Co-Creating Personas for HIV and AIDS Health Literacy: Insights From the Portuguese Project VIHVER

Authors

DOI:

https://doi.org/10.17231/comsoc.47(2025).6127

Keywords:

HIV, AIDS, persona, health literacy, co-creation

Abstract

The challenges posed by human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) are predominantly addressed from a biomedical standpoint. However, limited research explores the involvement of key community-based organisations that support individuals living with HIV and AIDS. This study examines the Portuguese project VIHVER, which fosters partnerships between representatives of community-based organisations and healthcare professionals through participatory collaboration and the co-creation of health promotion content. The aim is to map the co-creation process of personas used in communication campaigns developed by Portuguese associations engaged in VIHVER and to analyse these personas from a linguistic perspective. A qualitative methodology was employed, combining co-creation within the frameworks of community-based participatory research and integrated knowledge translation alongside participant observation and semiological analysis. The study transparently outlines the development of six personas designed to promote health literacy regarding HIV and AIDS, thereby addressing a gap in existing research. The analysis of verbal, visual, and graphic language highlights their significance in shaping effective and representative personas. Findings indicate that the grassroots co-creation process undertaken by the six associations constitutes a pluralistic, innovative, and practical model. It aligns with core principles of health literacy and offers potential for replication, broader applicability, and mutual benefit across stakeholders.

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Author Biographies

Cristina Vaz de Almeida, Sociedade Portuguesa de Literacia em Saúde, Oeiras, Portugal/Centro de Administração e Políticas Públicas, Instituto Superior de Ciências Sociais e Políticas, Universidade de Lisboa, Lisbon, Portugal

Cristina Vaz de Almeida holds a PhD in Communication Sciences, with a specialisation in Health Literacy, from the School of Social and Political Sciences, University of Lisbon. She is president of the Portuguese Society of Health Literacy, director of the postgraduate programme in Health Literacy at the Institute of Applied Psychology, and a founding member of the Portuguese Lab for Healthy Workplaces. She serves as editor-in-chief of the Jornal Investigação Médica and is a peer reviewer for the Portuguese Journal of Public Health. Vaz de Almeida is a researcher at the Centre for Public Administration and Public Policies and a member of several national and international bodies, including the Advisory Board of the BUMPER project, the National Cancer Hub – Portugal, the Portuguese Council for Health and Environment, the Scientific Council of the Journal of Psychology and Neuroscience, and the Academic Network of Health Sciences. She is also the coordinator and lead author of the Manual de Literacia em Saúde – Princípios e Práticas (Health Literacy Handbook – Principles and Practices), published by Pactor.

Ana Correia, Grupo de Ativistas em Tratamentos, Lisbon, Portugal

Ana Correia is a nurse and technical coordinator at the Portuguese Activist Group on Treatments. She holds a degree in Nursing from the Polytechnic University of Leiria – School of Health Sciences (2016). Between 2016 and 2020, she was actively involved in the project Sidade Alerta.

Andreia Pinto Ferreira, Associação Portuguesa para a Prevenção e Desafio à SIDA, Cascais, Portugal

Andreia Pinto Ferreira is a strategic leader with over 22 years of experience in coordinating Portuguese Association for the Prevention and Challenge of AIDS, a Portuguese non-governmental organisation dedicated to HIV/AIDS and viral hepatitis. She holds a degree in Social Work and postgraduate qualifications in Families and Social Systems, as well as in AIDS Studies. She has co-authored scientific studies on quality of life and HIV-related stigma, and her expertise lies in cross-sector project management, organisational modernisation, and social impact, aligned with the sustainable development goals of the 2030 Agenda. She has coordinated initiatives such as the Fast-Track Cities programme (UNAIDS) and infection screening efforts within prison and homeless populations. Her work centres on building strategic partnerships, promoting national awareness campaigns, improving the living conditions of vulnerable populations, and combating discrimination. She previously served as general coordinator of Portuguese Association for the Prevention and Challenge of AIDS, where she contributed to significant progress in the fields of health and social inclusion.

Catarina Esteves Santos, Hospital de Cascais, Cascais, Portugal

Catarina Esteves Santos holds a degree in Nursing (2003) and has specialised in Mental Health and Psychiatry since 2010. She has worked in the field of HIV infection since 2004, with experience in patient-reported outcomes, ageing and mental health, linkage to care, and clinical research. She is the founder of the HIV Nursing Working Group in Portugal (2018) and an active member of the European HIV Nursing Network since 2007, contributing extensively to research and professional training in the field. From 2018 to 2022, she served on the Executive Board of the Portuguese Association for the Study of AIDS. As an HIV consultant, she is regularly invited to speak at national and international conferences and authored several scientific publications. She is widely recognised for her leadership and expertise in nursing care for people living with HIV.

Cristina Mora, Associação Humanitária de Saúde e Apoio Social, Rio de Mouro, Portugal

Cristina Mora is the technical director and vice-president of the Board of the Humanitarian Association of Health and Social Support.

Cristina Sousa, Associação Abraço, Lisbon, Portugal

Cristina Sousa holds a degree in Social Work. She began her career as a social worker at Joaquim Urbano Hospital in 2003 and joined Abraço in 2006. Since 2020, she has served as president of Abraço.

Diva Trigo, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal

Diva Trigo has been a medical doctor since 2010, specialising in Infectious Diseases since 2017. She currently practises at Professor Doutor Fernando Fonseca Hospital, where she works across a range of infectious diseases, with a particular interest in HIV/AIDS, tuberculosis, and viral hepatitis. She is also a guest assistant lecturer at the Faculty of Medicine, University of Lisbon, within the University Clinic of Infectious Diseases.

Maria Isabel Casella, Hospital de São Bernardo, Setúbal, Portugal/Grupo de Ativistas em Tratamentos, Setúbal, Portugal

Maria Isabel Casella is a hospital assistant in infectious diseases registered with the southern regional section of the Portuguese Medical Association (No. 53762). She holds a master’s degree in Medicine from Charles University in Prague, Faculty of Medicine in Pilsen (2005–2011). She completed her internship at Professor Doutor Fernando Fonseca’s Hospital in 2012, followed by specialised training in Forensic Medicine (2013–2015) and Infectious Diseases at São Bernardo’s Hospital (2015–2022). Since October 2022, she has been working as a hospital assistant in infectious diseases at São Bernardo’s Hospital, where she is responsible for the pre-exposure prophylaxis consultation, as well as for decentralised consultations at Pinheiro da Cruz and Setúbal prisons and the Litoral Alentejano Local Health Unit. Since January 2021, she has served as coordinator of Local Unit for the Prevention and Control of Infections and Antimicrobial Resistance at Setúbal Hospital Centre, and she has been a member of its executive board since 2022, with responsibility for the Antimicrobial Prescription Support Programme. She is also actively involved with the Portuguese Activist Group on Treatments – Setúbal, where she has led the sexually transmitted infections consultation since October 2021.

Josefina Mendez Vazquez, Associação Abraço, Lisbon, Portugal

Josefina Mendez Vazquez is an infectious disease specialist at the Porto University Hospital Centre.

Maria Eugénia Saraiva, Liga Portuguesa Contra a SIDA, Lisbon, Portugal

Maria Eugénia Saraiva is a clinical and health psychologist with a degree from the Lusófona University of Humanities and Technologies. She has advanced specialisation in Community Intervention and Sexuality, as well as a postgraduate qualification in Sexually Transmitted Infections, with a focus on HIV/AIDS. A volunteer with the Portuguese League Against AIDS since its foundation, she has been serving as president of the board since 2006. She works as a health project manager, coordinator, and psychologist at Espaço Liga-te and the mobile unit Saúde + Perto. Her work involves the development of projects on sexual health, the prevention of HIV/AIDS, hepatitis, and sexually transmitted infections among vulnerable populations, including men who have sex with men, the homeless, immigrants, and injecting drug users. Co-author of the Manual de Psicologia da Saúde (Handbook of Health Psychology; 2021), she is an active member of various scientific and social organisations, such as the Portuguese Society of Clinical Sexology and the Health in Dialogue Platform. She is also a promoter of educational campaigns in Portugal and the community of Portuguese-speaking countries, notably through initiatives like Somos pela Saúde. Additionally, she works as a certified trainer for the Institute of Employment and Vocational Training and other organisations, collaborating with Private Social Solidarity Institutions and government bodies.

Patrícia Pacheco, Hospital Professor Doutor Fernando Fonseca, Amadora, Portugal

Patrícia Pacheco holds a degree in Medicine from the Faculty of Medicine of the University of Coimbra. She is a senior assistant in Infectious Diseases and has served as director of the Infectious Diseases Service at Professor Fernando Fonseca’s Hospital since 2012. She is also a guest assistant lecturer at the Faculty of Medicine, University of Lisbon and a clinical researcher in the field of HIV infection. She lectures on various training programmes in infectious diseases and is the author of several scientific articles published in national and international journals. She is a member of the governing bodies of the Portuguese Association for the Clinical Study of AIDS — board member (2023–2024) — and of the Portuguese Coinfection Study Group — chair of the General Assembly (2021–2024). She was also a board member of the Portuguese Society of Infectious Diseases and Clinical Microbiology (2017–2020) and, since 2023, has been a member of the National Executive Council of the Portuguese Medical Association.

Ricardo Fernandes, Grupo de Ativistas em Tratamentos, Lisbon, Portugal

Ricardo Fernandes is an activist with two decades of experience in the field of HIV. He holds a degree in Modern Languages and Literature from the Faculty of Letters, University of Lisbon. Since 2000, he has worked with various Portuguese non-governmental organisations, primarily in project coordination and management. He is currently the executive director of the Portuguese Activist Group on Treatments (https://gatportugal.org) and has served as president of the European AIDS Treatment Group ((https://eatg.org). He has co-organised several national conferences and co-authored studies and articles, particularly on stigma, diagnosis and delayed diagnosis.

Rita Pires, Associação de Intervenção Comunitária, Desenvolvimento Social e de Saúde, Amadora, Portugal

Rita Pires is a social work professional with extensive experience in the coordination and management of community-based and social projects. Since 2021, she has served as technical director of the Association for Community Intervention, Social Development, and Health (AJPAS), leading initiatives in the areas of HIV, hepatitis, tuberculosis, and community screening. From 2015 to 2021, she worked as a social worker at the Portuguese Activist Group on Treatments, focusing on psychosocial support and stigma reduction. She was also the technical director at AlertaMente (2018–2020) and executive director of a residential care facility for older adults (2013–2018). She began her career at the Grupo de Intervenção e Reabilitação Ativa (2011–2017). She holds a degree in Social Work from the Faculty of Human Sciences of the Portuguese Catholic University (2007).

Sílvia Ouakinin, Liga Portuguesa Contra a SIDA, Lisbon, Portugal

Sílvia Ouakinin is a psychiatrist with a robust academic and clinical background. Since 2021, she has been a guest lecturer at the Faculty of Psychology, University of Lisbon, where she teaches Psychopathology and Emotion. Previously, she served as an assistant professor at the Faculty of Medicine of the University of Lisbon for over two decades (2000–2021). She holds a PhD in Psychiatry and Mental Health from the same institution and has dedicated her career to both higher education and psychiatric practice.

Vitalina Silva, Associação de Intervenção Comunitária, Desenvolvimento Social e de Saúde, Amadora, Portugal

Vitalina Silva is president of the Association for Community Intervention, Social Development, and Health. Since 2022, she has also served on the municipal committees of the Amadora City Council, namely as secretary of the Education, Culture, Sport and Youth Committee and as a member of the Social Cohesion, Health, Safety and Civil Protection Committee.

Célia Belim, Sociedade Portuguesa de Literacia em Saúde, Oeiras, Portugal/Centro de Administração e Políticas Públicas, Instituto Superior de Ciências Sociais e Políticas, Universidade de Lisboa, Lisbon, Portugal

Célia Belim is an assistant professor in Communication Sciences at the Higher Institute of Social and Political Sciences, University of Lisbon, where she has been teaching since 2000. She holds a PhD in Communication Sciences, a master’s in Political Science, and a postgraduate degree in Islamic Studies. She is currently the deputy coordinator of the Communication Sciences Coordination Unit and teaches across all three academic cycles. She coordinates the funded research project Comunicação de Políticas Públicas de Saúde em Portugal — ComHealthPPP, linked to the Centre for Administration and Public Policy, where she is also a researcher. She is the director and scientific coordinator of the Revista Portuguesa de Literacia em Saúde and vice-president of the Scientific Council of the Portuguese Society for Health Literacy. She is co-author of Health Communication Models and Practices in Interpersonal and Media Contexts: Emerging Research and Opportunities (2021, IGI Global) and Image of U.S. Presidential Administrations: The Cases of George W. Bush and Barack Obama (2012, Lexington Books, Roman & Littlefield). She has received five academic awards, including seven for research and two honourable mentions.

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2025-05-23

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Vaz de Almeida, C., Correia, A., Ferreira, A. P., Santos, C. E., Mora, C., Sousa, C., Trigo, D., Casella, M. I., Vazquez, J. M., Saraiva, M. E., Pacheco, P., Fernandes, R., Pires, R., Ouakinin, S., Silva, V., & Belim, C. (2025). Co-Creating Personas for HIV and AIDS Health Literacy: Insights From the Portuguese Project VIHVER. Comunicação E Sociedade, 47, e025004. https://doi.org/10.17231/comsoc.47(2025).6127

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Vol. 47 (2025): Communication and Artificial Intelligence

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Varia

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Copyright (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

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This work is licensed under a Creative Commons Attribution 4.0 International License.

Authors own the copyright, providing the journal with the right of first publication. The work is licensed under a Creative Commons Attribution 4.0 International License.

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