196/mhealth.8996
Greenhalgh, T., Jackson, C., Shaw, S., & Janamian, T. (2016). Achieving research impact through co-creation in community-based health services: Literature review and case study. The Milbank Quarterly, 94(2), 392–429. https://doi.org/10.1111/1468-0009.12197 DOI: https://doi.org/10.1111/1468-0009.12197
Guest, G., Namey, E., & Mitchell, M. (2013). Collecting qualitative data: A field manual for applied research. SAGE. https://doi.org/10.4135/9781506374680 DOI: https://doi.org/10.4135/9781506374680
Hall, S. (1980). Encoding/decoding in the television discourse. In S. Hall, D. Hobson, A. Lowe, & P. Willis (Eds.), Culture, media, language (pp. 128–138). Routledge.
Heijmans, M., & Rademakers, J. (2018). Health literacy: More than the understanding and processing of health information. International Journal of Integrated Care, 18(S2), 1–8. https://doi.org/10.5334/ijic.s2079 DOI: https://doi.org/10.5334/ijic.s2079
Henry, S. L. (2007). Just ask: Integrating accessibility throughout design. Lulu.com.
Hibbard, J. (2017). Patient activation and health literacy: What’s the difference? How do each contribute to health outcomes. Studies in Health Technology and Informatics, 240, 251–262. DOI: https://doi.org/10.3233/978-1-61499-790-0-251
International Committee of Medical Journal Editors. (2019). Recommendations for the conduct, reporting, editing, and publication of scholarly work in medical journals. https://www.icmje.org/icmje-recommendations.pdf
Jull, J., Giles, A., & Graham, I. D. (2017). Community-based participatory research and integrated knowledge translation: Advancing the co-creation of knowledge. Implementation Science, 12, 1–9. https://doi.org/10.1186/s13012-017-0696-3 DOI: https://doi.org/10.1186/s13012-017-0696-3
Kim, J. (2009). Customers’ value co-creation with healthcare service network partners. Journal of Service Theory and Practice, 29(3), 309–328. https://doi.org/10.1108/JSTP-08-2018-0178 DOI: https://doi.org/10.1108/JSTP-08-2018-0178
Lambert, S. D., & Loiselle, C. G. (2007). Health information–seeking behavior. Qualitative Health Research, 17(8), 1006–1019. https://doi.org/10.1177/1049732307305199 DOI: https://doi.org/10.1177/1049732307305199
Liu, C., Wang, D., Liu, C., Jiang, J., Wang, X., Chen, H., Ju, X., & Zhang, X. (2020). What is the meaning of health literacy? A systematic review and qualitative synthesis. Family Medicine and Community Health, 8(2), e000351. https://doi.org/10.1136/fmch-2020-000351 DOI: https://doi.org/10.1136/fmch-2020-000351
Loignon, C., Dupéré, S., Fortin, M., Ramsden, V. R., & Truchon, K. (2018). Health literacy – Engaging the community in the co-creation of meaningful health navigation services: A study protocol. BMC Health Services Research, 18(1), Artigo 505. https://doi.org/10.1186/s12913-018-3315-3 DOI: https://doi.org/10.1186/s12913-018-3315-3
Long, A. F., & Gambling, T. (2011). Enhancing health literacy and behavioural change within a tele-care education and support intervention for people with type 2 diabetes. Health Expectations, 15(3), 267–282. https://doi.org/10.1111/j.1369-7625.2011.00678.x DOI: https://doi.org/10.1111/j.1369-7625.2011.00678.x
Maguire, M. (2001). Methods to support human-centred design. International Journal of Human-Computer Studies, 55(4), 587–634. https://doi.org/10.1006/ijhc.2001.0503 DOI: https://doi.org/10.1006/ijhc.2001.0503
Massey, P. M., Chiang, S. C., Rose, M., Murray, R. M., Rockett, M., Togo, E., Klassen, A. C., Manganello, J. A., & Leader, A. E. (2021). Development of personas to communicate narrative-based information about the HPV vaccine on Twitter. Frontiers in Digital Health, 3, Artigo 682639. https://doi.org/10.3389/fdgth.2021.682639 DOI: https://doi.org/10.3389/fdgth.2021.682639
Miller, T. A. (2016). Health literacy and adherence to medical treatment in chronic and acute illness: A meta-analysis. Patient Education and Counseling, 99(7), 1079–1086. https://doi.org/10.1016/j.pec.2016.01.020 DOI: https://doi.org/10.1016/j.pec.2016.01.020
Muscat, D., Mouwad, D., McCaffery, K., Zachariah, D., Tunchon, L., Ayre, J., & Nutbeam, D. (2023). Embedding health literacy research and best practice within a socioeconomically and culturally diverse health service: A narrative case study and revised model of co-creation. Health Expectations, 26, 452–462. https://doi.org/10.1111/hex.13678 DOI: https://doi.org/10.1111/hex.13678
Neate, T., Bourazeri, K., Roper, A., Stumpf, S., & Wilson, S. (2019). Co-created personas: Engaging and empowering users with diverse needs within the design process. In CHI ‘19 Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (pp. 1–12). https://doi.org/10.1145/3290605.3300880 DOI: https://doi.org/10.1145/3290605.3300880
Neuendorf, K. A. (2017). The content analysis guidebook. SAGE. DOI: https://doi.org/10.4135/9781071802878
Nutbeam, D. (1998). Health promotion glossary. Health Promotion International, 13(4), 349–364. DOI: https://doi.org/10.1093/heapro/13.4.349
Osei-Frimpong, K., Wilson, A., & Lemke, F. (2018). Patient co-creation activities in healthcare service delivery at the micro level: The influence of online access to healthcare information. Technological Forecasting and Social Change, 126, 14–27. https://doi.org/10.1016/j.techfore.2016.04.009 DOI: https://doi.org/10.1016/j.techfore.2016.04.009
Pearce, T., Shakeshaft, A., Wayland, S., & McKay, K. (2020). What is the co-creation of new knowledge? A content analysis and proposed definition. International Journal of Environmental Research and Public Health, 17, Artigo 2229. https://doi.org/10.3390/ijerph17072229 DOI: https://doi.org/10.3390/ijerph17072229
Rüegg, R. (2022). Decision-making ability: A missing link between health literacy, contextual factors, and health. HLRP: Health Literacy Research and Practice, 6(3), e213–e223. https://doi.org/10.3928/24748307-20220718-01 DOI: https://doi.org/10.3928/24748307-20220718-01
Salavati, S., Rahimaghaee, F., & Seylani, K. (2022). Co-creation: Advancing the objectives of healthcare organizations during the COVID-19 pandemic. Nursing Practice Today, 9(1), 1–3. https://doi.org/10.18502/npt.v9i1.7318 DOI: https://doi.org/10.18502/npt.v9i1.7318
Santos, P., Sá, L., Couto, L., & Hespanhol, A. (2017). Health literacy as a key for effective preventive medicine. Cogent Social Sciences, 3(1), Artigo 1407522. https://doi.org/10.1080/23311886.2017.1407522 DOI: https://doi.org/10.1080/23311886.2017.1407522
Seiler-Hugova, U. (2011). Colour: Seeing, experiencing, understanding. Temple Lodge.
Serio, C. D., Hessing, J., Reed, B., Hess, C., & Reis, J. (2015). The effect of online chronic disease personas on activation: Within-subjects and between-groups analyses. JMIR Research Protocols, 4(1), e20. https://doi.org/10.2196/resprot.3392 DOI: https://doi.org/10.2196/resprot.3392
Shahid, R., Shoker, M., Chu, L. M., Frehlick, R., Ward, H., & Pahwa, P. (2022). Impact of low health literacy on patients’ health outcomes: A multicenter cohort study. BMC Health Services Research, 22, Artigo 1148. https://doi.org/10.1186/s12913-022-08527-9 DOI: https://doi.org/10.1186/s12913-022-08527-9
Silva, S. R., Dias, A. de S., Dias, A. C. de S., Oliveira, A. L. de, Tessarolo, M. M. M., & Dias, E. N. (2023). Cultivating health: The potential of community gardens in primary health care. Revista Ibero-Americana de Humanidades, Ciências e Educação, 9(11), 3307–3322. https://doi.org/10.51891/rease.v9i11.12593 DOI: https://doi.org/10.51891/rease.v9i11.12593
Stock, C., Dias, S., Dietrich, T., Frahsa, A., & Keygnaert, I. (2021). Editorial: How can we co-create solutions in health promotion with users and stakeholders? Frontiers in Public Health, 9, Artigo 773907. https://doi.org/10.3389/fpubh.2021.773907 DOI: https://doi.org/10.3389/fpubh.2021.773907
Teleman, B., Svedberg, P., Larsson, I., Karlsson, C., & Nygren, J. M. (2022). A norm-creative method for co-constructing personas with children with disabilities: Multiphase design study. Journal of Participatory Medicine, 14(1), e29743. https://doi.org/10.2196/29743 DOI: https://doi.org/10.2196/29743
Tulsiani, S., Ichimiya, M., Gerard, R., Mills, S., Bingenheimer, J. B., Hair, E. C., & Evans, W. D. (2022). Assessing the feasibility of studying awareness of a digital health campaign on Facebook: Pilot study comparing young adult subsamples. JMIR Formative Research, 6(8), e37856. https://doi.org/10.2196/37856 DOI: https://doi.org/10.2196/37856
van den Heerik, R. A. M., van Hooijdonk, C. M. J., Burgers, C., & Steen, G. J. (2016). “Smoking is sóóó ... sandals and white socks”: Co-creation of a Dutch anti-smoking campaign to change social norms. Health Communication, 32(5), 621–628. https://doi.org/10.1080/10410236.2016.1168000 DOI: https://doi.org/10.1080/10410236.2016.1168000
Vargas, C., Venegas Hargous, C., Harfield, J., Bell, C., & Whelan, J. (2023). Co-creation approach in practice: Naming a café located within a rural health service provides added value to a health strategy. Advances in Public Health, 2023, Artigo 9989552. https://doi.org/10.1155/2023/9989552 DOI: https://doi.org/10.1155/2023/9989552
Vaz de Almeida, C. (2021). Eureka: A proposal of a health communication model based on communication competences of the health professional! The assertiveness, clarity, and positivity model. In C. Belim & C. Vaz de Almeida (Eds.), Health communication models and practices in interpersonal and media contexts: Emerging research and opportunities (pp. 134–162). IGI Books. https://doi.org/10.4018/978-1-7998-4396-2 DOI: https://doi.org/10.4018/978-1-7998-4396-2.ch005
Vaz de Almeida, C. (2023a). Do caos ao equilíbrio. Numa literacia em saúde do sistema todos contam. In 77 vozes pela nossa saúde. Um debate plural por um direito fundamental (pp. 142–166). Oficina do Livro.
Vaz de Almeida, C. (2023b). Modelo ACP – Assertividade, clareza e positividade: Um modelo de literacia em saúde e de competências de comunicação para melhores resultados na gestão de diabetes. In D. N. do Ó & E. C. M. Nascimento (Eds.), Manual de comunicação eficaz na diabetes (pp. 60–87). Sociedade Portuguesa de Diabetologia – GEED.
Vaz de Almeida, C., & Fragoeiro, I. (Eds.). (2023). Manual de literacia em saúde: Princípios e práticas. Pactor.
Vosbergen, S., Mulder-Wiggers, J. M. R., Lacroix, J. P., Kemps, H. M. C., Kraaijenhagen, R. A., Jaspers, M. W. M., & Peek, N. (2015). Using personas to tailor educational messages to the preferences of coronary heart disease patients. Journal of Biomedical Informatics, 53, 100–112. https://doi.org/10.1016/j.jbi.2014.09.004 DOI: https://doi.org/10.1016/j.jbi.2014.09.004
Wakefield, M., Loken, B., & Hornik, R. (2010). Use of mass media campaigns to change health behaviour. The Lancet, 376(9748), 1261–1271. https://doi.org/10.1016/S0140-6736(10)60809-4 DOI: https://doi.org/10.1016/S0140-6736(10)60809-4
Walters, R., Leslie, S. J., Polson, R., Cusack, T., & Gorely, T. (2020). Establishing the efficacy of interventions to improve health literacy and health behaviours: A systematic review. BMC Public Health, 20(1), 1–17. https://doi.org/10.1186/s12889-020-08991-0 DOI: https://doi.org/10.1186/s12889-020-08991-0
World Health Organization. (2024a, 22 de julho). HIV and AIDS. https://www.who.int/news-room/fact-sheets/detail/hiv-aids
World Health Organization. (2024b, 5 de agosto). Health literacy. https://www.who.int/news-room/fact-sheets/detail/health-literacy
Wray, T. B., Kahler, C. W., Simpanen, E. M., & Operario, D. (2019). User-centered, interaction design research approaches to inform the development of health risk behavior intervention technologies. Internet Interventions, 15, 1–9. https://doi.org/10.1016/j.invent.2018.10.002 DOI: https://doi.org/10.1016/j.invent.2018.10.002
Zhang, L., Tong, H., Demirel, H. O., Duffy, V. G., Yih, Y., & Bidassie, B. (2015). A practical model of value co-creation in healthcare service. Procedia Manufacturing, 3, 200–207. https://doi.org/10.1016/j.promfg.2015.07.129 DOI: https://doi.org/10.1016/j.promfg.2015.07.129
Downloads
Publicado
Como Citar
Edição
Secção
Licença
Direitos de Autor (c) 2025 Cristina Vaz de Almeida, Ana Correia, Andreia Pinto Ferreira, Catarina Esteves Santos, Cristina Mora, Cristina Sousa, Diva Trigo, Maria Isabel Casella, Josefina Mendez Vazquez, Maria Eugénia Saraiva, Patrícia Pacheco, Ricardo Fernandes, Rita Pires, Sílvia Ouakinin, Vitalina Silva, Célia Belim

Este trabalho encontra-se publicado com a Licença Internacional Creative Commons Atribuição 4.0.
Os autores são titulares dos direitos de autor, concedendo à revista o direito de primeira publicação. O trabalho é licenciado com uma Licença Creative Commons - Atribuição 4.0 Internacional.